Cluster headaches
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The response to this website has been so fantastic, I've had to seperate some of the messages. There were so many wonderful posts from suffers around the world, that it was taking entirely too long for the page to load.

Below are the guestbook entries from January-December 2007. Thank you for your continued active involvement in this site and keep those guestbook entries coming!

 

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Hello All, Just finished a 9 month and 20 day bout ......Ive had Cluster Headaches since 1982 ... usually 3-6 month duration and then a break of 2-3 years ..... Im 57 years of age and dont seem to have the strength to fight them off ...They just seem to possess me... Over the years Ive tried all types of drugs and therapys ..Even a drug trial about 10 years ago.. Imatrex is my best friend,,, I probably used about 200 shots in the past 9 months , works every time.... takes about 8 minutes .... High doses of predsizone also works well ,, I start at 80 mg a day and then taper off,,, It nice to get a break from the pain for a week or so to build back my strength.... During this bout I tried Lithium for about a month with no help at all. About a month ago I started taking verapmil ... 240 mg pill twice a day... Headaches stopped about 3 weeks ago , Im not too sure if it was the verapmil that did it or if it was just tme for them to stop....But I sure am smiling...I didnt think they were ever going to end.... I hope this will help someone ..... Wayne
Wayne Prry <wd.perry@hotmail.com>
Cranbrook, Canada
Friday, December 28, 2007 at 03:00:23 (EST)

Just checked out the web site. I was hoping to find some new alternatives but looks like I have tried most.
Jeffery R <hondo45x@yahoo.com>
Ava, NY USA
Thursday, December 20, 2007 at 00:20:22 (EST)

hi everyone i just recently found this site and read some of the post....wow... after reading some of them i realize i dont have it as bad as others.....but my purpose here is to try and give some relief for the pain that is so intense...the best way i have found is to get in shower turn hot water on to the point its ALMOST burning me and put my head under the shower and point it directly over my eye thats hurting sometimes it my left eye sometimes it the right with both my arms resting at the top of the shower stall if you stay under the water long enuff the hot water will numb your head usually takes about 2 minutes for it to be fully numbed...it has always relieved the pain for me until the goodies headache powders kick in ...and i have had them for almost 15yrs now .. i hope this helps somebody ......stacey loy
stacey loy <1966nova@bellsouth.net>
corryton, tn USA
Wednesday, December 19, 2007 at 20:55:11 (EST)

For years I did not know what my headaches were I sometimes thought that I must have a brain tumor or something as bad. Finally in the mid 80s I was informed that my problem was cluster headaches it did not make them better , but at least I knew that there were others out there (sorry about that).I am 65 years old and have had them since I was an early teen.The good news is that in the last 20 years I sometimes go 2 to 5 years without them. The bad news is I started a cycle last Friday so far and this is Tuesday 9. I was really pleased to find this site and hope to join, but will need help as the code will not come up when I fill out the required info. Well thanks and I hope to here from you. Bill
William Graves <williamgraves@hotmail.com>
Maryville, Tn USA
Tuesday, December 18, 2007 at 18:38:34 (EST)

Hi everyone. I just found this website. I wish it existed years ago. I started getting CH when I was 22 and they stopped (hopefully) when I was 39 (1997). It has been 10 years since my last episode. I lived 18 years of pure untreated hell, which I see is a lot less than most of you. My neurologist told me most people with CH stop getting them at around 40 but that was in 1982. I was never given and drugs that helped. I did find a treatment that usually helped. Heat. I boiled water in a ceramic mug in the microwave. Pour the water out and wrap the mug in a cloth. It's very hot. Use this on the area where there is pain. I chased the pain as it moved around. It seemed to lessen the pain, severity, and length of my CH.
James Davenport <james.a.davenport@comcast.net>
USA
Monday, December 17, 2007 at 15:58:45 (EST)

Perhaps my CH experience may help someone else. I found very early in my CH time that treating the pain was not going to be a satisfactory route to follow, so I began to concentrate on determining the cause of my problem. I had my first cluster headache at age 47 in March 1980, full blown and chronic by August 1980, and my last one (final I hope) in 1997. My doctor initially diagnosed my problem as sinus but with my help he finally said in August 1980 that I had CH. Although mine were never clusters . At least one a day, either out of the blue, or seemingly triggered by something I ate. I found Cafegot in 1982 that did enable me to ease the effects by taking one pill every morning. This was not always effective but did make my life livable. I also found I had a high threshold for pain. Before the CH I had little or no tolerance for people that complained of headaches. Believe me I did change that. Through several observations, happenings, etc I deduced by late 1986 that my INITIAL trigger was ROUGH SUEN CEDAR WOOD. I had cedar in my new home when I moved in, and I added more almost immediately. Needless to say, as soon as I decided the cedar was at fault, I immediately removed all the cedar wood. One observation was riding in a car with the windows open, with a lot of evergreen trees around, would activate a headache. I did this in California among the Redwood Forests. (I later learned that the same thing would happen if the A/C or heater in the car was using outside air as opposed to re-circulating the inside air.) Another was following a Cytotoxic test (a blood test to determine allergies to foods) I was on a diet to see if certain foods were the cause. I found myself suddenly having several attacks a day. We were vacationing in Kentucky, and I noticed that almost all the trees along the road were cedar trees. Leaving the area did ease the multiple attacks. Another, I walked into a restaurant in February 1986 in Steamboat Springs, Co and a headache started almost immediately. I looked around and EVERYTHING in the restaurant was made of CEDAR, walls, floor, ceiling, and furniture. I ran, not walked, out the door and I was able to avoid the headache. This incident is the one that caused me to finally remove all the cedar from my home. Even though the Cedar was the initial culprit, all types of trees/plants kept the effects going. Even as late as 1996, when I was almost totally free, I found that driving across the everglades in South Florida, and breathing outside air, that I did have a couple of full blown headaches return. I had bought a new car and unknowing to me the A/C/heater always defaulted to outside air when the car was turned off. Even as recently as 2003 I experienced what used to be symptoms of an on-coming headache. I had ridden most of the day in the mountains of North Georgia in a car with the moon roof open, but this was after we returned from the drive when the symptoms occurred. This headache did not develop. Eliminating the cedar was not an immediate cure. It took many years to become completely free of the headaches. But I did shortly begin to notice some positive signs. I found, as a Monday morning quarterback, that I had to be very patient in everything I did as no immediate relief or evidence of help ever was immediately evident. During many of the years of suffering I found I could often use what I call acupressure to completely reverse a severe attack. In my dark and quiet walk-in closet, I would use the heel of my hand (palm), or my thumb, to put EXTREME pressure on the right side of my head, different spots, and hold it there as long as possible. When I could find the right spot, I would somehow know it was right, hold the pressure and then the headache would swoooush away. Reading about pressure points but never having much luck with them, such as between the thumb and first finger, I tried my own acupressure . This did not always work, but when it did------------. I believe my experience told me the following- If I had been headache free most of my life, then when they did develop it was likely to have been caused by something different and external to me. That I be extremely vigilant and patient as no cure, or even evidence of help happens quickly. Even though many different triggers might have been involved, such as chocolate, cheese, wine, etc. in my case I had ONE primary trigger (the cedar wood) that caused the whole problem. Once the primary problem sensitized my system any one of the follow-on triggers worked to give me a headache.
James Helms <letvhelms@thevillages.net>
The Villages, Fl USA
Sunday, December 16, 2007 at 10:22:41 (EST)

Hello and welcome. You have found the best site there is if you suffer from, or support someone with Cluster Headaches. Please join us on the message boards (link on the left). There are many of us who are happy to provide support and experience. pain free wishes to you, nani
nani
Los Lunas, NM USA
Sunday, December 16, 2007 at 01:47:50 (EST)

I was on this site 3 1/2 years ago when I had my last cycle. They just came back a week ago. I am so thankful to be able to see my neuro on Thursday. I have had a few, and he is the best! I get so frustrated trying to explain these to others to have them only suggest Tylenol! They have no idea what it is like. I want to print out what they are and hand them out so people can at least try to understand what I am going through. I love being able to come to this site so I don't feel so alone. It brings me to tears sometimes when I read some people's entries. I sure wish they could come up with something better to make them go away.
Lesley <lh3257@msn.com>
DENVER , co USA
Saturday, December 15, 2007 at 23:44:32 (EST)

Hi my name is Tanya I first had Clusters at 17 and was diognosed by my docter stright away, he gave me something to prevent them (I do not know what) they did not work. I just suffered on and off for a few yeas then they went away for about 15 years with only the odd attack of one or two at at time. Then I had an 11 week attack nearly two years ago but only late evenings and night attacks, now they started again 4 weeks ago. This time I am getting 2 to 3 at night kip 7 to 9/10 and day attacks that very from 4/5 to 7/8 depending with shadows that always seem to be with me, I never know what I will get . I have been reading this site for a week or two and it makes me cry to know there are other people out there who know what I am going through. You all seem to be a really lovely bunch of people
Tanya Mcintosh <tanyamcintosh@hotmail.co.uk>
Jersey, UK
Saturday, December 15, 2007 at 17:03:19 (EST)

Hi, I'm new here. I've had cluster headaches for 33 yrs. Some years they are sooo bad I would like to end my life to stop the pain. I started going to a headache clinic last year when I was at the end of my headache cycle. Unfortunately they have started again. I am on methergine 4 times/day & Imitrex statdose & Migranal nasal spray. The Migranal works good, but evaporates so fast once it is opened that I don't get enough use from it. I've only used the Imitrex statdose once & it knocked me out. I weigh 100 lbs. & the 4 mg. dose is too strong for me. I've read how others on this site take apart the statdose to make it two doses. My question is if I can take apart the Imitrex statdose, can I use the medication in nasal form? Like others have said, even with insurance, my copay is $200 per prescription so I hate to waste it, but I'm not sure what else to do. Any suggestions would be appreciated. I couldn't get into my neurologist until Jan. 24th so I'm just trying to cope until then. make it 2 doses.
Judy Bottoni <jwbottoni@yahoo.com>
Brookfield, WI USA
Friday, December 14, 2007 at 14:20:03 (EST)

This is the first time to this site and firstly let me say how sorry I am for all you suffers. I fortunately do not get cluster headaches but I am a manager who has a member of my team who three months ago got these for the first time. Today was his first day back at work. I am collecting info for myself and others in the team so we can have a better understanding of his situation. Also he is not computer literate so I thought I might get some info that might help him as he is feeling frustrated with the medical attention he is getting. Anyhow my sympathies and I will continue to come here as part of MY treatment.
Michael <michael.j.dobbs@hotmail.com>
Sydney, NSW Australia
Friday, December 14, 2007 at 04:53:59 (EST)

I have had this condition all my life and it was not until 1995 it was identified to me. Have tried everything and not until Imitrex was introduced to me did I see any hope. Insurance will not cover it so I have spent my life savings to ensure it would be available to me. Every year I would have an attack that lasted 6weeks. I had adoctor tell me it should go away when I hit my 50's so I was thrilled to here something promising, I have taken every med offered to me and now after almost 3 years of releif their back and trying to make uo for lost time. Have used my last shots and have been fight withing with the insurance company to approve Imitrex. My wife is so upset with the pain I go through and my job is not happy with the days I am out. I feel like ending it all. Can someone please help me with some kind of releif and or hope. thanks for any positive input
Randy Urbina <hd2us@sbcglobal.net>
mather, ca USA
Wednesday, December 12, 2007 at 13:59:17 (EST)

Hi all, been dancing with the beast for 32 years... since 1975! Can't believe I made it this far. Boy did I get fed a lot of crap in the beginning, bad drugs, bad side effects, "Its all in your head" right? I'm two months on, four to twelve months off. Frankly I would be dead if not introduced to oxygen in 1982, aborts well for all but the peak periods (about 2-3 weeks) when I am lucky to get a couple of hours between assaults. Amerge (Naratriptan) works better than anything I have ever tried for both getting rid of them and keeping them there... but ouch!! $25.00 a pill twice a day and still not 100%? Narcotics are cheaper and who needs to be functional anyway?(LOL) And of course a pill can still take time. If you absolutely gotta have it yesterday (like if you're on a plane), its still Imitrex injections for me. Absolutely nothing other than the above mentioned treatments has ever come close to working for me... and I've tried more things than I can remember! Makes me sick just thinking about it.
Thomas Todd Nolan <ttnolan@sbcglobal.net>
Scotts Valley, CA USA
Monday, December 10, 2007 at 21:37:34 (EST)

Ive just been diagnosed with having ch.,eventhough I have had this about 5yrs ago
leon bowling <lbowling30@aol.com>
newton falls, oh USA
Monday, December 10, 2007 at 04:20:56 (EST)

I'm from Los Angeles, but now live and work in Korea. I've suffered from CH for about 4-5 years but it s gotten progressively worse. The first 2 years went undiagnosed. I saw specialist and all kinds of doctors from, eye doctors and chiropractors to ears nose and throat doctors and finally neurologists who said it s not a migraine and so they couldn t help me, then one day my friend s friend who was a pharmacist heard about my symptoms and said maybe it s a cluster headache. Only she said that CH is psychological ,,oh that pissed me off, but I was thankful she discovered what I had. Anyways to make a long story short, back then I was in the USA and was able to get imitrex nasal spray which worked enough but was crazy expensive. Also, back then my headaches were bad but not as bad as they are this year. And now I m in Korea where nearly every single abortive drug is illegal, because cluster headaches are so rare here, even more so than anywhere else, and because Korea makes any drug that has addictive characteristics illegal. So I m suffering here badly. I make regular trips to the ER room where they do little to help me. I finally got a note from my neurologist telling the ER room to give me non rebreathable oxygen at higher levels. But still the highest they have is 7 liters per minute. And there is no possibility for me to get oxygen at home. I have been given preventative medicine, but we re still experimenting. I m on lithium now and ergom*** whatever it s called with caffeine. But they don t stop my attacks, only fewer attacks and the strength of attacks are still high and long. I never had it this bad before. 1- 1.5 hours at that kip level 10 pain is more than I can handle, I really am hating life now. Is there any way to get imitrex mailed to me!!!!! I mean it s illegal for doctors to prescribe it, but it s not illegal for me to have it if I bring it with me. My problem is I work here and I can t get time off to go to the states and get meds.
Manuel Lara <Laramanuel@hotmail.com>
Seoul, South Korea
Saturday, December 08, 2007 at 19:10:36 (EST)

Here we go again!!! I've been registered here since 2000. I havd not posted much, I get so damned emotional when i read about all of us. Well, after 2 years, he's back again. Since my first post I have gone to a 2 year cycle with 6-8 weeks of 3-5 a day. This cycle is different though. I used to have the 1:30am ritual of rushing out of bed only to fight the beast curled up in a ball on my couch moaning. Now, I seem to have what I would rate as a k-1 all day that will climb to k-8 at either between 6-8 pm, then subside to k-1, then climb back up to k-8. Neuro started me off on zomig pills--when he found out I had taken 1 before bed EVERY night for a week, he all but shit. "You could have seized" he said. I said, "would the headache go away?" Anyway, ended up doing zomig melts...."worked", but insurance wouldnt pay for any more than 6!! LMFAO!! Switched up to maxalt melts, which also seem to "work", but now, no insurance. This cycle started about 3 1/2 weeks ago, he gave me the zomig again. After having taken 5 over the course of 4 days, I'm in the ER with irregular heartbeat and heart plapitations. Chest x-ray and bloobwork showed nothing unusual. Dr. has switched me up again to a triptan I've not seen before. It's called AXERT or almotriptan malate. These are a tablet, but have had them break a headache in 30 minutes and leave me with the ability(at least for now) to SLEEP THROUGH THE NIGHT!!! I may get 1-3 HAs through the day...but not as fierce, or as long. I've been on amitriptyline from day one. 20mg just before bed. I can never clain painfree, but pain-less can be almost as good. I'm looking forward to January, as that is when my cycle is scheduled to stop for 20 more months. Please GOD, have mercy on us all..........
RT Rom II <rrom@tampabay.rr.com>
Saint Petersburg, FL USA
Saturday, December 08, 2007 at 16:50:39 (EST)

Hi, I have suffered from Clusters for over 26years now, I'm luckly in away that I now get 18 to 20 Months off for good behaviour. But they are back again & just before Christmas. I have been with them for two weeks now & have tried all the medications, only one that works for me is a tea towel soaked in boiling water & placed straight onto my face. I know ouch.. But it works for me, it eases the pain so much that I can relax & ride the attack. It saddens me to see how much pain this inflicts on you all & how it restricts & screws our lifes. It also saddens me to find out that hardly anyone has ever heard of Cluster Headaches, They think a couple of Asprins & we will be ok, not knowing that nothing works & God it hurts....... All we can do is ride out the period wishing for the attacks to suside again. Chris
Chris DeLaney <Chris_DeLaney@hotmail.co.uk>
Beverley, East Yorksire UK
Wednesday, December 05, 2007 at 10:43:45 (EST)

Hello all suffers,i have suffered clusters for 19 years and every time i have another attack i prey it is the last, i constantly keep a water filled eye mask in my freezer as this can give me moments of relief. m y first attack at 20 years old lasted 6 weeks,no-one knew what the problem was..Test after test brain scans,doctors, consultants then yes you have Cluster Headaches.I was told i would have to learn to live with them which i ,as you all know, have done. Thankyou Helen
Helen Pointon <RNIBHelen@aol.com>
Stoke, England
Tuesday, December 04, 2007 at 12:40:28 (EST)

Ice, ice, ice - it!s best preventive of CH atacks !
Peter <emwgrp@centrum.cz>
Prague, Czech Republic
Monday, December 03, 2007 at 04:31:29 (EST)

Back again, having trouble registering, am hoping someone will pick up this question and post for me. Is it usual to have a large amount of Phlegm w/ a CH? It all started for hubby almost 2 months ago w/ what we thought was a cold. Even after antibiotics he still has a cough and phelgm. It is awful because if the CH was is hitting about every 3 hrs to not keep him (us) awake then the coughing up does. HELP!
Barbie <exceo@aol.com>
Port Charlotte , FL USA
Sunday, December 02, 2007 at 11:24:26 (EST)

Hi there and thanks for the site. Nothing is more frustrating than trying to explain what you're going through, and no one has a clue. I had a few episodes in the 80's, but most of them have been in the last 10 years. All this time, I thought I had sinus headaches, but none of the sinus medication would work. This last episode has been going on since the first of October. I average about 3 hours of sleep a night, surprisingly I haven't crashed and burned yet. I read about cluster headaches on the internet, went and got diognosed on Friday. Check this out, the Doc prescribed something for me, I don't remember what it was. I was driving th Walgreens to drop off my prescription, excited that I was maybe going to get a good nights sleep, and the pharmisist told me that the medication was discontinued! I'm just like what the hell, a few more nights, whatever. Anyways, these things suck, and I feel bad for each and every one of you.
Joe Beardemphl <joemeojoemeo@yahoo.com>
Denver, Co USA
Saturday, December 01, 2007 at 18:55:48 (EST)

Was on this site 5 yrs ago and hoped never to enter again--not because you aren't helpful but b/c the Beast was at bay. He is back w/ a vengeance. My husband is on a week of one at least 4 times a day, w/shadows in between. We got oxygen today, I got Kudzu and Melatonin, RC seeds on the way in addition to his Imitex and prednisone treatment. Thank you for helping with the arsenal!
Barbie <exceo@aol.com>
Port Charlotte, FL USA
Friday, November 30, 2007 at 18:51:53 (EST)

Just another Clusterhead
Ross Mallie <rmallie69@yahoo.com>
Moline, IL USA
Thursday, November 29, 2007 at 17:57:09 (EST)

Wow it saddens me to know how many others are living with this hell. I been getting them for 16 years now. And I wish no-one else had to go through it. I beaten my head on walls on floors just to feel something different than the headache.
Christopher <christophercheek@hotmail.com>
Tulare, Ca USA
Wednesday, November 28, 2007 at 13:16:38 (EST)

Hello i am just posting again because i forgot to add my email address. is any one going to the meet and greet in davenport if so could you send me some info it would be nice if my husband could meet others like if right now we are looking for a new doctor because his treats him like a drug seeker and does not know what to do with him he has been on every med possible and nothing works he is to the point that he does not know what to do i feel so bad because i cant help him. we have 3 kids and its hard for them to see their dad in pain so days i get so stressted out i dont know what to do between trying to take care of him kids and a full time job. one thing at least my job lets me leave if i have to. well thanks for listening dawn
dawn & jeff yopp (yopp3041@yahoo.com <yopp3041@yahoo.com>
c bluffs, ia USA
Wednesday, November 28, 2007 at 12:58:10 (EST)

I have suffered for years but just recently found out what they were. I found this site and have to say it is a great idea and thank you to all the founders and those who enter.
Brian Smith <triprover@yahoo.com>
Audubon, NJ USA
Wednesday, November 28, 2007 at 11:42:12 (EST)

hello it is so nice to know that my husband is not alone he has suffered for the last 8 years and we are to the point of trying shrooms or anything because nothing works thanks so much for listening any advice please email me
dawn and jeff yopp
council bluffs , ia USA
Tuesday, November 27, 2007 at 17:25:55 (EST)

Thank you for all of the information. I thought I was alone in this. So many people think I am making it up. It's nice to know that there are others out there that know what I am going through.
Phillip Toland <superbresults@windstream.net>
Waleska, Ga USA
Sunday, November 25, 2007 at 09:59:03 (EST)

This site is very helpful.I been dealing with these headaches for 10 years.ITs been over 12 months for me now since my last headache,and i still have the fear of it coming back.
Dave <dase@ptd.net>
Catawissa, Pa USA
Saturday, November 24, 2007 at 20:12:48 (EST)

i never had even a hangover b4 then in 1995 BOOM cluster headaches-i get them every 2yrs for approx 4 months. i find they increase in pain and attacks per day building into a blinding fury of hell and episodes can last for over 2 hours when peaking. my dr. hasn't even suggested alot of the meds. and i have recently fired him & have written down a few of the suggested drugs in hopes that something will help. i am female. nothing really takes away my agony but i find getting immediately out of bed when awoken instead of lying there hoping it will go away seems to help-but only if its immed. then i stick my head out the window & gulp the air like its my last breathe! and gulp a few cups of coffee. there is a spot on the back of the neck where i think the blood is rushing from that i apply pressure sort of under & up which seems to help-as well as applying a cooling salve such as tiger balm. it all seems to be correctly timed or it doesnt work as good-usually i think when i hope against hope that if i lay there i could actually fall back to sleep!ya right! i'm currently at my peaking cycles where they're coming frequenty and lasting over 2hours. the ONLY thing tat keeps me going is knowing eventually hopefully they will one day disappear as mysteriously as they arrived.although i'm staring to clue in that i break out in a flushed heat first then feel that circular pumping of blood do its pangs.i read that most suicides are from this and i can see how-its made me think of jumping in front of a truck to end the pain myself but i never would-THEY eventually go away. i tell myself its a reminder to appreciate the moments when i am painfree and try to be more productive. i have a foot massager that kind of helps take the mind focus a bit elsewhere as well, nerve endings(?) so if u have a supportive partner try that as well-at least u'll have a little pleasure while going thru hell! i havent tried them yet but am thinking of trying sleeping pills...if it really IS related to REM, sleeping pills leave people groggy because they make people skip the REM...worth a shot-hell i'm always wiped after fighting the pain anyways. i always wonder what the hell i've ever done to deserve this suicidal hell ...the only person i would wish this on is my ex-dr. because i'm currently not getting any medication-wish he could go thru it just once to relate how he's contributing to my suffering!and even then i dont REALLY mean that-i wouldnt truly wish this on anyone.GOD BLESS u all-never give in 2 the pain...eventually they'll go away or find a cure...right??
cindy <heyblondiehey@hotmail.com>
toronto, on canada
Friday, November 23, 2007 at 07:00:46 (EST)

i forgot to mention that i also suffer classic migraines (the daily double)but not both at the same time (thank god)or i would really be mad. ironically enough i suffered both conditions after returning from Vietnam after about 3 years. classic migraines are controlled by drugs and staying away from triggers but not ch i am excited to find this site and look forward to discussions on treatment from aroun the world as well as smpathysing with other sufferes.
PETER COLLYER <barbarac@optusnet.com.au>
sydney, australia
Wednesday, November 21, 2007 at 22:25:53 (EST)

had ch for 32 years now and in spite of what the dr says it does not diminish over time. it doesnt get better or worse but just that terrible terrible pain,and its not just the pain but the knowledge that tommorrow will be exactly yhe same. also been accused of "bunging it on" aussie speak for acting but we all know that we dont . i sometimes contempale suicide but by the time i get the courage it has generally eased.i try naratriptan and sandomigran but it is of limited help but i suppose its better than no help at all.i can tell you that dr's really dont care because they cant cure it so who cares. put up with it , i might be the only australian here but there is appearently no supprt group in Aus that offers A service
PETER COLLYER <BARBARAC@OPTUSNET.COM.AU>
SYDNEY, NSW AUSTRALIA
Wednesday, November 21, 2007 at 19:56:26 (EST)

I guess you could say I've been having a bad time of late. I've (hopefully) just come through my first cycle and believe me, it was hell alive. I thought that I was the only one to suffer this way. Indeed I hoped I was, after all you wouldn't wish the beast on your most hated enemy would you? Before I was diagnosed I thought I was dying, I thought that deep in my brain hid a tumour or abnormality waiting to snuff me out. My attacks last for approx 7 days at a time but build up to a screaming or dancing point every 10-15mins. I freely admit that I can't cope with them, they drive me mad. I have two very young kids who don't need to see their mummy screaming and rocking back and forth when a peak hits. I've been given Diclofenac, Dihydrocodeine and Sumatriptan as a cocktail before. Shit, I even had to have an emergency Doctor out to sedate me once. I've been told I've got meningitis 4 times and also have been accused of being a drug addict before. It's shit, I know it is. My family suffers, my husband suffers and I suffer, not just from the pain but from the thought that nobody believes me. I wake up every day terrified that another one's going to storm in. I stumbled across you guys by chance and I am so grateful you are here because we thought that I was alone. If anyone wants to get in touch you have my email and thanks again guys for being here xx
Dee Teale <tealehoochimama08@googlemail.com>
Bradford, UK
Tuesday, November 20, 2007 at 18:17:14 (EST)

My wife has suffered from the beast for almost a year. It started the week before christmas 06 and she has been accused of being a junky and diagnosed with Meningitis 4 times now. Finaly a locum GP told her that she is sufering CH. It was a relief to know that she wasnt dying although during the early stages it was like watching a newborn defenceless baby. I felt helpless. For so long we thought we were the only ones having to deal with this but since my wife herself told me about this website I have become far more relaxed and I now know that if the headaches reoccur that we just have to cope. This will be a whole lot easier now that we have advise from other sufferers and their carers. Thankyou for being here
Eddy Teale <eddthehead28@googlemail.co.uk>
Bradford, England
Tuesday, November 20, 2007 at 17:59:59 (EST)

I will never forget my first attack in December of 2001. I thought I was having a stroke. My wife was in the process of calling for an ambulance when just as quickly as the attack started, it ended. I was still taken to the hospital and evaluated. I was told I have migraines and was given migraine medication. That night, at nearly the exact same time, the attack returned with a vengance. I took the medication, nothing happened. I was pacing around the room, hitting my head against the wall, crying, screaming. It was a incredibly frigtening experience not only to me but my wife and children. Then, like before... gone. To make a long story short after visiting many doctors, and getting the same "migraine" story, I came across a doctor who had practiced in San Fransisco. The minute I began describing my symptoms, he lit up like a Christmas tree. I knew instantly, he knew my pain. He then told me about cluster headaches. The relief was incredible. He told me that there are many treatments out there, but I would just have to figure out which one worked best for me. He was willing to work with me and my treatment to find something that worked. It turned out to be oxygen therapy. If I was able to get the mask on and the oxygen flowing within the first 5 minutes of the attack it would end minutes later. I would often fall asleep with the mask on. I have learned when to expect my cycles which are always in the Winter/Spring and usually skip years. I have also learned of more non-traditional relief methods such as downing a Red Bull the minute the shadow starts to come around followed by the oxygen. I have found some relief with lavendar oil. I don't know if this has some merit or if it's just a comfort for me. My heart goes out to the rest of this group. It was tough reading through many posts as I can honestly say, I know your pain. I know what it feels like when that demon shadow begins to creep out of the dark before taking hold of your life. I have a tough time during cycle going to sleep as I am always on the offensive knowing that my nightly visitor of pain will be arriving shortly.
Scott <scott.bringhurst@fisher-price.com>
East Aurora, NY USA
Monday, November 19, 2007 at 14:35:30 (EST)

I'm very sad to see so many people suffering from this horrible beast. I'm 44 and I've been a clusterhead since I was 18 (26 years). As I sit here and write this post I can feel the "shadow" just waiting for me to lay down and go to sleep so the beast can attack. I had been in remission for the past three years and might have had 1 shadow this summer. I knew I would never be free from the beast, but never thought it would come back so aggressive (K-9 and K-10). Today was the worst I've had in many years I really wanted to just ball up in a corner and just die, but I decided many years ago that I would not let this nasty creature destroy me. When I was first diagnosed in the 80's I had verapamil, O2, inderol, elavil (amitryptalene)and a few others. As the years went by things got better but now it's just like the first time. I have made an appointment with the doctor to start the pain free quest. My cycle has only been active for two weeks now and it's been pure hell. I have literally pulled all the hair from the right side of my head and now i've even starting using a safety pin to lightly poke the right temple just to divert the immense pain. God knows all of you have my sympathy because I know first hand what your dealing with, just stay strong and don't let him win.
Dana Cooper <djcoop1@bellsouth.net>
Jacksonville, FL USA
Friday, November 16, 2007 at 23:47:48 (EST)

I suffered for 5 years with these headaches, then tried self-hypnosis. It won't stop a headache once it's started, as to achieve the alpha state you need a degree of serenity which the CH makes impossible. However, when next the thing goes away for a while, practise putting yourself to sleep, repeating the mantra, "I'm going to sleep well, and wake up feeling great. No headaches tomorrow, and none the day after", or something to that effect. There are several good books on self hypnosis technique, find them on one of the websites, and try it. You have to repeat it every night from then on. Not unlike saying your prayers as a child for those that did this, or still do. I tried an assortment of tablets, Imitrex etc, but found that unless I took them as soon as I felt the first sign of a headache coming on, it simply didn't shift it. I tried icebags on the head, and other treatments, none of which worked. I came to the conclusion that it had to be stopped before it started, because once started, nothing short of decapitation would shift it. I hope this helps some of you, I know all too well what a misery this is.
Trevor <Trevor.Jones@ec.europa.eu>
Lux, Lux
Friday, November 16, 2007 at 06:35:15 (EST)

I've had CH since February and it's coming back every other month. I only recently found out what it was exactly [my sister suffers from migraine, so we presumed I had the same] and I'm glad to see that there is a great website about it. I thought I had a rough time when I had an attack, but knowing that there are people who have it chronically, several attacks a day... It makes me want to help and support them in any way possible... Good luck everyone :) Stephanie, Amersfoort, The Netherlands
Stephanie <steefepeef@hotmail.com>
Amersfoort, The Netherlands
Thursday, November 15, 2007 at 10:43:08 (EST)

I am during a period of CHs recently(8/Nov/2007 ~ ??).Last period was 5/Feb/2006 ~ 30/Mar/2006.First period was in 1980.In this period,I take 10mg Flunarizine Hydrochloride Capsules before sleep.And while an attack of Chs,I take 10mg Prednisone Acetate Tablets.
Kaedar Feng <kaedar@msn.com>
Taipei, Taiwan
Thursday, November 15, 2007 at 03:54:41 (EST)

I have suffered from CH for 15 years. There has only been one year that I skipped a cycle. I use to get them in the spring but for the last two years they have started in the fall. The cycle usually lasted for about 6 weeks until now; I am coming up on 12 weeks and continue to have them nightly sometimes around 7-9 P.M. but usually in the middle of the night. I did not seek medical attention until 2005; I was diagnosed with CH at that time. Due to the fact that my cycle has not ended as scheduled, I am scheduled to see a neruo on 12/10/07. Imitrex injections and pills have been effective. Does overuse of Imitrex create rebound headaches? Oxygen is also effective in about 15-20 minutes. Regardless, what an impact on the quality of life.
Jay Phillippe <coolcat237@aol.com>
Edmond, OK USA
Wednesday, November 14, 2007 at 12:20:45 (EST)

best thing that really makes them stop is for me to catch a cold or the flu. my cycle started last month. just when i stared on have had the beast for 20 plus years, and the the medication this time i got my cold and have free for 4 days now. i noticed this about 7 years a go that when i got a cold or flu the beast left me alone. has any one else every had the beast not bother you because of a cold. got my oxy. and med. when he comes back. ken g.
ken garrison <kengarrison1@att.net>
hayward, ca USA
Tuesday, November 13, 2007 at 18:41:46 (EST)

I found this site today. My heart is breaking for all of you. One advantage to thinking that I have been alone in my pain is that I hate to imagine anyone else having to deal with it. The first time I heard about CH was in 1997 after I had my first few K10s. I now wonder if the severe migraines I have had since my preteen years have been lighter cycles leading up to the distinguished cycles I saw from 1997 to 2003. I had been thinking I was free after the 3 1/2 year hiatus. I passed off the few k3 to k4 headaches this summer to other causes. Last week I grudgingly admitted I am in another cycle. They are not gone. Friday I had a two-hour k9 that broke for about 20 minutes then hit again for another hour. God is so active in my everyday life. When the pain hits my prayers seem to hit the ceiling and go no farther. I keep telling myself that He will never leave me nor forsake me, and I keep asking Him to please, please help me. You all know what I am going through. I wish you didn't. Heat, ice, about 10,000mg of aspirin, and deep (bruising) massage (lately with a "thumper" vibrator) have been my treatments. I guess they may just be a part of my "dance", but you've got to do something. Screaming seems to concern the neighbors, especially since mine change each night. My wonderful wife of 14 years and I drive a truck together in the US and Canada. Thank you to those of you who are coping and have learned to keep a great attitude while you do it. You are an inspiration.
Danny George <dannyandcindy@hotmail.com>
Monument, CO USA
Monday, November 12, 2007 at 21:29:38 (EST)

After 9 weeks of waiting, I found out today what I have. The Doc pulled up a Web Page and it was as if someone had been watching my every move. I'm 49 years young and have had only a couple slight headaches before these in my life. Being an Engineer, I analized every situation. About the time I thought I knew what the cause was, I found it to be Wrong !! Now that I have found this Site, I'll be writting more. Thanks for being Here !!!
Terry A. Yager <yagcs2@insightbb.com>
Homer, IL USA
Monday, November 12, 2007 at 17:40:28 (EST)

I am now 27 and have been suffering from CH most of my life. I never told anyone because I though I would end up having a tumor or something. Just a month ago I couldn't take it. I went in to see the dr. Immediately he knew I had a CH. He prescribed several medication including atenelol, tylenol w/codine and vicodine (obviously not to be taken at the same time) among some of the few. Nothing has worked. Three weeks ago I was in the er with a series of headaches that had lasted over 36 hours. They tried everything; including a migrane shot and oxygen. Unfortunately the oxegen made it worse and the migraine shot did nothing at all. Has anyone out there tried anything that has helped. Please I can't sleep, work do anything! My headaches are so bad that when I finally do fall asleep, I am having nightmares about my headaches and I am actually screaming in my dreams because of the pain. If you know of anything...please let me know!!
Susie <susieqrey@msn.com>
Modesto, CA USA
Saturday, November 10, 2007 at 20:52:41 (EST)

For what its worth. Am in my eighth decade. Had had headaches during the 1960s and in 1976 was told that I had cluster headaches. Was diagnosed by Dr.Seymour Diamond of Diamond Headache Clinic in Chicago, Illinois. On reflection, think that mine were pretty mild. As the sufferers know, they came at inopportune times. Years ago Dr. Diamond wrote a book titled More Than Two Aspirin which had a chapter on cluster headaches. The office staff of Dr. Diamond has instructions to arrange for prompt handling of people that sound as though they are having cluster headaches. The staff arranges to get the patient into the office as soon as possible. The first request for an appointment is often placed by the wife of the patient. The wife said when I had a headache that my face would be distored. One time while having a session, went to a chiropractor and after an adjustment of my neck, the headaches went to the othe side, Some medications which Dr. Diamond prescribed were: ERGOMAR, SANSERT, MEDROL, GVNERGEN, PHENERGAN and CAFERGOT (CAFERGOT WERE SUPPOSITORIES). My last headache was in 1979. (Would have been about age 46.) My alcohol consumption has decreased substantially. Things to keep in mind. They are like gas. They will pass. They are only temporary. BJ
Bruce Jensen <brucejensen@fastermac.net>
Elgin, Il USA
Tuesday, November 06, 2007 at 17:47:23 (EST)

It's been around two years now and a few weeks ago they began again. I honestly believed I was over with the episodes. I regularly had them like clockwork in the past (15 past years) but after such a time without them, I really began to feel fortunate .no such luck .you all know that already and I guess I did too deep down inside. So .there I am again, up between midnight and 1am and then again between 2 and 3am .EVERY NIGHT just like the old days. I first bury my head in the pillow as deep and hard as I can thinking I can rock them away with enough rocking and enough pressure into the wall through the pillow. Of course in less than 5 minuets I am up, staggering around heading for the freezer, grabbing the ice pack like it does a damn bit of good. I m leaning over the sink, rocking then banging my head against the fridge or whatever else I can, heading for the door if it s cold enough outside to get as much of the cold air in my lungs and head but of course the only thing that helps is the clock .keep ticking get to the 30min mark as it should be gone by then and generally it is but sometimes it s not. It s at the point now where the pain stays with me nearly all day, it s weak but it s there, about a 2 rather than the 8 s or 9 s. How long this time? I wish I knew all I do know is they are back .again ..
Michael Billings <logic220@hotmail.com>
New Hampton, NH USA
Tuesday, November 06, 2007 at 13:51:46 (EST)

Subject: Bite Plate for Jaw Clenching Before my CH became very obvious, I had jaw pains 2005/went to dentist & periodontist - thought teeth problems. Was fitted for a periodontal bite plate (ridiculous cost $400 not covered by med/dental plan) but then headaches became horrible & obvious to my doctor/neurologist -got meds (verapamil & topamax are my magic combo as preventative, oxygen kills my pain, past 6 months good) However at weekly aqua exercises, headaches would start up, I noticed jaw clenching so started using this bite plate (rec'd it only couple months back) during exercises & no headache. I have determined alcohol/tobacco/foods are not triggers but this seems to be a contributing factor. I cannot back off meds, headaches come right back, I seem to be chronic but under control for now. Hope it stays this way, meantime I luv this website, have limited time/access to computer at work & also bit ditzy at using outside websites. Hope I sent to right place. Carol...otherwise known as kitchenlady
Carol Camara (kitchenlady) <ccamara@uttermorris.com>
Burlington, ontario Canada
Tuesday, November 06, 2007 at 13:08:29 (EST)

Well this site has been a bit of a discovery for me! I've been a cluster head for about fifteen years. I take Rizatriptan in the form of Maxalt Melt. They work, but a bit like Russian roulette in reverse... Sometimes the drug does absolutely nothing! The trick with it is speed! From the time I get the first warning signs of a CH, I've got about ninety seconds to get the Maxalt wafer out of it's awkward package and on my tounge. I partially un-wrap one before I go to bed, to save valuable seconds! having found this site today, I shall try the water thing straight away.Well it's cheap! Richie
Richie_P <raphi@noc.soton.ac.uk>
Southampton, Great Britain
Tuesday, November 06, 2007 at 11:41:54 (EST)

It's nice to find you. I've been suffering for along time. Thinking I'm pretty much alone out here. I've just recently discoverd Oxigen & sleeping in a recliner. I'm enjoying each and every pain free day!
Deborah <Debbiea@twcny.rr.com>
Clinton, NY USA
Tuesday, November 06, 2007 at 10:13:18 (EST)

I have been home from work for the past three weeks. I suffer from chronic cluster headaches. I have had them for tthe past 11 years. I have tried everything that is possibly out there. I work in the puplic transportation industry and unfortunitly my employer considers these headaches as a non sickness (there doctor). But to add some good news I have gone to a natural path and I am taking natural substances to combat the demon. I can say I am 60% to 80% bettter. Stopped taking the rx meds cause they kill your liver. Right now I am taking omega three 2 twice daily Cayen pepper pills 3 times daily, Ginco 3 times again, and a new product called max gxl 3 pills twice daily. So far so good, going back on Monday! We'll see what happens.
mike gonsalves <mykgon76@hotmail.com>
toronto, ont Canada
Thursday, November 01, 2007 at 15:37:33 (EDT)

OMG, I'm not alone, there are other CH bangers out there. Thank you for this site,I now understand why I do the things I do.
Galen Myers <myers1@comcast.net>
Washington, Mi. USA
Wednesday, October 31, 2007 at 17:01:48 (EDT)

Nice web sight ! I have had cluster headaches since I was 16 years old.I'm now 52. They became chronic in my early twentys and went through all the different treatments that all failed to work intill when I was 27 and treated at the Mayo Clinic and had my trigminal nerve cut. Best thing that ever happenind to me!! I've been pain free now for 25 years . I still have the headaches like clock work three times a day. My eye gets blood shot and waters but no pain ! So I look at that time before the surgery as the dark ages and ever since as the good life ! Thaks for the sight.
Don <fourdogstove@msn.com>
St. Francis, MN USA
Sunday, October 28, 2007 at 23:05:27 (EDT)

Heya, I'm new to this site even though my mum and dad have been on it many times. I am 15, I suffer from both Cluster Headaches and Ophthalmoplegic Migranes. Ophthalmoplegic Migrane is basically when the third nerve leading to the eye imflames..causing pain and the eye to compleatly shut down. I have had this since i was 7..and to be honest I am so fed up with it, I would do anything to find a cure. My last attack was about 2 weeks ago where i was admitted into hospital and spent a total of 8 days there trying to manage the pain, I hav tried Naproxen, Codeine Phosphate, Oxygen, Oramorph, Sumatriptan, and now Indometicin which seems to be helping. I also have to take anti-sickness tablets because a throw up so badly. I get annoyed with people who say 'I know what your going through' when they actually don't. So i joined this website, anyone who wants to talk me about my headaches..feel free to, but i will be honest with my answers. At the moment i'm not really coping with them, I feel I cant do it, its been 8 years and they still aren't any better. Anyone who can give me hope again let me know! I really sympathise with anyone who suffers from C.H I really do. .x Jay .x.
Jemima <puddleduck22@hotmail.co.uk>
Bristol, England
Sunday, October 28, 2007 at 16:01:56 (EDT)

Prof. Peter Goadsby, well-known British neurologist interested in CH, is scheduled to speak on February 8, 2008, at a meeting of the British Neuropsychiatry Association. His topic is "The Aetiology and Management of Headache: an Update." For further information, check the British Neuropsychiatry Association web site.
Barbara Young
USA
Saturday, October 27, 2007 at 12:22:28 (EDT)

I am so thankful for this website. I'm like everyone else, it's nice to find out your not alone! I'm 42 and had my first CH is 1998. Went 3 years and they started again. Since then they come every two years and have lasted about 3 months each bout. Until now! I am starting my 6th month of having 2-3 attacks a night. I've tried lots of meds and oxygen. The only med that has stopped the attacks is the meteral dose pack (steriods) you take for 6 days.(I know that is probably spelled wrong) I don't have them for those 6 days but as soon as I'm off them, they come back. Unfortunately, my doctor says I can't take more than 3 packs in a years period. Oxygen helped at first but doesn't help now. I wish everyone the best and thanks for listening.
Jill <jill2n1s@yahoo.com>
Canton, GA USA
Friday, October 26, 2007 at 01:23:41 (EDT)

Would love to know about a local support group in Cape Coral/Fort Myers FL area.
Gale Studna <JC_FRDY@COMCAST.NET>
Cape Coral, FL USA
Monday, October 22, 2007 at 15:11:48 (EDT)

Hello and welcome. You have found the best site there is if you suffer from, or support someone with Cluster Headaches. Please join us on the message boards (link on the left). There are many of us who are happy to provide support and experience. pain free wishes to you, nani
nani
Los Lunas, NM USA
Wednesday, October 17, 2007 at 02:18:52 (EDT)

For all the people in the world suffering with these debilitating illness, God has a plan for you. I have been sufering with these headaches for 14 years and noone can tell me how to make them go away. I wake up every other day and I can "smell" when one is coming. I start rubbing my right eye and the sneezing starts and then within 15 minutes I can't see, I am dizzy, I am nauseous, my right nostril starts running, and this last anywhere from 1 to 2 hours. Ater this I can function but I have residuial tinging feeling in my head. I have had MRI's, CAT scans, EEG's, and multiple other neurological tests. All negative for anything weird. They come or a set period o time and then they go. They recently started in August after not having them since February. I sometimes feel death has to be better than this but then I think about my children. My daughter says that I should go on Mystery Diagnosis but I tell her that those people have a happy ending. I haven't had one yet. I have been told that my symptoms are migraines, cluster and tension headaches, and then most recently anxiety attacks. I will pray for all of you suffering and you pray for me that we will all find relief someway somehow soon.
Denita Daniels <denita.daniels@yahoo.com>
Rahway, NJ USA
Saturday, October 13, 2007 at 08:15:36 (EDT)

Age 56 Female diagnosed Jan 2006, shadows only/2005, no family history,good help family doctor + neurologist, have preventative meds. verapamil + topamax combo but can't back off without re-occurrences (plus have bite plate as jaw-clench contributes) + oxygen in event of headache, only thing that takes away excruciating pain within few minutes.
Carol Camara <ccamara@uttermorris.com>
Burlington, Ont Canada
Wednesday, October 10, 2007 at 12:30:19 (EDT)

Wow. Just to know that I am not alone is helping keep the Beast down today. I am 46 and just started this. I can only say to some of you that have been doing this crap for years impress me to no bounds.
Rick Greenwood <rik121@yahoo.com>
Eatontown, NJ USA
Tuesday, October 09, 2007 at 13:00:19 (EDT)

Hello all, I have been suffering for about 13 yrs now. Last year I was fortunate I did not have any headaches, but of course it didnt last long. This year they are back, today is my 3rd straight day of pain. As everyone else im scared when it goes away because I dont want it back. God bless all and I'll pray for a pain free day for everyone
luis <lmedina98@optonline.net>
bridgeport, ct USA
Saturday, October 06, 2007 at 09:59:23 (EDT)

Im new to this site and still trying to get a handle what I'm dealing with... Started having CH about 3 weeks ago and I'm basically SCARED... It seems that "Doctors" are either not understanding or basically "Guessing" at what they are dealing with(I can understand that we look like a bunch of DRUG SEEKER) but THIS IS REAL... If there is just "Hope" and noone seems to "Understand" except a fellow suffer... What will work?? It is just "guessing" or a process of trial and error "HOPING" to ward off the next attack?? I am scared to start on this journey but don't know what else to do... Hmm.
bob <cjshriver@cebridge.net>
Ozark, MO USA
Friday, October 05, 2007 at 06:47:47 (EDT)

Hi everyone. I have already enter once and of course talked about my CH's. I also told you that I was seeing a chiropractor. Well it's been about a month or so now and I would like to report on my condition. I have had quite a few good days, I feel almost human again. The headaches have not stopped, but they are almost tolerable now. Once a week they get bad but not like before, an ice pack and walking for 10 to 15 minutes, rocking and they are gone. I have shadows from time to time but I can still function. This doctor is great. My sister goes to him and out of compassion for me she just called him one day and told him the deal with me, he told her he had 8 other CH patients and he has studied on these headaches and yes he thought he could help me like his other patients and he has. I went in, he took xrays and found that my C1 and C2 were sitting on top of each other and smashing everything in between. This is the area that brings on any headache including CH. He showed me the chart that explains everything, compared my xrays and has been working with me since. I get an adjustment, electrodes on the neck and then pressure points massage in the neck and head. When I leave there I feel better. Sometimes when my neck is locked up and does not want to cooperate I feel soreness, usually a bad headache, but the next day, I feel lots better. If you are interested in this chiropractor route, make sure they know about Cluster Headaches, my doctor tells me every time I go (3days a week) that he found something new about the headaches and we talk about it in depth. I really like this guy. I also take Phenergan (25mg-I take half of one) every night to skip the dream (REM) cycle of sleep and I am now sleeping all night long, no monster at night now for a month or more. I hope this will help someone. It sure has for me. Good luck and God speed to all. I will still be checking in every week and thinking of you all.
Debbie <paymaddh@peoplepc.com>
Florence, Ky USA
Friday, October 05, 2007 at 00:27:15 (EDT)

Hi, Please can anyone explain this.... I have had episonic cluster headaches for the past 10 years (32 now) but I have had a 2 year gap until now, im currently entering my 4th week, but something strange happened again that happened 4 years ago, I was at work and I became totally blank, staring into space, I was pale in my face, tears in my eyes and totally weak all over resulting in my legs to give way and couldn't find the energy to even talk. An ambulance was called but by the time I came to hospital I was feeling a bit better, I thought that i may have taken too much sumatriptan..(it wasn't that) BUT the headache started an hour AFTER this... can anyone explain why I colapsed? is it just the force of this illness?
Tony <tony@hodgey.org>
Stockholm, Sweden
Wednesday, October 03, 2007 at 03:47:00 (EDT)

Started on verapamil and it has actually made the CH worse! Anyone else had this happen?
lynette
australia
Tuesday, October 02, 2007 at 18:13:37 (EDT)

This is a message for anyone who suffers from frequent painful headaches. My friend Joel suffered from excruciating headaches that were very short in duration for about two months. He went to see the doctor about this and was diagnosed with cluster headaches. Last week Joel passed away at the age of 22. His cause of death was swelling of the brain and heart failure. Please, if you have been suffering from headaches like these, and your doctor has diagnosed you with cluster headaches....please get a second opinion.
Karli
Rochester, MN USA
Tuesday, October 02, 2007 at 15:00:02 (EDT)

I first discovered this site when first diagnosed several years ago. I began to "eavesdrop" and learned so much. But not enough. I am in one of my worse cycles ever, have taken 21 imitrex injections in the last few weeks. I've been on verapamil ever since my diagosis and take prednesone during cycles. Right now I'm on my second round of 20 mg. (take 3 a day for 3 days, 2 a day for 3 days, 1 a day for 3 days). The HAs are getting shorter & farther apart now, but the fear never goes away. Haven't tried the Oxygen yet but may soon. I am so glad I found this site even though it has taken me so long to actually sign in to the guest book. When I first found it, I was so glad to know I was not alone and that there was a support group.
Janie <janie@pro-inspect.com>
La Porte, TX USA
Monday, October 01, 2007 at 16:09:00 (EDT)

I have been a clusterhead since I was a sophomore in high school. I was lucky that my mom and aunt knew exactly what was going on because my dad suffered from cluster headaches after his stroke. I was on vacation in Minnesota and it just hit. I spent three days in and out of bed, tossing,turning, CRYING, and screaming. It's a lot for a 15 year old girl. I know sleep doesn't work for most, and I wake from it with another one, but the moments that I am out are the sane ones. So I look for them and try to get there. Luckily I had a short spell that time and they went away for two years. Then in 2000, right before I started college I went through the worst ever. Every morning, every afternoon, every night. EVERY DAY!!!! for three months. The doctor wanted to start at square one and get an MRI, just in case I had a weak vessel like my dad had before his stroke. I was good, but by the time that step was through my headaches suddenly stopped. DUH! I was happy, because I was one step away from quitting my job doue to the debilitating atatcks. My boss was upset that I had cancelled two dance classes that I taught in reaction to sudden attacks. No compassion! I have not had such a bad attack since, but there have been short spells. Luckily my life is mostly filled with shadows. I have been going through another short spell this past week, which always illicits further research. Inbetween attacks I start to think that I have made it all up, and I always question my diagnoses, yet I end up in the same point. I mean I have literally pulled my hair for relief before, curled in a ball, rocked without ceasing, etc. I do know what I have, but I think that I hope to read further research and discover it is all make believe. I guess, I just research to know it's real, to know that there are others (though few), to get away from the students I am trying to teach as I am bearing down with the pain I have. Like others have posted I have found a few tricks that help. One is to move, but not erratically. If I move in a pacing way and distract myself I'm good. Also, if I breathe. I just need to keep calm, which is soooo very hard. Finally, when I am able to and it is the worst. I read on another site about temperature. So I tried to take a cool bath with water running over my head and it tends to help. I am joyous to have found this site and to know that I am not alone. I am glad that my episodes are usually paced months apart, but know that others have it worse. I thank you for sharing, and for listening. This site is amazing.
Jayna Rae <Jna711@aol.com>
Victorville, CA USA
Monday, October 01, 2007 at 15:43:57 (EDT)

HI guys, they stared in my late twenties or perhaps at 30. Been through 3 series. I thought I had it beat. It's been over 8 years I believe (atually my wife says it has my memory sucks. I am 47 and they hit me Aug.18 or so. As soon as I realized what was happening I unloaded my guns and gave them to my wife to get out of the house. The good news is I haven't had one today so far. God please let it be over. Hang in there everyone. I know what this is you are not alone!!! Thank god for this site.
Lonnie <llewis@ec.rr.com>
Wilmington, nc USA
Saturday, September 29, 2007 at 22:41:51 (EDT)

Hi my name is Dawn and I am a cronic suffer and have been for 8 years. I have been to many doctors, who keep passing my off to another doctor, which I found so fustrating that I just live with the pain with no help. I never even use to get headaches until one night 8 years ago the most painfull haedache hit. I get them so bad the roof of my mouth even swells with the pressure. I thuoght it was stress at first so I changed jobs sold my house, but of course nothing matters. The only thing that helps me is to keep moving I never usually get one at work because I am constantly moving. After reading some of your entris I will go back to my doctor with the name of some of the drugs that you have mentioned to see if any work for me. The seasons are changing again, the pain is getting worse and more frequent. It is nice to know there is a place I can go to where other people understand the pain and frustration of these headaches. Dawn
Dawn O'Connell <dave.and.dawn@hotmail.com>
Canada
Saturday, September 29, 2007 at 08:44:49 (EDT)

I have been researching Cluster Headaches, and all though I do not suffer from them myself (thank goodness). I thought I would offer a message for all of you. You are all incredibly brave, dealing with one of the worst conditions causing pain unimaginable to the lucky majority. It is a miraculous feat that you manage to deal with this condition, made even more incredible that few understand your agony. I can only hope that effective treatment is created as soon as possible.
Peter Clayton <peter_clayton@hotmail.co.uk>
Kent, UK
Friday, September 28, 2007 at 21:11:41 (EDT)

I am the wife of a sufferer (2005). He has had two attacks lasting about 8 weeks each in the last two years. The first one, he was diagonised with an eye infection (LOL). The second attack, I was out of town. I had never seen him go through an attack until I came from from my business trip. That is when I knew it was something other than an repeat eye infection. I literally though he was going to die on my couch. I felt so helpless. After watching him suffer every night for the next week, I went on a mission to find out what was causing him so much pain. After going to several different doctors (opthalmologist, ENTs, etc)over the course of a month and starting to think we would never know what was causing these headaches, we found a wonderful neurologist in Greenville, NC, who actually gave us hope. He not only asked my husband about his headaches, he also asked me about how they affected my husband. Every other doctor we went to would ask me to sit in the lobby while he talked to my husband. I fell in love with my husband's neurologist from that moment on. My husband has been about 1 year and 1/2 without any attacks, however, he is starting to feel the phantom headaches again. I would like to thank all of you who have had input into this site. For someone who never knew there was ever such a thing as cluster headaches, it has been very informational. To all the sufferers, I can't say I know how you feel, but I can say from someone who lives with, loves, and supports a sufferer, there is a brighter day ahead.
Tina Brown <ccbrown@ecpays.com>
Bailey, NC USA
Thursday, September 27, 2007 at 11:27:34 (EDT)

Suffering for 25 years now. The beast changed through the years. it started with short attacks once a week, now my periods are once in 2 years for a three month period with about 12 attacks a day. My son is 11 years old and is also a patient since he was 4 years old, but lucky enough his pain seems to get less every year. i was crying when he had hirst first attack and saw him screaming, poor thing.
Gerrit
Holland
Thursday, September 27, 2007 at 03:31:54 (EDT)

Hi This site feels as if I am talking to my inner soul...yes this beast is killing me for last 9 yrs...very beginning it was diagnosed as sinus and the medicines never worked..It goes calm for 6-8 months and again comes back with bang for 1 month...goes back and come again...gosschhh...why in the world nobody seems to care about doing some more research on this damn thing...I am really relaxed to see lot of ppl are there like me...This is horrriblllleee pain and feel like breaking my head...my wife feel so much restless to see me suffering... SOLUTIONS WORKING FOR ME: ------------------------ 1. I have learnt yoga which seems to be working for me successfully...which means it is like medicine...I don't say this beast has left me alone...but whereas whenever I get headache...if I start my yoga breathing...it will go within minute as if It didn't occur at all...But I get this damn during different timings during the day, luckily not at night...so the only thing is I don't have some good spots in office so that I can do yoga during the attack...you can check the yoga if available in your area at www.ishafoundation.org. 2. Very luckily somehow I got introduced to a healing technique called Reiki...So whenever I get attack while in home, I will ask my wife to do it...its very simple to do it...belive me...it goes in minute...I am very much thankful to Reiki also..It works like medicine...you can check on google and see where you can learn it... These are the two things which keeeps me living with this beast.. Thanks Gopi
Gopi <gobik@hotmail.com>
Atlanta, GA USA
Tuesday, September 25, 2007 at 11:59:59 (EDT)

I have already posted one comment to this but since researching this website i wanted to post to all of you something new. My husband has been doing the water x 3, the redbull and increased his oxygen as opposed to what the doc said to use and what we read here. Between the three of those tips we got from this website and the ouch website he has not had a full blown headache(with the exeption of last night but that is because he ran out of oxygen) so my advice to all of you is to try this and read the wonderful tips from this website and the ouch website... and thank you all soooooooooooooooooooooo much for your tips, advice and love. we so truly, truly appreciate it. thanks.. lois m.
lois <maughan4@msn.com>
ogden, ut USA
Monday, September 24, 2007 at 23:29:33 (EDT)

I was diagnosed with cluster headaches in September of 2002 after having the worst headache of my life. I started taking axert and midrin for pain. About 2 years ago I was started on Topomax as a preventitive medicine and it has been working----ever since last night. Last night I had another attack from the beast. I would have have gone to our ER but our small town er doctors are on strike. Just my luck. I was forced to take my moms meds combining vicotin, darvocet and naproxen just to get the pain to stop. It didn't. I can usually tolerate pain. I had 2 children without pain medication. Last night I wanted to die to end the pain. I don't remember how many pills I took. I love life and felt so guilty that I was feeing so helpless and feeling suicial. My family I know feels helpless too at times when all they can do is keep my children away from me and keep me safe from myself. It has been about 4 hours since the attack has stopped. I came across your website and feel relieved that I am not the only one out there suffering from these CH. I actually cried when I read the other comments.
Yvonne Garcia <yvonne11179@yahoo.com>
Harlingen , Tx USA
Sunday, September 23, 2007 at 23:10:29 (EDT)

Hi.is nice to know of the group. iam a sufferer. can tell you that i use vails insted of singel dose.
Luis Torres <pegalot@yahoo.com>
Ponce, P.R. USA
Saturday, September 22, 2007 at 15:25:28 (EDT)

Never in my wildest hopes - after suffering horribly with cluster for decades - did I expect an end to my headaches from a product that relaxes wrinkles. I have not had a cluster attack in nearly 5 years - unheard of before. Every time I get warning signals, I check the calendar and sure enough it is time for more Botox. I'm sure Botox is not for everyone, but it is recognized among the medical profession, some insurance companies and FDA. I choose to get Botox injections from a plastic surgeon and therefore don't use insurance, because it is simple, painless and effective. Even though I may still be experiencing cluster attacks, the fact is I don't feel pain. That's good enough for me!
Celeste <celeste@calliopeinc.net>
Scottsdale, AZ USA
Saturday, September 22, 2007 at 13:55:27 (EDT)

Wow!! I need not go into detail about what my husband is going through. He has had two cycles of clusters in 5 yrs. the first cycle we spent day in and day out of the emergency room getting all kinds of tests done. this cycle we know what it is and still with all the meds and oxygen they only seem to be getting worse. He works for the Forest service and is out in the mountains a lot. he sometimes goes through a C-pack of oxygen by 9 am and has to have a coworker bring him home.. It is very very disturbing and sad for all of us. I have been researching my butt off trying to find anything that may help. today i ordered mygone plus which is a native herb.. geeze i will try anything to take him out of his pain. when i showed him this website he started crying because we have been so concerned that maybe his are worse than the average cluster holder and maybe their is something else wrong with him. he was, and i shouldn't say happy, but more relieved to know that their are others that understand his pain. Another concern for us is that this may be genetic. A card reader once told me that my husband was sick.. i told her "nooooo" she said yes he is and so is your son. hmmmm very scary and interesting. i'm glad to have found this website for both of us and truly appreciate all of the great information. thanks so much... a cluster headache sufferers wife.. who loves him very very very much. i will do anything to stop his pain.
lois <maughan4@msn.com>
ogden, ut USA
Thursday, September 20, 2007 at 20:47:00 (EDT)

Hi to everyone, just want to say how pleased I am to find this site, I have been suffering ch for about 15 years now but more frequently the last few years, I thought I was going insane and convinced I had a brain tumour the size of a football trying to break through my skull,nobody took me serious, thought I was just a over reacting female with a migraine! Eventually I was misdiagnosed with Trigeminal Neuralgia and although some of the symptems matched and was given medication which I should have kept in the box to be honest but you will try anything incase it helps! I have just moved areas and have a new GP after witnessing a really bad attack one morning my partner ( I usually move to another room so not not disturb my partner, even though he is a very sound sleeper my head banging and crying would wake him) forced me to ask for a second oppinion rather than just accepting what I thought I had! Soooooo glad i did, he suggested I looked online for more info and I found this site and when i read what other sufferers were going through it was as if I had written it myself! I cried to be honest, with relief that I am not insane and the only one in the world with this raging demon inside my head! I feel a great weight has been lifted off my shoulders and altho I am currently feeling like I have been trampled by a herd of elephants (severe attack earlier today lasting about 3 hours) I feel better knowing there is support out there and I am not alone any more!
Tracie <tracie_whinham1@msn.com>
Stirling, UK
Thursday, September 20, 2007 at 14:49:47 (EDT)

My name is Zack. I am 32, and i've been a clusterhead for about 4 wks. now. I Go for a day, somtime 3 at the most, then wow they keep coming back! Seems like some nights are worse than others and there is never any consistancy. My Doctor diagnosed me with "Cluster Headaches" 4 wks ago and told me. "oxygen would work best if it was affordable, but this was a sickness that would most likely go away after 1 - 5 wks". Hydrocodone and Amitriptyline have been my resort for cure till this session goes away. I've been told that these headaches more than likely will go away for a 5 to 7 yr. stretch, then completley after I turn 50 yrs. of age. The problem is when I get these headaches I don't want to live anymore, and there has been occurances when my medication won't kick in and I find myself taking way past the prescribed dosages and the headache will not kick. These headaches come in the middle of the night when I need sleep the most. I read on some of the home page statements, and I just about cried when I saw so many other people sharing the same pain! I feel and have so much empathy for all with this terrible problem. Best Wishes to All, Sincerey Zachery
Zachery <atozfords@juno.com>
Pocatello, id USA
Thursday, September 20, 2007 at 03:16:16 (EDT)

Hi, my name is Jim. I have suffered CH most of my life. They started when I was 15 and only lasted two weeks in the cycle. By the time I got to a neurlogiest (sp) They wouldn't find anything wrong. I didn't find out what they were till I was 19 andd went to Diamond Headache Clinic in Chicago. I was so relieved to find out what they were. I knew I wasn't just imagining such horrible pain. I still see Dr. Diamond. I am now 47 and have been a remission for 10 years. I started out as a classic, and turned into a chronic CH. I have been given a histimine treatment 4 times. I pray and hope that my CH's won't return.
Jim H <www.jlh5978@yahoo.com>
Winterset, IA USA
Tuesday, September 18, 2007 at 23:16:02 (EDT)

My cluster headaches started in Janurary of 2007. I was taking Chantix to quit smoking. After a week of Chantix around 8:00 pm I developed some strange symptoms. My left eye constricted and closed half shut, my pupil was alot smaller in my left eye, and a headache hit me like a ton of lead. After a few days of the same reocurrence I decided to quit taking the Chantix. Unfortunetly, the headaches stayed with me. I saw several different types of doctors, I ended up seeing a neurologist who diagnosed me with cluster headaches. The first treatment plan included verapamil, steroids, and imitrex. None of those were helpful. I was then put on Nortriptyline (25 mg. a day) and when I first feel a headache coming on I take 2 ultracet for pain. The ultracet works 50-60% of the time. I find that just sitting still and pressing on my head helps. I have different degrees of pain. One night I woke up and immediately ran to throw up. That was my worst experience. Other times if I take the ultracet the headache dicipates within 45 minutes. I am now in my second episode of cluster headaches. The first round lasted three months. I had about a four month break. When the headaches first began I just had them at the same time every night but now I have 2 to 3 a day. So far I am able to manage the headaches with the ultracet and nortriptyline. I didn't see either of these medications listed so perhaps it is something different others can try. Bob
Bob <bobandchrisklotz6@juno.com>
Marion, TX USA
Monday, September 17, 2007 at 10:19:17 (EDT)

Hello and welcome. You have found the best site there is if you suffer from, or support someone with Cluster Headaches. Please join us on the message boards (link on the left). There are many of us who are happy to provide support and experience. pain free wishes to you, nani
nani
Los Lunas, NM USA
Saturday, September 15, 2007 at 20:07:35 (EDT)

Where do I start about 2 weeks ago I woke up around 12:30 out of a sound sleep with the worst headache I have felt in five years. Five years ago I got these wierd headaches that seemed to only come around at night and sometimes in the afternoon. The pain was horrible and I had no idea what they could be from. I thought my eyes were going bad so I went to an eye doctor and it wasn't my eyes. At the time I was working outside so I thought it was from the heat and they eventually went away so I thought they were over. Now five years later they are back and feel worse now.It seems I can't go a whole night and sleep. I wake up around the same time everynight and go crazy cause the pain is excruciating and I don't know what to do. I pop advil like crazy and that dosen't seem to help so I just sit in the dark and think what the hell is going on with my head. I just went to the doctors yesterday and she said I have cluster headaches. I never heard of them before.She perscribed me prednisone (a steroid) to stop them from coming as much and butorphanol (a nasal spray) to help with the pain when they do come. I hope I can get a full nights sleep tonight! I'm glad to see a website where people know what I am going through and I can read what people are going throungh. Vernon
Vernon Velte <Crazyravenfan20@comcast.net>
Baltimore, MD USA
Thursday, September 13, 2007 at 19:16:39 (EDT)

I have been to so many frigin doctors it's unbelievable!! I get on the internet and see cluster HAs. It really ticks me off that I have spent all of this money on doctors and none of them have ever said ANYTHING about cluster HAs. I'm so tired I can't even see straight because I have no sleep from getting up with these things. I actually want to cry because there are actually people out there who are going through the same things that I am, and now I know I'm not just crazy. Does anyone know of a doctor in Birmingham, AL who is familiar with cluster HAs? Please help.
Heather <hevyou@netscape.net>
Remlap, AL USA
Thursday, September 13, 2007 at 12:22:08 (EDT)

I am 56 year old female, chronic sufferer of CH for 3 years now. Have been on many meds, nothing seems to work. I am single, although my sons have come home to help take care of me, since I have not worked for a year because of these nightmare clusters I have. I can not hold a job so therefore no insurance, my doctor works with me, but even he is at the end of help. The boys have seen me go outside and pace and cry, eye swollen shut, crying and screaming with the pain, ice pack to the face, but they really don't understand. Most of the nights they are in bed asleep so they can go to work, (boy what I would give to be able to work), so they don't see the bad ones, the all night ones. I had to even stop my life as I know it. No more hiking, no more going to cook-outs at my daughter's if is hot out, no more daily routine because I never know when they are going to hit. At night I sit alone swallowing pain pills hoping to get some relief but no, not tonight, then when I do get to sleep, I wake up feeling like I died and forget to lay down. I now go to a chiropractor and I am hoping he can help.I have 3 nights without pain in 1 week, but they caught up with the next, 3-4 a night. He told me that when he gets a headache it puts him down for a few hours, can't image what I go through in just one night. I was glad to find this site. When I'm up for the long haul, I click on and just read the entries, just so I know I'm not really alone
Debbie Hodges <paymaddh@peoplepc.com>
Florence, Ky USA
Thursday, September 13, 2007 at 10:05:05 (EDT)

I am not sure where to begin. My wife has suffered from Migraines for years. I am 35 this year and started having problems when I was 34. I thought it was migraines like my wife at first. I have been having episodes on and off since early spring. It is allways the same, I get tossed out of bed at three in the morning. It feels like someone has ran a steel bar through the right side of my head x10. I find some relief in pushing my right eye as far into my skull as possible, using my other hand to beat my temple sometimes for 20 minutes, sometimes for an hour or more. I feel like a lunatic. At first I would get the crap once a week in the spring. It is turning into 2 to 5 a day I am going crazy does this get any better maybe it is not clusters I am not sure I am going by the dr. diagnosis. I thought I might get input from this sight. I have read most of all the entries my heart goes out to everyone with ch.
Glen Wheeler <gwheeler0217@gmail.com>
Greenville, SC USA
Wednesday, September 12, 2007 at 08:13:24 (EDT)

I've been a clusterheadache sufferer for 18 years now. Mine is better known as Bing-Horton's Disease. My symptoms are episodic and manifest themselves once or twice a year. I get skull-popping headaches at the right-side of my head. The symptoms started after I had a powerlifting accident in 1989. I've tried many meds including Maxalt Melt and the now very popular Relpax, but no matter what the pain wouldn't go away. After 2 months of excruciating pain and almost 30 attacks, I found relief after going to a Chiropractor. After aligning my spine and especially manipulating the neck area, I noticed immediate relief from the first treatment. The chiropractor himself doesn't know why the treatment gives relief the CH sufferers, but explained that he suspects it has to do with the aligning of certain nerves that run from your back into your head. I also received accupuncture treatment combined with low electricity treatment. So much for conventional medicine. The painkillers that I took only gave some relief momentarily, but the attacks kept coming daily. One treatment of alternative medicine was all it took to bring an abrupt end to the CH bout. Initially what I experienced in the first days of treatment was a light irritating simple headache. One which I could take 1 caplet of 600mg Ibuprofen and get relief. After 4 treatments all pain was gone. Hope this helps some of you out there. Gregory Arrindell (Curaçao; Netherlands Antilles).
Gregory Arrindell <garrindell@onenet.an>
Willemstad, Curaçao Netherlands Antilles
Monday, September 10, 2007 at 20:18:38 (EDT)

I am 45 and have been suffering with clusters since I was 16 years old. No one understands what I go through. My kids, who are now grown, have watched me suffer for almost 30 years. I am a women who has an extreme high tolerance for pain, but not when it comes to a cluster headache. I've spent thousands of dollars on treatments. I've been a ginny pig for headache clinics in the area. Still every two years they come back. My last episode was four years ago. I thought I was done. Will I lose my job again? Will I be able sleep ever again? I can't do anything. I can't drive. I can't work. I can't keep up with my house. No one can help me. My kids are afraid of me. I wish they would just go away.
Laura <LauraAnn43@sbcglobal.net>
Danbury, CT USA
Thursday, September 06, 2007 at 23:30:55 (EDT)

10 plus years. Had about a 3 year lull. Started up about a week ago. Longer and stronger than ever. Lorcet won't touch it. Cafregot wore out after about two years. Now havePercoset and Valium on hand. Am thinking about Acupuncture. 71 years old and they will render me totally helpless. Must sit on side of the bed in a dark room. Cannot recline for some reason. Left nostril starts to burn, left ear and side of brain start to tingle and I know what is coming. An hour (sometimes more) of the worst pain I can imagine. My neurologist of about ten years does not seem to be up to date. He has only suggested Cafregot and Tobomax. I sugestedthe Percoset and Valium. I am going to begin the hourly water hydration.
JIM <target@pinehurst.net>
Southern Pines, nc USA
Tuesday, September 04, 2007 at 22:07:16 (EDT)

I am back to this site after a 2 1/2 year cluster free hiatus. I thought that they were gone for good but no such luck, here we go again. Last time when I had them I treated them with prednisone, lithium and lidocaine spray. It worked ok but I felt like crap all thru the cluster season. Something that I found during that last round and now again this time that seems to help, don't laugh but it is Luigi's Ice. Eating it slowly and pressing it against the roof of my mouth seems to alleviate my headaches if I do it right after they start. I don't know why & I don't care. Maybe it is a reverse brain freeze. It doesn't seem to work with ice cream the same way. I now have 20 bowes of the stuff in my freezer ready to grab at a moments notice.....also if I soften uppopscicles,mush them and eat them by spoon it works ok also.
scott vickers <scottvickers@msn.com>
W.S.P., MN USA
Tuesday, September 04, 2007 at 16:49:04 (EDT)

I have just taken a first time bout of clusters as i was diagnosed in hospital which was horendous, i do hope this does not come back
margaret hendrie <stronglane@aol.com>
airdrie, north l anarkshireanarkshire scotland
Saturday, September 01, 2007 at 05:11:17 (EDT)

I'm a 43 y.o. male. I had CH for 1st time approx 10 years ago, I took caphregot and predisone, it lasted about a month then disappeared. It's back now with a vengeance. Almost 2 months now. I've been Rx'd everything that anyone can think of except Lithium, which I start tomorrow. I've used oxygen but I'm out, and found it to only be effective once when I was able to catch it at the right time. It runs out so fast and when I tried using it amidst a horrible cluster, it did nothing. I use Ativan to keep calm sometimes. Imitrix nasal spray leaves the worst taste in your mouth and throat you can imagine. It works tho. The injectable is a little slower-acting but saves you the horrible taste. I have a primary physician that's prescribing things, my dad is a retired family practice physician and has also prescribed/recommended things, also he sent me to a neurologist where my MRI (negative for any tumors, etc) was read, also the neurologist Rx'd the Lithium I will start, and a new medicine (pink pills I don't have with me now and can't remember the name) that I'm supposed to take upon onset of a headache, I think they help but give me a very dry mouth. CH is absolutely exhausting. It has sucked a lot of life out of me lately. My wife is and has been amazingly helpful, caring, and understanding. I'm so lucky to have her around!!! I hope the Lithium stops the cycle. I normally have a great active life with my wife and we play in a rock band together. I haven't felt at all like doing music lately, my wife says I'm much quieter and I definitely feel depressed sometimes. I'm so tired of all the drugs and chemicals. I couldn't imagine having chronic CH!!! I feel for anyone with this awful pain. -m
madison <little_alien_51@hotmail.com>
littleton, co USA
Friday, August 31, 2007 at 20:30:10 (EDT)

I'm a sufferer of cluster headaches, my sister brought this site to my attention. It took me nearly 30 years to identify what triggered the episodes for me. I still get them but I'm pretty much in control, thanks to Sheree. You've got my address, I'll talk to you, my name is Andy.I wish I Knew then what I know now.
Andy Perry <monstie@bigpond.net.au>
Wollongong, NSW Australia
Thursday, August 30, 2007 at 09:58:51 (EDT)

Findinh this site has made me feel better. I have been having clusters for 30+ years. When I had the first attack in the 70s a doctor thought it was my teeth and I had lots of my top teeth on th RH side trmoved. It didn't work.I have been on so many drugs for these that I have become immune to the effects of most. The most interesting was rohypnol. The pain would still wake me but if I overdosed on them I didn't care about the pain. I get clusters every 3 years for 6+ weeks 3-4 times a day. Some nights I will have none and I get a great nights sleep but I know I will get flogged the next day. Nothing stops them coming. Imigran injections usually stop the pain for a few hours. Best wishes to you all Kevin
Kevin <eskevad@ozemail.com.au>
Brisbane, QLD Australia
Wednesday, August 29, 2007 at 15:00:30 (EDT)

I have been living with CH for approximately 20 years now. It first started around the age of 15 and was misdiagnosed and treated as sinus infection for about 3 or 4 years. When day at work the pain became so severe I had to go to the doctor and because this doctor had just diagnosed a patient a few weeks earlier allowed him to ppick up on my symptoms. Ever since then I have had my attacks on and off, usually with 2 to 5 year difference in between each episode. So I am amazed to hear that there are people who suffer year after year with CH. I think what has made a difference with the frequency of my attacks is that I was told from I was diagnosed to make a record every time an attack starts. I have done that and it seems that every time my attacks happens they were triggered by me not eating properly for weeks (some days only eating 1 a day). And also that I was not getting 8 hours of sleep (usually 3 to 5 a night). It seems for me over the last 20 years these have contributed to my CH attacks. My attacks also only seem to last for 3 weeks. This is the first time I am hear of attacks going on for 4 to 8 or 12 weeks. I know that my attacks will stop three weeks to the date it started (I am 2 weeks into my current attack). But I have notcied that these attacks are different from the others. This is the first time my attacks are more frequent at night, I have at least 3 at night (some times 4). I have also noticed that the tables that use to work for me don't work as effective as they once did (Zomig, Tonopan) I am now trying pizotifen because it really helped with the last attack. But these drugs are dangerous when it comes to there side effects. Anyway my last tid bit of info may help some one. One thing I do to help relieve the pain is to take a hot towel and press it to my temple and neck and over my eyes carefully moving and shifting the towel to find that right spot that relieves the pain. It helps sometimes and sometimes it does not. For those who are looking for a cure there is none, the only way you can help yourself is to find out what cause your attacks and what treatment method (grugs, oxygen etc) and build up other methods from there. I hope I have at least helped one person. Don't give up.
Brent <stratusphere@hotmail.com>
Nassau, Bahamas
Wednesday, August 29, 2007 at 11:56:22 (EDT)

My husband Dan is a chronic CH sufferer for approx 9 years (diagnosed 4 years ago) the longest he has gone without a cluster is about 5 days and that was a few years ago.. He is on verapamil, topomax and depakote with the Imitrex injections when the oxygen fails. I have read a lot of the posts and anything else I can find about this condition. I would like to know if everyone who has these CH's have them only on one side and have the droopy eye and running nose? My husband's experience is not just one side but his whole head, no drooping eye or runny nose but the pain is of CH proportion. I was just wondering if maybe he has been misdiagnosed since he has the pain of a cluster but no other symptoms and the medication has not done much but maybe make them not happen so much during the day. If it is possible that this is not the right diagnosis maybe we could find another avenue to try and help him. I read the posts of people who have been suffering for 25 or 35 years and when he asks me if I have found out how long these CH's can last I don't have the heart to tell him it could be years I just say every case is different and we will keep trying til we find what will help you. My prayers are with everyone who suffers and for all the families who feel so helpless and scared. If anyone knows of any other conditions that I may be able to research God knows we could sure use your help. Thank you for taking the time to read this.
Cristyn Sommerfeld <tcxi@sbcglobal.net>
ST. CLAIR SHORES, MI USA
Tuesday, August 28, 2007 at 20:59:48 (EDT)

Just wanna say thanks 2 all for some insights on CH. I;ve been taking 2 verapamil 180 mg. once daily for a few days now and two advil liqui-gels every 6hrs. the droopy eye thang is a bummer , but my doc says it don't last ferever, and thats good cause i'm defenetly not me. bright light and sound are also buggin me, an that really stinks cause i like to rock out. sincerly Dan Gamsby
Dan Gamsby <Dang22@shaw.ca>
vancouver, canada
Monday, August 27, 2007 at 15:13:35 (EDT)

I suffered 20 years with episodic CH, until I quit smoking 8 years ago. It worked so well that I'm still amazed it was never suggested to me. I hope you can find your cure.
Jeff <jeff@mailinator.com>
Halifax, NS Canada
Sunday, August 26, 2007 at 22:34:29 (EDT)

i'm not a new visitor. i was a few years ago. i promised you all if i found something that works for me that i would let you all know. well ive been good for about three years now. the thing that seemed to have helped me is allergy shots!!! . a combonation of change of diet,, no alchohol at all,, amitriptilyne to sleep,, waning off that to melatonin ,,and alergy shots!! now i just do the shots and ive been ok.. i hope this may help someone out there,, dont give up ,,and dont buy everything the docs want to sell you,, do your own research!! the thing that clicked with me was clusters are also called "histamine headaches". dont give up ,, love, ed hug.
eddie hug <eddiehug@aol.com>
west hempstead, ny USA
Friday, August 24, 2007 at 04:13:59 (EDT)

I m 35 and had the monster sense I was about 15-16 and was never really diagnosed properly until I was 22. My sessions typically are around 2-3 months long average about 6-11 headaches each day. Then I might have about a 6-8 month break. Never consistent always painful I really want to pull my head off. The pain in the left back of my neck is unexplainable. My wife has done more research and interest of doctors as I have given up on doctors. I really think I ve tried most everything my wife even found this site and told me about it. I really never thought there where this many others who are as unfortunate to be going through this also. My day during a session usually starts as if I go to bed @ 10-11:00pm. I will be dragged out of bed around 1:30 he s got his claws buried deep trying to pull my spine out of my neck keeping my eyes closed I find my way to the BC powder and bottle of water. Sit in living room not to wake wife almost crying until about 3 then all of a sudden it s gone. I can go back to bed to go to work good thing for that alarm clock. Oh no not the electric one that s right he s got his claws buried deep trying to pull my spine out of my neck again. This goes on through out the day. I ve recently changed employment after 10yrs and I m hoping my new employer can be understanding and not think I m B_sing. The other day I went to work had the monster on my 60 mile trip in made it there hoping I could cope with it I took some BC its got to go away. I tried explaining CH I don t think he really gets it? I never really thought anyone did until I found this site. More or less it was nice to let go to people who I feel really do get it. (The monster on the neck)
jason <jason17a@comcast.net>
Naples, FL USA
Thursday, August 16, 2007 at 23:32:03 (EDT)

and by the way - Oxygen certainly saved my life. It helps ten-fold if I administer Oxygen within the first 1-2 minutes (I breathe 16 at first and taper to 10-12 after 10 minutes) and if it ain't all the way gone by the 15th minute - then it is at least tolerable (hehe - I don't if thats the right word...). The exception is "about" every 8th attack - and holy moly - it took three years - but I can almost manage to sit (kinda') through the ones that get past the oxygen. Sometimes the shadows themselves are like torture - especially when they come and go for days in a row - much like russian roulette... OK well I work at home (full-time Google Adsense Publisher) and I just can't imagine if I had to hold a real job - then I would surely play russian roulette for real.
C Stump <charlie@enginejoe.com>
Berea, KY USA
Tuesday, August 14, 2007 at 17:06:17 (EDT)

Chronic - every 3-7 days (but I went 12 days once or twice) for almost 5 years it has been a constant in my life. " I had what I called "eyeball headaches" since I was 15 - BUT... they were just "regular bad" not extreme like now. Then 5 years ago I had a molar pulled, and a root canal on another. 2 weeks later I was a Chronic Cluster Headache Sufferer. Very extreme - it starts in the eye, and it ends in the eye - but in the middle of the headache, the tooth/jaw pain overides the icepick in the eye. My Headaches last 1hr,20 min to 2hr,45min. 30 minutes into the headache I can guage how long it will last by how far the pain reaches from my jaw-joint to my center teeth. I know what a severe toothache feels like - and during the headaches, it's like having 3-6 severe toothaches at the same time. First the bottom, and then the top. When it switches from the bottom to the top - I know I'm halfway done with the attack. I've been to many doctors - and to may dentists - and quote: Nothing wrong with my teeth or jaw - literally said exactly: Perfectly Healthy. And then I found this recently: TRIP TO DENTIST CAN BE A REAL HEADACHE: Neurologists at Germany's University of Muenster have reported a possible link between tooth-pulling and bad headaches. In a study involving two patients, researchers found that neither had suffered unusual headaches until having molars extracted -- but that two weeks after the teeth were pulled, both patients developed severe cluster headaches requiring continued medication. The theory: tooth extraction triggered changes in the brain's nerve tissue similar to those produced by head injuries.
C Stump <charlie@enginejoe.com>
Berea, KY USA
Tuesday, August 14, 2007 at 16:53:50 (EDT)

This site is great
Emma Jenny Taylor <PopQueen886@yahoo.co.uk>
Milton Keynes, Bucks UK
Tuesday, August 14, 2007 at 15:24:42 (EDT)

ASPIRIN - My husband has been suffering from CH for about 20 years. His clusters are very severe and they are chronic and the only relief is from the injections which, unfortunately now only give him about 2 hours of relief as opposed to about 24 hrs when he first started taking them many years ago. Because the injections open up the blood vessels I thought it might be a good idea for him to take an Aspirin every day because it thins the blood. He took one every day for about a year and never had a headache - miracle. We moved house a couple of months ago and the Aspirins got put to one side so he stopped taking them. Whether it is coincidence or not he is now in a Cluster Headache period and suffering badly. I know you might think that taking Aspirin is rubbish but as I said whether it was coincidence or not when he was taking one a day the headaches seemed to disappear. He only takes 75mg a day and from speaking to a Pharmacist this is a safe dosage but if anybody is thinking of trying out the Aspirin theory I would suggest they check with their GP first. My husband has now started taking his Aspirin again as from yesterday and I will keep you posted as to whether they work. Wouldn't it be ironic if it was something as simple as one Aspirin a day that kept the headaches at bay!!! You never know. P.S. Has anybody else tried Aspirin?
Pearl Goodwin <catagalore@hotmail.com>
NORFOLK, ENGLAND
Tuesday, August 14, 2007 at 07:25:20 (EDT)

Hello everyone. My name is Helen I have suffered ch for many years. Started when i was about 10 years old (I was misdiagnosed in hospital where i stayed for 2 weeks), they disappeared when i was 16 and reappeared at 25 (19 years ago). At first I thought i was allergic to alcolhol...then realised it was just a trigger of some sort when i became teetotal (a couple of weeks later). I had suffered silently for many years, no-one understanding. Then I met a fellow sufferer who explained to me what i had and everything made sense. He is a chronic sufferer, and I am a "now and then". However, this summer i have lost about 6 days and nights out of 14 from the beast. I feel wrecked. I suffer left side only, every night i wake. it makes me cry. when the beast goes it leaves me feeling like i've been trampled by horses...my back, my neck, my face. Why has it changed? why has it become so frequent? i don't know. what i do know is i must and will get help. and your site is my comfort, knowing that so many of you understand. thankyou.
Helen Baker <helenbaker62@talktalk.net>
Eastbourne, England
Monday, August 13, 2007 at 17:26:41 (EDT)

I tried the "shrooms" on Thurs night. I went to sleep and finally woke with no headache. Fri, I got 2 headaches, but they only got to about a 6 KIP and Imitrex took them right away. Went to sleep and woke with no headache. Sat. was a very good day with no headaches and no shadows. Sun. I had 3 Shadows, but no headaches and they went away within minutes. Today is Mon. and I feel GREAT! Cycle-Broken!!!
Lonny B. <Lonny44@att.net>
IL USA
Monday, August 13, 2007 at 15:29:14 (EDT)

I'm a 19 yr old female sufferer. I have heard that me being a young woman is rare. I experienced my first "cluster" in '06. I was sitting in class, my junior year of high school, and I felt the color drain from my face. I then got up, oblivious to the instruction in class and crawled up the stairs to the 1st floor. There were sparkles in my eyes like you get from staring at the sun too long, and the walls were no longer white, but yellow. It felt like someone was pushing their thumbs into my eyes as hard as ever. I also couldn't hear. I then collapsed in the floor, as my legs gave out. I was sent home for the day and no one knew what it was. About a month ago I had a 24 flu virus, and every 30 minutes got sick. I then would know when I was going to be sick, because one side of my head would either feel blazing hot or ice cold, and I couldn't hear, and my eyes would go blind with the pain and shooting colors in my eyes. After 12 hours of this every 30 minutes, I was standing up and it happened. I was begging with my mother to let me sit because I knew I was too weak. She wouldnt let me and I passed out cold. I kept having these headaches in the ER and hospital. Finally they gave me something to stop getting sick and the headaches stopped. Although now they are becoming more frequent. Last night I had 2. Although this time my eyes were tearing up and I just kept crying like someone shot me. I just wanted to die. I actually thought I wanted to commit suicide. I never had 2 at once, and I never had one that didnt leave me deaf or blind. They told me at the hospital that there is no treatment. I'm having one now, although not severe, yet. I just wanted to let you all know that I need your help. Email me at dreaming.europe@gmail.com. Thanks for your support. I hope I'm not the only female oddity with a commonly known male disorder. Although, then again, I hope no other person has to suffer, and if I have to go at it along, without my womenly suffers, I'll hold up high. Sincerly, Heather
Heather <dreaming.europe@gmail.com>
Columbia, MO USA
Monday, August 13, 2007 at 14:24:54 (EDT)

My husband is the CH sufferer. Only recently diagnosed correctly after years of suffering, but he found this website. Thank you, thank you, thank you to everyone for posting your information and advice. I know it has helped him so much, he is still working on getting his meds right but all the information on this site has certainly helped him. It has helped me understand what he goes through also and I hope it makes me a better support to him. To all you who suffer, my heart goes out to you and I know you know that your supporters would do anything to help. Again, thank you.
Jane <janegaytan@yahoo.com>
Austin, tx USA
Friday, August 10, 2007 at 21:30:25 (EDT)

MAGIC MUSHROOMS!! Ok, I am desperate. I have suffered from the Beast for 8 years. Luckily, I didn't have a headache for nearly 2 years then a couple of weeks ago, BAM the Demon came back. I have had at least 50 $%#@ing headaches in the last 2 weeks! No more than 3 hours of sleep a night with a headache everytime I go to sleep, and many more during the day. Regular medicine has little to no effect as we all know. After lots of research, I decided to try the "shrooms". So far they worked!!! I am only 2 weeks into my cylcle that normally lasts roughly 2 months. I had 3 headaches yesterday, took the shrooms, and finally slept for 8 full hours and woke up with no headache!!!!!!! I am not a doctor and do not promote any drug use. Shrooms are illegal in the U.S. and can be dangerous. On a personal level, my pain was so severe, I would do ANYTHING, short of suicide to stop my headaches!!! I am not sure yet if the cycle has been broken, as I just did this last night. I will post again in a few days to let all my fellow clusterheads know if the cycle has indeed been interrupted. Pain free days and nights to all! Good luck!
Lonny B. <Lonny44@att.net>
IL USA
Friday, August 10, 2007 at 10:00:59 (EDT)

This site is great
Emma Jenny Taylor <PopIcon448@yahoo.co.uk>
Milton Keynes, Bucks UK
Thursday, August 09, 2007 at 20:28:22 (EDT)

Cluster headaches are the worst!! I feel a twing in the side of my head and I am like PLEASE not again! But, of course, within minutes the left side of my head is killing me! The pain is so bad I want to just die. I push as hard as I can on my temple to relieve pressure, I curse, I pray, I cry, I pace, I lie still, I hit myself, I do anything I can to take my mind off of the pain. Eventually the pain goes away, but I just wait and dread what will happen, becuase I know the pain will return. Imitrex seems to take the headaches away but sometimes I fight them for 30 min. sometimes hours. My doctor put me on Topamax to prevent them, but so far it has not worked. He said it may take a few weeks to build up in my system to stop these headaches from occuring. I hope my doctor is correct and this medicine stops these from coming back. My quality of life is 0 right now with these headaches, and NO ONE on this planet deserves to have to continuously deal with pain like this. I am so releived to be able to talk about this with people who actually understand what it is like! I pray for all of us to overcome this terrible problem!
Lonny Bryant II <Lonny44@att.net>
Peoria, Il USA
Thursday, August 09, 2007 at 09:09:41 (EDT)

i'm very happy I found this site and believe It may give me some answers to questions I have been asking for more than 40 years!!! I have not had the time to read it all as yet but what I have seen is highly promissing.I sure intend to participate!
Claude Carrier <clan67@hotmail.com>
Québec, Canada
Wednesday, August 08, 2007 at 18:16:33 (EDT)

I have always kept to myself with these attacks. (The word head ache doesn't do it for me) A few family members know about them, but I have never real talk about it to much. I have had these for about 10 years now. My remission last a year, and my cycle is about 3-5 weeks long. Any suggestion on keeping track of these headaches? I have struggled to keep track of my cycle, and ever year I have nothing to look back on. I have oxygen and imitrex, and I am getting geared up as much as I can to do the dance again. I have started getting shadows the past two days so I know the beast is coming back. Every year I think I can handle it and to be strong, then I get a little taste of an attack and I am a mess now. It would be great to actually talk to someone who really understands this. Not a doctor or my wife. I know my wife tries, Bless her heart. She has seen some terrible things happen when I get these attacks. But she has never had one of these attacks. I have tried in the past to communicate on ch.com with others and got great responses. I was a little nervous and scared to talk about these attacks. They terrify me and try to ignore it when I can. Now I am not scared, I will be back, hopefully I can make few friends here.
Jason Cox <jasonmissa@gmail.com>
oakdale, mn USA
Monday, August 06, 2007 at 17:44:58 (EDT)

I unfortunately suffer from both CH and migraines. People sometimes ask how I can tell and I have two reasons: my migraines are less painful than CH and they occur one week before I get my period. My CH only happen once a year, from the middle of July to the middle of August. They are the only headache that wakes me out of a sound sleep. Like clockwork at 3am, I dream that I've been stabbed in my eye only to wake with the beginning of a CH. Panic sets in; my body sweats profusely; i run to the medicine cabinet. my boyfriend sits and stares at this vestige of myself that is screaming, writhing in pain, pacing the floors of our bedroom. He tries to help but you know there's nothing he can do. He sometimes calmly drives me to the ER when I have no more imitrex, you know the deal. I however count myself as lucky seeing that I only get an episode once a year. I know that CH is no laughing matter but we should all come up with a comic that depicts our fate, something that might make us laugh while we act out The Dance. I'm nearly out of my episode...the headaches only occur once a day at this point and they're easily aborted with imitrex. Making rent is going to be tough this month because I missed three days last week but I'm still alive! I don't know what you all use when you're having a headache but I can alleviate some of the pain by actually becoming the pain. It's a little Buddhist trick that I learned - if you pretend that you are the actual pain, the pain is somehow lessened. It works sometimes but not others; there's no way you can psych yourself out of a fit completely. Well I hope to chat with you all at some point and wish you all nothing but the very best!
Christina <trotternixon7@yahoo.com>
Kingston, RI USA
Sunday, August 05, 2007 at 16:31:13 (EDT)

Thank you for this site. I first found it several years ago, 2001, in the middle of an attack. Reading others' experiences made me cry in sympathy and relief. For the first time ever (since 1984) I knew someone understood and I truly wasn't imagining the pain I felt. The pain that 'medical experts' seemed to suggest was only in my mind, not my head, with each negative test result. It was a very good thing that I never had a gun in my house. The pain was so incredibly intense, I felt totally helpless, hopless and alone in those early morning hours, it seemed like the only solution at those times. As I have gotten older, my periods of remission have gotten longer and longer. My last (hopefully) cluster was in Feb. 2001. I really want to encourage other suffers to hang in there, I understand and you're are not alone. The pain will go away and it just may stay away for you also.
Linda
Canada
Saturday, August 04, 2007 at 13:46:53 (EDT)

Have made a few post on the message board and I think this website is absolutley the most informative site i have found in the 11 years that i have had clusters. Thankyou so much for being here
Doug Woolard <jdougw@mail.com>
carlsbad, NM USA
Friday, August 03, 2007 at 15:09:37 (EDT)

I have been suffering from clusters since about 1985. I am a 57 year old male. Over the years I have been to numerous specialists who have each given me a different drug"cocktail". I cannot even remember the names of many of them; all I know is that none of them worked. I am now using only oxygen and imitrex injections. My primary care physician has doubled my blood pressure meds but that seems to do nothing either. My clusters have been very predictable over the past 20+ years: every two years, they lasted for three months and usually came at the same time every day:6:45 pm. This time, however, they are different, which leads me to the (false?) hope that they may actually be ending. I have read that one eventually "outgrows" them. Hey, I'm 57, it's time for them to die! This cluster is different in many ways, which is why I am somewhat encouraged. The headaches can now arrive at any time of day but still seem mostly at night and closer to 9-10 pm. Many times I have been able to relax and breathe through them until they abate. In the past I always had to take a shot of Imitrex to end the headache (imitrex takes 4 minutes to eliminate the headache.) I have been in this cluster for one month (two to go?)and have only taken 5-6 shots so far. I have also been concerned in the past about the "rebound" effect of Imitrex and so this time I have tried very hard to use it as a last resort only. Does anyone out there have any experience as to how these demons end? Has anyone been cluster-free for an inordinate amount of time? I also wonder if anyone has any experience with Depacote. My neurologist gave me a Depacote drip (1 1/2 hours in infusion therapy)two years ago and my clusters ended shortly thereafter. However, the cluster was due to end somewhere near that time anyway, so I don't know if it was the meds or just the normal end of the cycle. Any insight or anecdotes about how clusters die would be most helpful. Wayne LoPresto
Wayne LoPresto <wlopresto@capecodfive.com>
Orleans, MA USA
Thursday, August 02, 2007 at 11:41:01 (EDT)

My husband has suffered since I met him. Last year we looked for info online and must have somehow missed this site. I'm glad to have found a site that everyone knows what's going on. It drives me nuts that I've had to explain clusters to all but one person I have ever met! You all know that can't be done. I just simply say worse than a migraine and leave it at that. It feels good to finally have some kind of connection with others who understand.
Sally <sale_collins@hotmail.com>
Kewaskum, Wi USA
Wednesday, August 01, 2007 at 08:58:27 (EDT)

Chronic sufferer for 5 years, 5 out of every 7 nights I wake up with pain. Oxygen and Imitrex shots are my immediate cure, and when I need to travel I use prednisone. (Interesting side note, my mother suffered from episodic cluster headaches for 50 years.)
Connie Francisco <Conniet@mallonblatcher.com>
Berwyn, PA USA
Tuesday, July 31, 2007 at 13:51:55 (EDT)

Hello and welcome. You have found the best place to be if you suffer from (or support a sufferer) of CH. On the left is a link to the message boards. There are people there who can offer much support and information. Join us! pain free wishes, nani nani Los Lunas, NM USA
nani
USA
Sunday, July 29, 2007 at 18:55:43 (EDT)

Thank you for this website. First time in my life I began to understand what my headaches really are. I never met anyone before who could understand what I'm talking about.
Peter (Interceptor) <honda_rider76@hotmail.com>
Novi Sad, Serbia
Friday, July 27, 2007 at 06:02:46 (EDT)

I recall my first hits from fall 2001. I thought I was going crazy; how could pain be so bad? And they got worse. I've been chronic and now episodic. Finding clusterheadches.com has been a life-saver for me. Those of you who see this, why don't you check the main board and join the message boards and find lots of more information and people who know exactly what you're dealing with? My fellow clusterheads, feel free to email me. Wishing us all PF (pain-free) days & nights, Sanna/sandie99
sandie99 <sannahillu@hotmail.com>
Jyväskylä/Hki, Finland
Friday, July 27, 2007 at 05:47:22 (EDT)

Hello, my name is Joe, and ive been a cluster headache sufferer for about 10 years now. I usually go about a year to 18 months without a CH. Man, where to begin? I usually get my headaches around the spring/fall time of year. But this time they came in the middle of the summer. Im going through a cycle right now for about 4 weeks, and mine usually last about 6-8 weeks so i can see a tunnel at the end with a shining bright light. People just dont realize that when you have this type of headache you just can't function. Ive been off of work now for 3 weeks, and totally feel helpless. I remember the other night towards the end of all the madness, i just broke down and started crying like a baby. Seeing a 33 year old man crying on his knees may seem funny to some people, but anyone with this pain understands. Earlier in the night, i felt the shadows start to kick in. You know the burning behind one eye and skull, and inside of your ear, and then all of a sudden BAM, it hits and your chewing Exedrin like tic tacs and pacing like a loon. I just want you all to know, im with you, i understand what your going through, and if anyone needs to talk about this terrible headache, im here for you. I included my email address for anyone wanting to talk about CH. Im going to join this site because there seem to be alot of people here i can relate to. But im having trouble with the code. If anyone can help me with the code problem, email me. Thanks for listening.
Joey B <Metaicreature@aol.com>
Reading, PA USA
Friday, July 27, 2007 at 00:49:25 (EDT)

Well kids, I'm officially in! I started out episodic for between 1 & 2 years. By the time we figured out what was happening to me I'd become chronic. I've been chronic for 2 or 3 years now. My remission (days with no clusters) is nomally 1-4 days at best. The beast is by my side the other 360 days of the year. Don't (swear word) give up! Hang in there people. My thoughts and prayers are with each and every one of you.
Steve DeMars <munts@centurytel.net>
Scappoose, OR USA
Thursday, July 26, 2007 at 12:58:14 (EDT)

well hello,this is my first time on this site,and i'm so glad i found it!!!i can feel another headache coming on and i'm ready to cry....i have a child and i do agree that this can be worse than birth..really.i hate when i wake up at 2am with a headache because my boyfriend has no idea how much it hurts,and he doesn't know what to do or say,but there's nothing you can do..i woke this am with onw literally crying,ready to go to the hospital,i would not wish these headaches on my worst enemy!!!! well i'm glad i was able to write
sofia <kaylisdad@aol.com>
enfield, ct USA
Wednesday, July 25, 2007 at 08:50:34 (EDT)

43 years old,CCH for 3 1/2 years,thought I was alone,come to find out someone does understand.I'm very grateful for this site.
Dave
Mesa, AZ USA
Tuesday, July 24, 2007 at 20:06:39 (EDT)

lucky me that i found your site.my name is Theresia and i,m suffering from clusterheadaches.it mostly happens during the night 1am. and 3 am.the devil comes to me and is trying to split my head.all you sufferers out there,i know that i,m not allone.my husband is very supportive.
Theresia Kuerlemann <hkuerlem@tampabay.rr.com>
Homosassa, Fl. USA
Tuesday, July 24, 2007 at 12:06:37 (EDT)

26 years old and have been dealing with CH for 10 years now but just recently got diagnosed, FINALLY!! Keep up the good work with this site : )
maria <mariboy2006@yahoo.com>
Austin, TX USA
Sunday, July 22, 2007 at 10:22:35 (EDT)

Hi my name is Natalie, I am a nurse and my husband just recently got diagnosed with CH. It has been two weeks. It is great to find this site, but I am astonished at how soo many people have this and for how long they have been dealing with it. I feel like I shouldn't even complain, but I am losing my mind. I am so stressed seeing my husband go tru this. He fears going to sleep. We are going on 6 nights straight. I feel terrible that I can't help him. We are going to attempt to get O2 for him. We live in Florida. We also have a trip(planned since last year) to Colorado and we are worried about the plane trip and the altitude in Colorado. My husband does not want to cancel, he wants to try to go and relax and SSLLEEEPPP!!! Any suggestions . I'm feel so ba d for all the Ch sufferers and their family. Thanks for listening. Nat
Natalie <natmat21@hotmail.com>
Miami, Fl USA
Sunday, July 22, 2007 at 10:07:57 (EDT)

I suffer fom cluster headachs for 26 years(cronic),at present its very bad ,to prevent a bit I using 'Cafergot' Ergotamine tartrate 2mg Caffeine 100mg I use to live in the UK thats were it started I have seen a hundred doctors but no one can help . Your side is intrsting and perhaps it helps me ,Many thanks.
G. Speekenbrink <Gerardus@hol.gr>
Rhodes, Rhodes Greece
Sunday, July 22, 2007 at 04:12:24 (EDT)

My son suffers from cluster headaches. Has anyone had success with Sinus Buster? The website (sinusbuster.com) sells a capsacin pepper product that it claims is quite effective. Any comments?
liz <tizzieo@hotmail.com>
Columbia, mo USA
Friday, July 20, 2007 at 19:27:31 (EDT)

My husband was told today he may have C.H.. After 2 years of maybe it is Myasthenia or Blepharospasm ( eye is shut tight or 1/2 shut) but it all started with pain in head about an hour after he went to sleep. He went to family doctor then an optometrisist then Neuropthalmologist then neurologist, it seemed it was easying up some in 06 eye was shut 9 days at one point but that was not to bad, the headache were there but he could deal with them he is on 14 pills a day. will on June 28th the pain was right back to stabbing him in the right temple. His whole right side of face feel like it weighs a 50lbs. he said, and the eye has been shut this whole time. So today back to the neurologist and he told us he now feels it is cluster headaches we have never heard of them. He told me to look it up online so here I am. I have a question does any one's eye shut like this with C.H.? Also the first day it hits him his body is drained he sleeps like 23 hours. Then he is still tired all the time with the headache. He is talking about have the doctor put him out of work and on disablity ( He is a maintenance man) but we will not have the insurance to pay for his meds. if this happens. My job closed up so I'm out there looking to help. Has anyone dealt with trying to get disabilty for C.H.? I just wish we new for sure what is going on the more I read here I think this maybe it, or atleast part of it. Thanks for your time, sorry so long.
RENA <puppylove41@gmail.com>
USA
Thursday, July 19, 2007 at 15:31:35 (EDT)

I am a cluster headache suffer who is looking for relief.
Kennith Harris <bigkenny@kennith.org>
Agoura Hills, CA USA
Wednesday, July 18, 2007 at 15:09:27 (EDT)

My son (23 years old) has suffered from cluster headaches for about five years. Can anyone tell me of their experience with verapamil (a calcium channel blocker) as a preventive medication? I am particularly concerned with it lowering his blood pressure too much. Any comments will be appreciated.
Robin Schwartz <robschwa@umdnj.edu>
Highland Park, NJ USA
Monday, July 16, 2007 at 22:35:26 (EDT)

I have been suffering from cluster headaches for about 10 years now. I am a 38 year old women who just started training for her 1 st marathon....noticing the clusters coming an hour after a training run. I have not had these for approx 3 years and, sadly, the beast is back. I am trying a round of prednisone again. It seemed to work last time...
heather <heathames@yahoo.com>
sherman oaks, ca USA
Sunday, July 15, 2007 at 22:25:02 (EDT)

I found a solution to all my CH suffering. Done lots of research on use of magic mushrooms to stop the cycles and tried it. IT WORKS!!! The cycle stops completely. I even tested it afterwards by having a few beers, a usual trigger and nothing. What a relief! Havard Medical is performing studies. Just search cluster headaches and mushrooms to find tons of information. I don't promote the use of drugs but will do anything to stop the suffering. Good luck. Jeff
Jeff <bischoffjeff@hotmail.com>
Lufkin, TX USA
Monday, July 09, 2007 at 13:20:12 (EDT)

My partner suffers form Cluster headaches. I have been searching the web for info and came across this site. I t is very helpful to read the symptoms that are reminiscent to those of my partner. She has suffered these attacks for around 20 something years. We never had a diagnosis until around 10 years ago when out of sheer desperation I insisted that she allow me to take her to hospital for treatment. A junior Doctor immedietely identified the headaches as cluster type. That helped a little being able to label the problem. At present my partner is going through hell and back at night, usually when she begins to relax. My heart goes out to you guys who suffer from this terrible affliction. I am in pain when I hear her suffering next door. The worst feeling is being unable to give any relief. I sincerely hope a cure is found. I will certainly be making my partner aware of your site. At present she is going through a 15 day dose of steroid therapy by taking oralPrednisalone 5mg. The course starts by her taking 15 tablets 14- 13 each day until she is down to the last one. There dosn't appear to be any lack of pain yet and this is around her seventh week of suffering. I really hope they dissapear soon for her and all of you. Take care and I hope research brings new hope for all. Lenny
leonard Anderson <leonard.anderson@ntlworld.com>
Glasgow, Scotland
Friday, July 06, 2007 at 17:21:03 (EDT)

Three weeks ago I woke up at 3 am with a headache I had never got before. I jumped up and tried to get down stairs to get my migraine medicaine but couldn't do it i sat down and just started banging my head agianst the wall. I was in tears, and so scared the nearest hospital is 1 1/2 hours away and I could drive myself. Two hours later I finally made it to the hospital and i was fine. Headache was gone. the doctor checked me in and checked me out like nothing happened said to see my promary if my headache come back. by the time i made it home the headache was back, the docters office was still closed so I rolled around on the floor and screamed. I tried the shower but it didn't work i took more mediciane and the pain was still there. I spent the night in the hospital because i had an abnormal CT scan head aches were gone. I am going on my 3rd week suffering from between 14-18 headaches a day usually lasting from 30 minutes to an hour each I haven't slept I can't eat and all this time I've been trying to take care of my 2 toddlers. Any advice Please someone help my I can't take this pain it is not fair to my kids and probably not health for them to witness my fights of pain. E-mail me any helpful Hints!! I am only 20 years old why at such a young age? I so suddenly? What do i ask my doctor? Samantha Blake
Samantha Blake <b-ball_mama@hotmail.com>
Kulm, ND USA
Wednesday, July 04, 2007 at 17:11:43 (EDT)

Hello! I've been suffering for about 3 years! If it's not chronic than I can't wait for my remission periods. It is so good to know that there is a place I can go and vent. I've lost jobs and relationships. I've managed to hold on to my sanity though. Thus far no medications have worked but I find comfort in taking forced tours de pain around my house. Comfort, may not be the right word but it's the best thing i've found so far ... Thanks for being here... BTW, I can't register because I don't see a verification code to transcribe anyone have the same issue?
Kevin <kevinwyattbrown@hotmail.com>
Kansas City, KS USA
Tuesday, July 03, 2007 at 20:59:35 (EDT)

21 years of this crap. I only hope my kids dont have to deal with this. My wife tries to help, but as you know nothing she can do. Im tired of being medicated, and nervous about when the next one is coming. but oh well we just continue to fight through it. just remember all to hang in there.
Randy N <randynielson@hotmail.com>
bakersfield, ca USA
Sunday, July 01, 2007 at 23:48:31 (EDT)

I am a 54 year old black female sufferer of CHs. I was diagnosed by a neurologist some 32 years ago. Last week started my fourth episode of clusters after a 4 year remission. A lot of things have happened over the past four years. My husband divorced to marry someone else after 25 years; leaving me to raise our 17 year old son alone. I lost my job of 20 years, also losing my insurance coverage. My neurologist, whom I haven't seen in the four years of remission; retired. His practice has become very specialized in neurological surgery and they don't even have a neurologist on staff anymore. I just started a new job 3 months ago for a small company that does not offer benefits. So, each night for the past week, I have been awakened anywhere between the hours of 3am - 6pm with these excruiating headaches and all I have available to me are ice packs and Goody powders. These headaches may last for 3 solid hours, or break down for 30 minutes and restart over a 3 hour period. In any instance, I am late for work because it takes me much longer to recover so that I can get up, shower, and go to work. I try to work through the rest of the day with shadows, and spend the evenings waiting in dread for bedtime. The cycle restarts in the wee hours of the morning all over again. I just want some help now finding a doctor to treat me. I don't have a primary physician and can't get an appointment with one until July 15th. I will be a self-pay patient for the first time in my life and I know how expensive the medications are for this horrible affliction (I call it an affliction because I'm healthy as a horse otherwise). Does anyone know of any assistance available for someone like me with no insurance whereby I can get assistance with medication. Oh, by the way, I applied for Medicaid and was denied because I make $1200/month. I am so very thankful to God that I found this website. I didn't know there were so many others like me with this affliction from hell and I've learned more about cluster headache than I've ever known before. Thank you so much for being here. God Bless You.
Gwen <gmarvels_7@msn.com>
Asheville, NC USA
Sunday, July 01, 2007 at 12:49:19 (EDT)

Hi!! My name is Shaun. I am 22 years old and have been suffering with cluster headaches for 9 years. Nobody understands the hell we go through with these headaches. You have to base your life around them. Im just glad I found some people who understand what I go through.
SHAUN <mgg33104@yahoo.com>
christiana, tn USA
Friday, June 29, 2007 at 21:24:20 (EDT)

I was reading thru the message board the other day and ran across one that had info about insurance companys, some kind of code to try and get them to release more imitrex. Cant't find it now. In the middle of a CH run and staying on the computer to long brings one on. Kind of sucks been 5 years since the last run and I forgot all the tricks. Dump me thought they were gone for ever. HA Any Help thanks.
Wes Lafayette <weslafayatte@comcast.net>
Fair Oaks, CA USA
Friday, June 29, 2007 at 12:11:46 (EDT)

Being a wife of a sufferer is as hard as suffering itself. Nothing helps and my heart is torn into pieces...
Kamila <budzynskamila@poczta.onet.pl>
Drawsko Pom., POLAND
Tuesday, June 26, 2007 at 06:55:24 (EDT)

i'm so happy this site is here. my best friend's husband suffers from chs and it breaks my heart to see him struggle as he has not been able to find treatment. (i am sending him this link) personally, i endured what was diagnosed by different doctors as either severe recurrent migraines or cluster headaches as the result of electroconvusive therapy (shock treatment) for my depression. they started in 2005 and are only now remitting. i don't know if i truly have ch or if they are migraines or some weird effect from having shocked my mind--so i'm scared to join you formally for support. still--i'm just so glad people have a place like this to go. i hope you don't encounter intolerance. i hope your insurance companies are more merciful as the days pass. i hope that science and faith offer new remedies for the pain. most of all, i hope that you and those that love you and support you through this horror continue to be strong and rely on the human connection for courage and support.
paperflowers
Monday, June 25, 2007 at 01:18:59 (EDT)

17 years now my friends .. I never took medications .. only the following .. as soon as i am awaken by the devil at 2 AM, I rush to take two tylenols and make my instant coffee then jump up and down 100 times to increase blood circulation to deliver the caffein and the tylenol to the brain then jump in the shower under extremely cold water then warm then cold then warm .. when i am lazy .. I wash my face take a tylenol and wrap Ice with a thin cloth and apply to exploding left temple eye back of the neck .. During my 17 years I noticed that when i lose weight and exercise regularly they are gone .. they tend to hit me when I gain weight and run a non healthy life style .. nothing in the world can describe the relief when its gone or right after the attack .. you are exhausted tired but victorious .. its poetic .. its special its madness its us .. welecome to hell .. it aint so bad only when its running .. god be with us all
Loay <siraaaaaa3@hotmail.com>
Mississauga, ON Canada
Sunday, June 24, 2007 at 05:25:43 (EDT)

If you have cluster headaches take the time to read this. I have done a study on my headaches. I have had them for about 5 years and have found what was making them trigger. If you eat chocolate this maybe what is triggering your headaches. Try this out don't eat any chocolate for about 2 to 3 months and see if they get better. If it works for you to repost it and let me know.
Jason <kidrock1029@aol.com>
Bastrop, La USA
Saturday, June 23, 2007 at 04:02:22 (EDT)

i am 26 years old ive sufferd from headaches all my life but just recently sense i got pregnant with my second daughter ive experience a unimaginable headache i now know it was a cluster headache my goodness it came on so severly and mine didnt just go away im on my 3rd dose of fioricet with codene still with pain but if i dont move fast the pulsating is relaxed my eye was almost swollen shut and tearing like crazy not to mention my runny nose and all the on the right side of my head this is my 3rd cluster in a year i think i could of had them and not known they were common well thats my 2 cents
CHERIE <cherryan289@hotmail.com>
southport, nc USA
Friday, June 22, 2007 at 16:36:48 (EDT)

Hi everyone, really glad i found this web site. I was rushed into hospital on Dec 23rd, 2005 with a suspected brain haemmorage. I came out diagnosed with cluster headaches!!! no 1 gave me any info, just sent me home with a letter 4 my G.P. since then i have been put onto a daily dose of 3mg of pizotifen, but i still get headaches constantly. my partner thinks i put it on as i can be fine 1 min and in agony the next!!! glad to finally see other people know what its like!!!! xxxx
LIZ WILSON <guardianangel666@hotmail.co.uk>
BARNSLEY, south yorkshire ENGLAND
Thursday, June 21, 2007 at 11:16:15 (EDT)

I am in cycle and have been since May 27. BUT! Yesterday I decided to attempt a nap (you know what happens after about 30 minutes of sleeping) well no cluster! The only thing I had done differently was consume 2 cups of coffee (with Splenda and Coffee Mate) just prior to laying down. So last night before going to bed I again tried to cups of coffee. NO CLUSTERS! and I had been having at least 3 clusters per night. Now it is possible that I am just coming out of cycle and the cluster is giving up, but that would be different because the cycles usually last 6 to 8 weeks. It has been less than 4 weeks since this cycle started. Anyway, it's no cure, but it might help others. I will use coffee again tonight. Oh...I wanted to post this on the forum but I use IE 7 so I can't register.
Nevyn <campanella@woodlandstar.net>
Brigham City, Utah USA
Friday, June 15, 2007 at 18:14:31 (EDT)

Hello all clusterheads,Well pleased I found this site!
Richard Scott Armstrong <richnav@hotmail.co.uk>
Aberdeen, Scotland
Tuesday, June 12, 2007 at 16:49:17 (EDT)

For what it's worth, I augmented a new health eating regime with salads at lunch (packed with good tasting meats) and restricted alcohol to weekends. I also quit smoking and have had a singular occurence in Feb. which is off my clock. This counters 4 to 5 per week before. I know it's not much to go on, but I can pray and hope for you others. I will let you know if I see further disastrous results. But I have to take some comfort in the fact that they didn't kick my ass this spring.
Don <don.schubel@gmail.com>
West Allis, WI USA
Tuesday, June 12, 2007 at 00:33:07 (EDT)

Pfff, help I better say. My husband is now in his 4 month with CH and no day is the same. He gets grazy from it. Last Friday was a bat one. in total with shadow 13 hours. No sleep, neither did I. This all takes a lot of energie.moments that he starts to be depressed. When does this stop. Sometimes 4 or more a day. He is so damm. tired. Nothing I can do. and if i could, when he has CH, he will not hear what I have to say. Who's in the same situation, and doesn't know it n'either any more. Maybe we can talk together about it, and find something what could help an other ch-sufferer. God bless you all.Hope for all of you that is will stop soon. Big Hug from me. Jolanda
Jolanda <talako@live.nl>
The Netherlands
Saturday, June 09, 2007 at 17:54:13 (EDT)

My first time here and after having these god-for-saken headaches for over 10years I think I finally have found what they are. I've asked different doctors and they've given me different meds., but these pains keep coming back. Its 1:30am now and I've had a headache for about 3hours so I feel a little better knowing I'm not the only one. Anyone know what I could do to make me feel like not shoving a pencil through my eye. I feel like a baby but these are maddening!
Patrick <paki6575@aol.com>
Long beach, ny USA
Saturday, June 09, 2007 at 00:19:42 (EDT)

I've been suffering with CH for about 10 or so yrs, nothing really helps Imatex works most of the time but can only get so much a month. Other meds I've had tried were Amitripyline and Metoclop and of course pain killers. What brought me to your site was the teasing I recieve at work,( I wanted to show them how much pain I was in and how serious the condition is) they act as if is a little stress headache, they bitched about me missing time so I said I'll go on short term benefits. For any that read this how do you cope with your employer, e-mail me (I'm just a blue collar worker, a number not a name). They just add to the pain...my only saving grace is my ice bags and a caring wife. Thanx Steve
Steven <wolf_359@rogers.com>
Waterloo, On Canada
Thursday, June 07, 2007 at 23:36:44 (EDT)

First posting, so please forgive me if it's a little long; I'll try to be concise. I'm a 38 year old, very healthy woman with a high tolerance for pain...but these last 12 days...a dozen straight days of pain - manifesting behind my right eye, attacking heaviest under the cover of night. I've never felt anything like this, ever. Emergency room on Tues night-nothing they could do. Woke up Wed at 4:30 something a.m. after 2 hours of sleep, seriously thought my right eye had exploded. After washing a matted mess off, mirror showed a couple of blood vessels did pop near the corner. At this point Dr.s say "looks like clusters", "could be clusters", testing ruled out Horner's and stroke (pain down my arm sometimes). MRI tomorrow. I felt "great" at work today, normal. Now...7:20 p.m., here it comes. Waiting for my injured eye to pop out of my head and roll across the floor...does this sound like clusters to you guys? Are these initial diagnosis on track? Appreciate any feedback. And I am oh so sorry that you are plagued by this.
Cory <coryehenson@yahoo.com>
St Louis, MO USA
Thursday, June 07, 2007 at 20:26:08 (EDT)

I have been dealing, suffering, with clusters for over 15 years. I was in remission for two years, but they have come back with a vengence. I always felt like I was alone in this but my wife found this web site and I have been looking it over. I am sad to see that there are so many others who suffer from this &*%$%& pain. I will continue to visit this site on a regular basis. The information I have found has turned out to be extremly helpful.
David W. Klimek <david@hhbeng.com>
Prattville, Al USA
Tuesday, June 05, 2007 at 16:15:35 (EDT)

Sucks to be me.
Russell Halbert <rlhalbert@yahoo.com>
Prescott Valley, AZ USA
Tuesday, June 05, 2007 at 02:13:46 (EDT)

I have had chronic CH for 16 years and i also have migranes i dont know if the two go hand in hand or not.This web site had been the most helpful place for me.I just found it a few days ago and wanted to say thank you so very much.I live in a small town and my doctor tries hard but i never knew about oxygen and a lot of the other treatments on here.I have been battleing a cluster for a month now and am at witts end.I never knew so many people out there had CH.Sorry to hear it but very happy to have found this web site.
Tracy Graves <graves.tracy@sbcglobal.net>
Marshall, MO USA
Monday, June 04, 2007 at 15:48:00 (EDT)

Hi My name is Bevan, I always wanted to win the Lottery but the only time I was selected for a rare experience was becoming a CH sufferer. I'm 58 now and have had several CH episodes that go back to my early thirties. I've been CH free for 10years till last Wednesday. Now I'm getting two to three "mothers" a day. I work in the entertainment industry and worry about the ability to carry on if I get hit with a CH while on stage. If you offered me the jackpot Lottery prize or relief from CH, CH wins hands down.
Bevan <bevan.barker@sonybmg.com>
Johannesburg, South Africa
Tuesday, May 29, 2007 at 04:52:51 (EDT)

I'm thinking "Here we go again". Shadows are happening. Cycle should be starting anytime soon. I'll have a month to a month-and-a-half of fun. After the first couple of days I will be instinctively afraid to go to sleep and won't catch more than a catnap here and there until the beast moves on. I drop by here when I'm heading for the cycle, when it's over I disappear. Kind of like my father in law. When he came home from WWII he just wanted to forget about it all. I'm the same way with my clusters. Only problem, they keep coming back. For the past 25 years. Anyway, I'm sorry you all have to deal with them. For what it's worth, I know they stink.
John DeVito <boombusters@hotmail.com>
Landing, NJ USA
Monday, May 28, 2007 at 22:33:59 (EDT)

Hello everyone,first i wanna wish you all well and hope that sone something can bedone against CH. I'm not the one with CH but my partner. 4 month now, terrible pains. started with one at about 21.45 hour, could handle it wit coffee with cafeine then it was fading away in about 45 min. after that he did get it later in the night as wel or in the morning. Now its even worse. 4/5 times aday. shadows in his heads are staying. With a atake, his mood is totally different. Angry depressed forgetfull wants to be somewhere were it is quit without someone around. Wants to bang his head against something hard, even when its really bet dont wanna live. Nothing as the partner y can do right.can't say something and can't help. You only have to keep your mouth and try not to reacte on what is said. Its so diffecult. Knowing not be able to help, knowing that what is said is not ment. pfffffffff. I wish you all with CH goodluck aswell the partners, fam. around. keep going en help each other. Bless you all. xxxJolanda
jolanda <talako@live.nl>
The Netherlands
Monday, May 28, 2007 at 16:25:10 (EDT)

Well I have been a chronic clusterheadache sufferer for 5 years now. I started out as episodic at age 18, now 9 years later I'm still dealing with this. I now have a husband and a baby boy 19 months- so it makes it a little harder now. I have been on every medication out there. None of them really helped. I did the usual predinsone, lithium, deprokote, O2, nerve block injections, DHE, megisone, indomethicin, sncert, ergo meds, topomax(got the most benefits) etc... the list really goes on and on. Well a few yers ago I started getting BOTOX injections. That had been working for me. That is how i had the time to get married and have a baby. But the past botox i had didnt work. I mean not at all. So we thought i was forming antibodies as we tried a new type "myoblock" this past week and that still didnt work. I am at my witts end. I have been having at least 6 headaches a night for the past 3 weeks or so. It has been soooo bad. I go around hitting my head, banging my head, punching my eye socket in- well thats what it feels like. i am on the floor, in the shower, in between doors, eys is draining, nose is running, i am hotter than fire, you know the drill. It just cant go on like this too much longer. I know it is not custom to get sick- throwing up- but i do. i have a weak stomache. i also am sensitive to light, i know not another characteristic. but im not the average...because i am a young woman, they didnt wantto believe this is what i have. but man did the beast prove them wrong!!! none of the meds worked on me either. i did try the mushrooms years ago when pinky and flask first started posting....it worked for a while. but i could never get enough to finish out the "recommended" dosing. but it did help. now i am trying to grow my own!!!!! how long does that take???? i cant take it that long. So my doctor was talking about 3 different types of brain surgery. And to be quite honest im willing to try anything at this point. I didnt know if anyone knew anything about them. 1. occopital nerve stimulator 2. triginimanal nerve blocks- done with radiation. he says this is the least ne to work and has the most side effects, so we probably wouldnt do this one. 3. hypothalamis gland removed! i would have to go to italy or belgium. so....im not sure if anyone else has heard of any of these surgeries or had them done or recommended. i really am willing to try anything at this point. i just dont know what to do anymore. while i was pregnant i didnt get one headache at all, and i didnt get one until he was 6 months old. i started to get the botox again and it worked until now. i have done all the meds and i dont like them. they never work, cost a fortune even with good insurance, and make me feel like..well icky!! as i said before i have been a clusterhead since 1998. i became chronic in 1999. i had a couple of good yers 2- but i was getting the botox the entire time. i have now bacame really really bad again. i just wanted to clearify that the only reason i have been "alright" was because of botox. but now its not working anymore. i have heard about the studies they are tyring to get approved for mushrooms and clusters. i think it is being brought up to the FDA or something. and if it goes through the studies would be conducted at Mclean Psych, & Research Hospital. how can you get more information and how can you be considered as a possible applicatant.? i was on this message board for years- and loved it- i came back and dont know what anything is anymore. i dont understand the message blog that much. it seems like nothing is new. no new posts i mean. went i went into this area i saw more up to date posts, so that is why i posted all this here. please let me now if i am incorrect. i hope everyone pain free days and nights. and if you have any suggestions- please let me know!@!!!!! Shelby Acevedo Virginia Beach, VA
Shelby O'Regan Acevedo <aqaaqa3@yahoo.com>
Virginia Beach , VA USA
Sunday, May 27, 2007 at 14:44:13 (EDT)

Hi, Just wanted to thank everyone who has shared their story. I am in my 3rd episodic cluster cycle over the last 16 years. I now have three little kids and dealing with CH is hard (but much easier than when I did not have a diagnosis). I am looking for some updated info and will post on the message board soon. Thanks for all the great info!
Sheri
River falls , Wi USA
Friday, May 25, 2007 at 04:46:19 (EDT)

Hey, I have had 7 years to hope that what my dad went through when I was a kid was not what I suffer from. I hoped I had a tumor or a neck problem. I dream of having my right eye shot out. I lay in agony thinking that there must be a way to just remove my right temple. My new husband insisted I go back to the doctor, who needs them they usualy dont figure anything out before the end of the season. Well I got an absoulute diagnosis. I was crushed...thanks dad.
sheila <sjwages@sbcglobal.net>
lodi , ca USA
Thursday, May 24, 2007 at 18:44:29 (EDT)

hi, ive suffered from these clusters myself, and ive taken imitrex by pills, and it usualy gets the job done, but sometimes not completely, and what ive found out that works also, but its just a little bit slower in its effect, is just aspirin with a lot of caffeine in it, now, i can handle a lot of caffeine but i know some people dont and tend to get shaky, so consult with your doc. ok?!?!
mark <stalag101@yahoo.com>
sandiego, ca USA
Tuesday, May 22, 2007 at 14:06:20 (EDT)

Dear All,Nice to see you all,who can understand what this demon actually means!!!Well, I am a new clusterhead,just got this 24 days ago,with all classical symptoms and conclusively diagnosed as CH, I hv been put up under velaparamil and a vasoconstrictor for pain,with less use,recently,couple opf days back, i tried Indian system of medicine,with medicated oil to apply on head stay for 30-45 minutes and shampoo it off,the beast which waked me up in the night has dramatically dissappeared....I am now going to start the first course of internal medicines from end of this week, with omission of non-veg food,any fast food etc, I will keep posting the improvments on this therapy,but, the eradication of the night demon with just this oil application and shower has developed a great faith on the system of medicine,i just hope to get this allright!!!!
rajandra <prasade@trigonltd.com>
coimbatore, tamilnadu india
Monday, May 21, 2007 at 12:21:02 (EDT)

Hi my name is denny from a little village called Lymm in England U.K I have just found this site thanks to my doctor who I attended this morning suffering with YOU guest Cluster Headaches. Ive suffered with them since 1996 had a reprieve for 5 years then had my second attack in 2004 both attacks lasting about 12 weeks. my most recent attack started 20th March 2007, which makes it about 8 weeks in. I am one of the lucky ones after reading some of your stories, and like everyboby say there is nothing you can compare the intensity of the pain with to try and explain to others what your going through. My medicatation at the moment is 60mg Prednisolone steroids and Imigran injections. I must say that reading some of your comments I have learned more about CH and sufferers then ever. Keep the site full of any information that will help in the quest to understand Cluster Headache Sufferers. Denny U.K England
Denny <richmond172003@yahoo.co.uk>
Lymm, United Kingdom
Friday, May 18, 2007 at 12:54:33 (EDT)

Well this is my first entry. I'm a father of almost five and enlisted in the U.S. Army. I'm a bomb tech. i got my first cluster in 2001 when i first got to germany. but wasn't diagnosed until late 2004. I'm lucky in the way that i don't get them everyday, well not everyday of the year. i can go two years with out having an episode. Just my luck though i'm up for promotion and i'm in Iraq and i was supposed to go before the board today and my little troll with an ice pick that lives behind my left eye started chiseling away about 1100 the night before. i now have an ample supply of imitrex and that usually helps me. I just wanted to thank the makers of this website, it nice to find other people out there that share the same problems as you. have a pain free day and night. ben
Ben Brinkmeyer <benjamin.brinkmeyer@us.army.mil>
Edgewood Area A.P.G., MD USA
Friday, May 18, 2007 at 04:52:39 (EDT)

After many many years of suffering from these headaches and taking every kind of drug I could get my hands on and nothing working, I finaly broke down and seen a doctor. (well actually I did before but wasnt diagnosed since about the time I went the headaches went away for a while) I found this site and WOW.. I feel for everyone here that suffers form these headaches. Most people can not even grasp the pain WE suffer.
Bill Browning <brbrowning@earthlink.net>
Stoneville, NC USA
Thursday, May 17, 2007 at 09:39:31 (EDT)

My dad has awful cluster headaches, to the point where hes crying and all that stuff. It scares me, alot. Hes in his late 40's , and i just need some ways to help him with the pain. We turn off the lights, he takes his medication and has coffe, butit doesnt help. I feel awful, theres nothing i can do. Please, give me something to do. Something to ease the damn pain !
sam <skdjuggalette@aol.com>
bostn, ma USA
Wednesday, May 16, 2007 at 21:20:34 (EDT)

i was dianost years ago but never researched cluster headaches ,now i have the dilated pupil and a stabbing pain in one area not the same lasts a few mins and i mean just a few .but nothing like the pain descibed the top of my head feels creepy crawly,and different areas of my haed and face feel like in a vice .and the stabbing pain is just that, like an ice pick stabbed in then pulled out ,sharp and painful at the time .but i dont wont to bang my head ,i can sleep ,and i have never gotten sick my stomache has done a flip when stabbing pain but i have never been sick now i dont know if i have cluster headaches it was a nueralogist that said but i was mast concerned about eye dilating i freaks people out and i deal with the public
catherine <mairi_noble@hotmail.com>
kamloops, canada
Wednesday, May 16, 2007 at 13:42:09 (EDT)

Hi. I've had these blasted things since I was about 17 which would be about 17 years now. I have been to every type of doctor from Neurologist, to Allergist, to Chiropractor and few have given treatment that works, BUT fortunately my own physician found a way to put me in remission that lasts approx. two years before getting another episode. He perscribed a Medrol dose pack (6 day treatment) and it seems to work every time (like 1-2 weeks after I finish the treatment). Also, I have recently found that this energy drink I used to take before going to the gym really helps! It's called N.O. Explode and I get it at GNC. It has caffine and other energy stuff in it, but it seems to take my headache away very quickly, if I take it quick enough at the onset of the headache (I take two scoops). Also I've recently been able to SLEEP ALL through the night and possibly avoid the headache (maybe a coincidence but it seems to work every time I try it), by placing an icepack on the back of my neck when I lay down to sleep even if I don't have a headache at the time. Trust me. I feel for all of you out there. I KNOW what it feels like and it scares the people around me - my family, roommate, friends, etc. It affects my work, energy, mood, excersize, and just living life day to day. I explain what they are and what to do, but everyone is still shocked when they first see me have one. When you explain it, they think "Oh Migrain". A Migrain would be mild compared to this... Only if you've ever had one would you understand. While I've never met anyone else with this "problem", it's comforting to know there is someone that understands what it's really like to live with this. Thanks for reading and hope this info is useful.
Jim <paulyj28@yahoo.com>
Bristol, RI USA
Monday, May 14, 2007 at 17:44:10 (EDT)

I've been a sufferer since my teen years and thought it was nothing more than another illness that I was going to have to deal with until I discovered your site about six months ago. Immediately I experienced the benefits from visiting the site by pretty much gorging myself with water. It seemed to lessen the duration of an attack. I didn't have the funds to purchase an oxygen machine so I figured one way to increase my oxygen was to go for an intense walk ( when possible ) during an attack. That o helped as well. Then one special day my gut lead me to try cod liver oil. I was thinking because water worked so well maybe bad plumbing was at fault ( stomach, intestines ) within 5 min the pain disappeared and after about 5 days my cycle was over. I don't claim to know a panacea but it worked for me and I thank you guys for leading me down that particular path.
Lee Koonce <lemaunk@hotmail.com>
columbia, md USA
Friday, May 11, 2007 at 23:58:37 (EDT)

This site was very helpful for me really didn't realize how many other people suffered with clusters. Thank you so much for this site and all your hard work putting it all together.
Beverly Stallings <bvrlystallings@yahoo.com>
Hurlock, Md. USA
Friday, May 11, 2007 at 19:51:55 (EDT)

I'm an episodic clusterhead for eight years, though I didn't know what it was that I had until two years ago. I'm glad I found this website. I've learned more this afternoon than I thought I'd ever know. Really, thank you.
Amy Ruth <aasruths@aol.com>
Lovington, NM USA
Friday, May 11, 2007 at 18:46:54 (EDT)

Hi guys my name is Lenny,some of you might remember me from the past.Anyways the reason i am writing this is,i just left Dr. Kudrow's office and i am at a kinko's (i wont be by a computer for another 6 hours or so and i wanted to let you guys know about what just happened (i tried to get on the message board but to no avail and i am in a big rush. At Dr. Kudrows office channel 11(kttv)in los angeles they filmed Dr. Kudrow and myself regarding C.H.,the reason they did this is there is a show that is called "house" ( im pretty sure thats the name of it,that will be airing this tuesday 5-15-07 @ 9:00p.m.in the so.calif. area on channel 11,the producer told me its a show on medical mysteries and this one is about clusterheadache's. Hopefully they did a good job on this. Anyway's after the show come's the 10:00p.m. news and thats when they will show dr. kudrow and myself. Hopefully this will bring some exposure to this wonderful disorder that we have. She also mentioned that the rest of the country will be able to see the interview starting on 5-16-07 on their website. If anyone needs anymore inf. you can get my correct e-mail on the OUCH website,thats where the producer got mine (this one has an old one that i tried to change to the correct one,to no avail) i am far from being tech savy and spelling aswell. PFDAN to all
Lenny <lenny58luke@hotmail.com>
los angeles, ca USA
Thursday, May 10, 2007 at 19:36:00 (EDT)

I have had CH for over 20 years. I tried to make people understand the pain is not "just a bad migraine" to not much avail. I'm glad I'm not alone in my sufferings(but I wish we didnt need this site if you know what I mean) I have picked up a few helpful ideas here;Thanks! May all your shadows fade fellow CH'ers
Bill McCraghan <irishindian_10sec@comcast.net>
East Berlin, Pa USA
Friday, May 04, 2007 at 21:25:21 (EDT)

I have just visited this site, for the first time. I do not have any history of headaches, but have been having what was just diagnosed as Cluster Headaches, for the last two weeks. From reading the different entries, I understand that these CH's seem to affect people differently. I myself, have been awakened every night for the last two weeks, about two hours after I go to sleep. I wake with an excruciating pain, that seems to climb from the minute I open my eyes. The pain, only seems to go one direction, UP! Honestly, I can't seem to differentiate between what helps and what makes it worse... Because, everything that I try only seems to worsen the pain. Laying down on my back, laying on my side, standing up, sitting down, just more pain! No relief, nothing!! My headaches seem to start about 1:00/1:30 every morning and last about 3 hours. In researching the information that is available on these, I read that many of the people that suffer from CH's have had a previous head trauma of some kind. I myself, have as a result of a serious traffic accident. I am interested to know how many of you have had previous head injuries? I was originally told that what I was experiencing was related to Acid Reflux, then migranes...only the day before yesterday, by a third doctor, was I told that my symptoms sounded like those of a cluster headache. I've been researching and reading everything that I can, since. I am so tired! When I am not experiencing a CH, I feel fine. No lingering pain, nothing. But after going two weeks without a good nights sleep (something more than 3 hours), I am exhausted! Like many of the postings that I've already read, I too find myself feeling anxious about falling asleep. Fact is, I am afraid to! This pain is like nothing else! I have had serious injuries, some that required surgery. I have worked through painful rehab. Nothing compares to this...NOTHING! So, let me thank all of you that have taken the time to write about your experiences and post information that you have found useful. It is good to know that there are others out there! But unsettling too, to know what is ahead of me... Any advice would be greatly appreciated!! Thanks again! Monty
Monty <mmarshallm67@hotmail.com>
Chandler, AZ USA
Thursday, May 03, 2007 at 20:36:21 (EDT)

Hi Mark I've just read your post below and I have to ask has your neuro not put you on any preventatives such as verapamil? All he meds you have listed are abortives which are great for knocking individual hits on the head but they won't work on blocking them. If you want to come and post on the main board please do and we'll give you tons of advice to help you or feel free to email me. We'll do our best to help you through this! Helen (LeLimey on the boards)
Helen Kemp <lelimey@hotmail.co.uk>
Nottingham, UK
Tuesday, May 01, 2007 at 17:54:10 (EDT)

HELP ME! Just started another cycle after 5 years, last night was the worst pain i have ever experienced from a CH
Francesco Levitt <frank-levitt@hotmail.co.uk>
Basingstoke, England
Tuesday, May 01, 2007 at 07:58:43 (EDT)

It's so nice to know that I am not all alone nor crazy. I have suffered for 10 years now. Years ago I went to every specialist I could and had every test run possible. Nothing prescribed ever worked and after ruling out anurism, sinus infection, ear infection, allergies, and all other possible causes; I was told that I had a degenerate nerve and surgery was my only possibility with little hope for success. Never once was the term "cluster headache" used and I was led to believe I had baffled the entire medical profession and was alone with my 'beast'. For the past 6 weeks I have been plagued by this creature after 9 months of a break. It was the longest I had gone in the 10 years since it started and I believed that it was finally over. Having gone so long without any pain I had forgotten the intensity and have been quickly brought back to my knees. I really believed my brain was going to explode last night and when it didn't I went to the internet. After very little research, I ended up here and I am so glad that I did.
William Hughey <daytonahandyman@bellsouth.net>
Daytona Beach, FL USA
Monday, April 30, 2007 at 21:49:39 (EDT)

Hi my name is chris daugherty and i SUFFER from cluster headaches at least twice a year.They normally last 1-2 months and i get 2-3 a day during peak times.I feel bad for my family when i get them. I have found that hot towels and steam from boiling water either helps the pain or the steam is so hot that i cant feel the headache. I don't know what else to do. Imitrex doesn't help neither does vicodin. How long do these things keep happening? I have been dealing with these for six years now. thanks for listening
CHRIS DAUGHERTY <CDAUGHERTY@RENSENHOUSE.COM>
INDEPENDENCE, MO USA
Monday, April 30, 2007 at 14:26:00 (EDT)

I have been getting CH for 27 years 17 years untreated. I just found this web site reading some of the stories makes me cry.The reason I found this site is cause my CH cycle is back and I'm fighting with my incurance company for Imitrex and I'm in tons of pain 3 to 4 times a day they want 760.00 for 1 system of Imitrex. Do you think theres a little mark up on that? So here I am with no Imitrex and getting 3 to 4 CH a day .It just feels good to get this off my chest I know it don't do me much good but I feel brtter anyway
David Santarelli <Dsantarelli@comfsinc.com>
Naperville, IL USA
Sunday, April 29, 2007 at 17:12:23 (EDT)

im gettin totally pissed off,(sorry bout the language),with these head aches, longest ive gone is about 3 weeks pain free, that was about 4 weeks ago.since then ive had 2 to 3 a day, i started havin them about 18 months ago, an went doctors about a year later, i just thought i was dyin.butnow im on oxygen an injections, it is helpin, cant wait till theres a cure so i have no more,,,thanx for listening
mark finnigan <d.steele@hotmail.co.uk>
Liverpool, uk
Friday, April 27, 2007 at 22:06:03 (EDT)

I have suffered with this for over 28 years. I have been an active member of this site for over three years. Reading your posts in here break my heart. I enourage all of your to join the site, and ask your questions there. We can answer your specific questions much easier there. Now I have read several of y'all mentioning imitrex and other drugs as your means of aborting. Imitrex is good, but I don't see any of you talking about pure oxygen. It is much cheaper, safer, and fewer side effects. It is the one thing that keeps many of us somewhat sane. BUT, it must be used properly, to be effective. See the oxygen tab on the left border. Many have asked how we deal with this. There are three important ways to deal with it, successfully. They are: Attitude; attitude; and finally attitude. REFUSE to let this take over your life. Don't dwell on the hits. Dwell on the pain free time, between hits. I look forward to interacting with all y'all on the board. Chuck
Chuck <csetzco@hotmail.com>
Greenville, NC USA
Friday, April 27, 2007 at 06:27:18 (EDT)

I have just read a dozen or so of the entries on the message board and am both saddened and amazed by the number of sufferers out there. I really wish you the best and a speedy return to your life before the headaches started. I have never dealt with anything that comes close to this pain before. I have only been a sufferer for a few months but I feel as though I have lost them to the constant battle. As some have said it can be scary, unnerving and you really would rather not go to sleep than to awake to a CH. It feels like a ripping sensation to me down the top to right side of the scalp and comes in short intense bursts. Yes I have cried too. I really thought I was going mad at times and it is very difficult to communicate to anyone the awful sensations. I had a CT scan that thankfully revealed nothing but I was petrified since my mother had only had a brain tumor removed 2 years earlier. Anyhow, I want to add some things that have helped me cope so far and may help some poor soul out there. A hot water bottle on the back of the neck after work in the evening does some good for me. I have also been taking a Clonazepam prescription to help with sleep with fairly good results. Unfortunately, I am still taking a steady daily diet of Advil and Tylenol Migrane meds. I try to hold off as long as I can but eventually must give in to prevent a major episode. Reducing stress if at all possible is helpful in prevention I believe. I have tried neck massages which have helped but you will likely need several sessions to get good hopefully longterm results. Be forewarned that the night of the first massage will reignite the pain so have your gear ready to do battle. I probably sound like a wimp (and I admit that) compared to some of the more extreme and long term sufferers out there....I know some of you have gone through some extremely difficult times. Remember one of the most important things you can have is a good friend(s) out there who will help, within their power, when things get really bad. All the best, Rick
Rick <rickcurran@gov.nl.ca>
St.John's, NL Canada
Tuesday, April 24, 2007 at 20:17:27 (EDT)

Oh thank God!! there are other people out there!! I thought I was alone!! It is nice to know that others understand when I say I feel like slamming my head against the wall, cos that's better than the pain.! I've had clusters now for 21 years. First one happened before I left Ireland to come to America in 1986, actually thought I had a brain tumor doctor didn't know what to do with me said I had "migraine" which many docs here diagnosed me with for years! Finally found a great doc. I'm on topomax 125mg (upping slowly 150mg) zomig spray and oxygen (just started oxygen last Friday used 3 times last night did help Also drinking lots of water (also because of topomax, but hope it helps the HA) this site is fabulous I feel like I'm home, and I'm sure I will be prowling around here at 2.00am when I'm afraid to go to sleep. thanks for listening Rosie
Rosie Perry <errojac@comcast.net>
Red Bank , NJ USA
Tuesday, April 24, 2007 at 15:30:20 (EDT)

What a crummy way to ruin a good nights sleep. At least it's gone for now. Good night. Hope your not up to read this.Thanks, Jimmy
jimmy <jimyhertz@aol.com>
port washington, wi USA
Tuesday, April 24, 2007 at 04:31:23 (EDT)

Just reading others words makes me feel better...as im not alone as i feel i am now....thanks all
Anthony Durocher <cockroach815@yahoo.com>
Menominee, MI USA
Saturday, April 21, 2007 at 19:20:19 (EDT)

hi to all, having suffered from cluster headaches for the last years i have been prescribed many medications to try and break the cycle to no avail. the one that does work is imitrex injections my question is as you all know it extrmely expensive and many insurances limit how mnay you can have in a month so does this medication come off the patent and a generic form comes to market. i know this medication is no cure but it certainely beats jumping from my deck. i hope to live forever...so far so good
michael <michael.ellor@gmail.com>
sandy hook, ct USA
Saturday, April 21, 2007 at 08:15:08 (EDT)

I have watched my partner suffer for years and am at a loss as to how I can help???? At the beginning of a cycle he copes amazingly well, but the longer they go on the more abusive and nasty he becomes, apologising so much after, he acuses me of not understanding (i am sure hes right) Please offer any suggestions, as I worry we will end up parting. We love each other dearly.
Claire Hanson <clairehanson@btinternet.com>
Wakefield, England
Friday, April 20, 2007 at 14:54:46 (EDT)

Had my first cluster headache 25 years ago....intervals between bouts have varied from 1-3 years ... This time was 4-1/2 years and I thought they were gone forever...To my suprise at 3;05 am this morning,, woke up witha shock.... I still had one Imatrex injection left...with an expiry date of 2004... I wiated 1/2 hour and had no choice but to use it ,,,, and it worked in about 10 minutes... Went to the Dr today and got a new prescription,, but cant get the old type of injections,,,they had to order the new injector kit ... Does anyone know if the new type of injection can be used more than once like the old ones???I used to use about 1/3 of the syringe ,, and it worked great.... I dont get the new kit until tomorrow afternoon so Im afraid its going to be a long nite,,,so Damn scared to go to bed and to sleep....I can feel the pressure in my head and know one is ready to start...... Sure could use some advice on if there are aany new miracle drugs out yet that will prevent or ease the pain... In the past Ive tried everything that was available and was a guiena pig on one drug trial that was run out of England... Presidone stopped the attacks every time but the side effect were very bad at the high dosage,,, I ate like a pig, scary outbursts of rage,,, and no sleep required for days at a time....Not a good option... Iff anyone has some suggestions I would love to hear.... Thanks so Much Wayne Perry
Wayne Perry <perrywr@hotmail.com>
Cranbrook, BC Canada
Thursday, April 19, 2007 at 23:19:32 (EDT)

I feel like a freak and don't know how to live like this can somone tell me how you do it
Lynn Mason <lynnsie74@hotmail.com>
USA
Thursday, April 19, 2007 at 12:56:18 (EDT)

Hi Eleanor, I've read your posts and if there is anything I can do to help then please feel free to contact me (or get your parents to!) I'd be cautious about letting my daughter contact strangers on the internet so I'd be more than happy if they check me out. I'm English but I am on the Board of Directors of OUCH US and they can look me up there for their peace of mind. I have a 5 year old son with CH as well as suffering myself and I have a 12 year old son with migraines too so I'm in a position to understand your pain and hopefully help get you some treatments that might be more effective. At the very least I can offer some support for you and your parents who must be agonising at what you go through. Keep your chin up kiddo, better days ARE coming! Helen
Helen Kemp <lelimey@hotmail.co.uk>
Nottinghamshire, England
Thursday, April 19, 2007 at 10:56:54 (EDT)

I have had cluster headaches for about 7 years now. I am in the middle of a 2 month episode of attacks. Everday and sometimes 2,3,4 attacks a day. This is by far the worst outbreak yet. A 10 on the KIP scale. I feel like I have NO life. I'm afraid to go anywhere or do anything for fear of an attack.Sometimes they are consistent for days, then out of the blue, I get one out of sequence and they start again hitting at different times. I work nights and my job is cool w/ when I miss work or if I have to leave. The weird thing is I've only had a couple of attacks at work. I've missed one day in this 2 month episode. I feel so depressed that I don't no what to do. Verapimil didn't seem to help and my doctor seemed to think that the imitrex shot caused them to occur more often.I had never been to this site til now. I've read the medical info and alot of the message board. I just want to thank everyone for their info. i know it's not gonna make the pain any less severe but it helps to know there are others that go thru this horrific pain and there is a place to talk about it.Thanks again to you all!!!
Kevin Howard <kevhowie06@yahoo.com>
Mingo Junction , Ohio USA
Tuesday, April 17, 2007 at 00:20:32 (EDT)

Thanks, Jerry, for you inspiring message.
Eleanor
York, - England
Sunday, April 15, 2007 at 10:07:11 (EDT)

Welcome to our little corner of the web, everyone! Come and join us in the message board where you can get answers to questions in near real time, communicate with other sufferers and supporters who have been where you are and just be a part of our family. If you don't want to join us in the message board, but do need to talk to someone, leave an e-mail address here or send an e-mail to Linda at familyservices@ouch-us.org. Gator
Gator <mike.day@ouch-us.org>
Stillwater, OK USA
Saturday, April 14, 2007 at 13:56:11 (EDT)

Thank you so much for creating a place for sufferers to be understood. I had no idea so may people suffer the way I do. It helps to read others' accounts and to know I'm not alone!:) -Dawn in Florida
Dawn
USA
Saturday, April 14, 2007 at 11:40:46 (EDT)

Eleanor, Sorry you are bing hit with migraines. I too had them when I was bout your age, but they went away about the time I started with CH. There are some similarities between migraine and CH, but they are two totally different maladies. CH is caused by a malfunctioning hypothalmus. I do hope you are able to get some relief from your HA's. Keep your chin up and don't let them run your life. You are young yet with a lot of potential ahead of you if you keep your attitude toward them right. Deal with what you have to with the HA and then live your life to the fullest in between. That is what we clusterheads have had to learn to do, so please don't feel sorry for us. Neither of us will die from a HA, so live to the fullest.
Jerry
USA
Friday, April 13, 2007 at 01:42:58 (EDT)

are CH's related to migraines in any way? What causes CH's?
Eleanor
York, England
Wednesday, April 11, 2007 at 06:31:29 (EDT)

You are so brave, I wish I could be as brave as you CH sufferers. A paradox: what is better, eternal bliss or a crust of bread? What is better then eternal bliss? Nothing. But a crust of bread is better then nothing. So, in theory, bread is better then enternal bliss. Would you agree? What is better, immediate relief or eternal bliss?
Eleanor
York, - England
Wednesday, April 11, 2007 at 06:22:24 (EDT)

I am thirteen years old, and, up until recently (like four or five months ago), I have always been perfectly healthy. I have recently been suffering from migraines, with an aura. The aura lasts about twenty minutes to an hour, and it consists of blind spots, like arches, on the left side of my focus. It is extremely frightening for me, since I ve never experienced anything like that before. Then they disappear, and I get a mild headache which lasts for as long as I stay away. I go to sleep, I wake up, and it s mostly gone, although I feel a little odd. It can happen at any moment if I eat irregularly, skip meals, or eat inadequately; it has always started in the morning, about 2 times a month now, and I have missed school and activities more than once. I was feeling very sorry for myself, but now, I m kicking myself. Hard. I went on the internet to try and find a cure or some way of preventing it when I fell on several websites or forums, each discussing migraines. How could I have cried and cried because I only got one or two migraines per month, and all that was really bothering me was the aura and this tiny shell of a headache. I feel so, so, so sorry if you get cluster headaches or headaches every day, and you tried medication. (I haven t even tried medication yet). I want you to know that I feel so, so sorry for you. I won t say anything like don t worry, it ll go soon , or believe me, I have an inkling of what it s like , because it won t mean anything, really. I just hope that you can someday be rid of it, because it does seem like the most atrocious thing on Earth.
Eleanor
York, - England
Wednesday, April 11, 2007 at 05:55:24 (EDT)

I have been getting CH's since I was 19 or 20. I went to a couple of doctors and they prescribed me the typical migrane drugs like Maxalt, Midrin, beta blockers, and you know the rest. Anyways nothing was working. I eventully found through trial and error that taking 800 mg of advil and drinking a ton of water seemed to work. Maybe the advil did nothing but at the onset of a CH I would immediatly take action. Now I am 29 and was headache free for I think about 2 years. They have returned now and the water treatment is not working. My headaches didn't use to wake me in the middle of the night but now they do. They also seem to be more intense now more than ever. Trying to explain the pain I go through to people is very difficult. Most people can't fathom the pain clusterheads experience during an episode. My CH's now lingre for a little while now when in the past if it was over it was over. I was just curious if anyone else has encountered any of the progressing symptoms that I have.
Tom S. <tscanlon@weigand.com>
Wichita, KS USA
Monday, April 09, 2007 at 23:06:55 (EDT)

I got my first Cluster episode last summer, I am 33 years old. After several steps (MRI, Maxalt, Imitrex, Oxygen ect.) the Neurologist finally put me on Verapamil. Verapamil is a blood pressure medication that basically thins the capillaries in the brain. There are no side effects what so ever, and since taking Verapamil I have not experienced a cluster headache (knock on wood). Look into Verapamil or a blood pressure medication and it really should work. Good luck!
Eric Taylor
Rochester, NY USA
Monday, April 09, 2007 at 15:16:45 (EDT)

Comparing with all that's been said right here on this site I might consider myself a happy panda. While a chronic clusterhead (11 years, 1-3 attacks per week, no remission) pain intensity never goes above kip 8, though it tends to last 1-2 hours. I looked through the message board and even though the majority of patented drugs discussed hardly ring any bells for me there are still a few things I will learn. Thank to whoever is operating that. And have a good nights sleep everynight all.
Gytis <jagmort@yahoo.com>
Siauliai, LIthuania
Thursday, April 05, 2007 at 04:53:23 (EDT)

my husband has had cluster headaches for years they come in waves when this is occuring he goes on a round of lithium and prednisone it takes a while to get it in his system but it works for him his last round with them was in 1999 they have started again last night so we will be going back on this for a while.
Rebecca Evans <jlere@tds.net>
Riceville, TN USA
Wednesday, April 04, 2007 at 06:10:21 (EDT)

It's spring--which means 2 things: beautiful weather and a new round of clusters. I know better than to compare my pain with someone else's--it is just bad form, ya know?--but I do feel like I get away with pretty "easy" cycles. The "only" last a couple of weeks. I typically alternate "bad nights" (Kip 8-9) with "quiet" ones (Kip 5-6). The shadow stays all day, but rarely jumps beyond a Kip 4. But in the middle of a full hit, there ain't nothin' "easy" about these cycles. It feels like the pain will last forever--I watch the clock, I take my meds, I pace... and I keep telling myself that it will be over soon. As the cycle progresses, I tend to get pretty edgy and depressed and snap at my children. I just want my oh-so-sweet life back. Gentle hugs (or massive head bangs, should you prefer!), Gina ;~}
Gina
Knoxville, TN USA
Tuesday, April 03, 2007 at 20:06:06 (EDT)

I had my first cluster headache when I was 14. I am now 54. Thats 40 years! For the first 10 years my headaches were always the same. A cluster period would start in March and September. I would get a headache every 2 days always at the same time and always lasting exactly 2 hours. Eventually, in the early 70's, I finally went to my doctor. I was told I had sinusitis. When I mentioned the clockwork regularity I was vertually accused of being an idiot. During the 80's the headaches got worse. Some cluster periods lasted 3 months, with a headache every day lasting 4-6 hours. I had x-rays, antibiotics, nasal decongestants, sinus wash-outs etc. Can you imagine the pain of breathing the steam from a menthol crystal in hot water during an attack. But I did it because the doctors said it would work. And this is the staff at a teaching hospital. One doctor even suggested I had arthritis of the facial bones. In the late 90's a friend showed me a magazine article which I couldn't believe. It completely described my symptoms. It also mentioned imigran injections as the treatment of choice (imitrex to my american sufferers). I went along to my doctors now armed. I was offered tablets and spray at first but they didn't work and eventually I got hold of the injection. At the next attack I injected and waited. Up until then not only had nothing stopped an attack, nothing had even touched the pain, so I didn't hold out much hope. after 5 minutes I felt a tingling in my neck. After 6 minutes I felt the headache disappear. I couldn't believe it. Since then the injection has worked within 10 minutes every time I have used it. I thought I'd found the miracle cure but unfortunately it wasn't to be. Although the triptan removes a headache, it also apparently increases the frequency and intensity of an attack. I am now in the seventh week of a cluster and getting 4-6 hits a day. If I let one run it doesn't lift suddenly like they used to, it lasts 4 hours then changes to a sickening tension type headache. At present I am overdosing on injections, into my first week of verapimal, and due to see a neurologist next week - again I don't hold out much hope. I found this site last week, and suddenly I don't feel so alone.
Mike Fisher <michael.fisher33@ntlworld.com>
Nottingham, England
Tuesday, April 03, 2007 at 18:16:03 (EDT)

Some of you have asked a lot of questions that can be answered on the Message Board or Headache Specific Board. Please take your questions over there. There are a LOT of old timers there who'd be more than happy to help answer you. And I've noticed some comments here that bother me and may be giving some of you the wrong idea and some very bad advice if you're just reading these entries. PLEASE go to the Message Board and read the entries there. There's a world of knowledge over there from people who have suffered for years with CH. So Please come to the Message Board and read, post and get acquainted the the CHers over there. There's support and help there for everyone. Hugs BD
Barbara D <Bdhenderson@hughes.net>
Douglasville, TX USA
Tuesday, April 03, 2007 at 07:34:40 (EDT)

Welcome to Clusterville! I am so sorry that you had a need to find us, but isn't it awesome to know that you are not the only one with this condition?! Please join us on the message board,you can be anonymous. There is a much greater chance of getting questions answered and finding out info on the board than here in the guest book. Thanks for stopping in, y'all!
kathy <skcopelin@sbcglobal.net>
ca USA
Monday, April 02, 2007 at 22:33:21 (EDT)

Hey guys, Back to let others know what helped me and to perhaps get some more vicious replys from people who seem to want to stay in pain so they can be "special". Thanks but I'd rather be pain free and just as "special" as we all are! My CH started in 2001 at age 36 I'm male, hazel eyes and yada yada. Every night for weeks at 5:00am sharp for 45 minutes, just loved the way my mind would decide to wake me up at just the moment before the pain was about to start, and then a rusty ice pick would be thrusted into my right eye, great way to wake up each morning. Anyway I though I was going blind or something until I realized that my attacks were getting worse as I tried to eat better. Fresh veggies and fruit, no caffiene or alcohol. I went to my allergy doc and ask if it was some sort of allergy to food, luckly he was involved in a study in med school about CH and the minute I said 5am sharp he realized what I had. After getting the 411 that basically there is no cure or much in the area of treatment. I still thought that mine got much worse when I ate fresh veggies and fruit, I know it makes no sense. Finally I realized that if I eat fresh carrots I would have the worst CH of all. I gave them up and within 2 weeks I was CH free after 4 years of suffering. Since then I have remained 2 1/2 years free except for the Christmas that a "friend" decided to get me multivitamins that contained vitamin A and Carotene and the CH started to return within a week (not a full attack but those warning shots over the bow that let you know that the monster is contemplating a return). I stopped and slowly the warning shots stopped and have not returned. If you have tried everything else and nothing has worked try giving up carrots and all vitamins that have Vitamin A and/or Beta Carotine. Its worth a shot. Give it at least a month, its free and takes very little effort. I know carrots are supposed to be good for the eyes but that also means they have a relationship. If this works for you please let me know and I will try as I hope you will to help others, I can't be the only person that this would help. My prayers are with you every night, Joe
Joe <joepetersen1@cfl.rr.com>
Orlando, FL USA
Saturday, March 31, 2007 at 11:10:25 (EDT)

Hi.. Im 27 and i thought these things were confined to my past. My Doctor dianosed me when i was 20 after an MRI showed nothing sinister, i.e it wasn't going to kill me.Great!But it doesn't matter much to me when i'm doing tumbles in the kitchen at 3am. Anyway got them every spring for 3 years right on time. I moved to Australia for 3 years and nothing. I'm back home now and 2 weeks ago, just like that, it was back. How can one forget those hot knives stabbing the back of your eyeball! I really think it's a seasonal thing- pollen or sunlight? Thanks to this website i know i'm not a weirdo. I really feel for you chronic sufferers by the way. God speed...
Diarmuid <diarmuidkryan@yahoo.com>
Dublin, Ireland
Friday, March 30, 2007 at 08:53:40 (EDT)

I haven't written for several weeks-been busy with the house and taking care of some of my CH related pain-very boring is pain so I won't go into detail. I've been busy these past few weeks, so I haven't written, not that I think tht it matters much. I was in the hospital for 8 days (got out last week Monday), all cured-ha, ha! During my time away, I've noticed that the website appears to have been cleaned up-never though that I'd see the day! No more attacking people who have a different opinion from the majority! What can be going one? I must confess, however, that the old website waa really fun to read at times-it appeared to me that some paranoid personality disroders were unintentionally revealed-sigh! Now what appears to have taken over is the worship of Red Bull-good for whatever ails 'ya, especially cluster HAs. I don't know, maybe I have a problems, but if Red Bull was such a wonderful things, why hansn't it been tested by doctors, etc.? I trust my doctor and we discussed the issue everal times, so I wasn't drunk (and neither was he) and we came to the same conclusions that, future scientific testing proving us wrong later, Red Bull doesn't work on someone who has true clusters and is in the middle of an attack or has caugh the attack at the beginning, but rather works on those who would like to have clusters and this Red Bull stuff is a perfect way to tell your tale of woe and salvation; we also think that it may work, on a psychological level, with those who do have true CH and who take the RB when the are not having an attack or are having one that is minor and would have gong away on its own, but chugging down the RB at the first minor sypmptoms of a possible attack makes the person feel better-gives them a sense that they are regaining control of their lives when the take RB-certainly nothing harmful in that! Time to go now; I wish you all well and just hope that you tell your docs about using RB and coninuing too take your meds until he/she says otherwise. Just remember that RB is basically just sugar, carbonated water and a few other igredients tossed in, probably to make the stuff taste so horrible-remember, in the 19th century, in the patent medicine days, something tasting bad was supposed to be better for you than something tasting good and I'll bet you won't find a RB type medication that tastes good and claims to work. Anyhow, keep well and I'll keep in touch and make something horrible for dinner and let you know how my CHs react. Yous, HEIDI
Heidi
The Country, USA
Thursday, March 29, 2007 at 10:29:00 (EDT)

Hi...Chronic Cluster sufferer here. Been so bad these past couple of days I'm ready to shoot,but guess that is a stupid option in "normal" peoples' eyes in my world. I surely feel for all with this demon in peak season.
Alex <rbiggs@post.com>
Las Vegas, NV USA
Monday, March 26, 2007 at 16:34:45 (EDT)

Does anyone have any experience with an invasive procedure where they go in and burn the nerves behind your sinus cavity? Supposed to aleviate pain for a person with chronic intractable CH. [Me]
Daniel <twodees2@verizon.net>
Beverly, MA USA
Sunday, March 25, 2007 at 01:33:17 (EDT)

it's 3:36 am, 3/21/07. ch started at 9:30pm. just waiting for the vicodin to wearoff. it's the only thing that works. 750mg every 2 hours till they stop. i have had ch for 27 years. Me and the Doc gave up on prevention. now we treat the pain. I usually get my ch twice a year at the season change, usually lasting about 10 days. then minor outbreaks thru out the year sometimes 4 advil will do the trick. i try useing the vicodin only during the bad times because of how much i have to take. need to go to work in 4 hours and havent sleept yet. (well, maybe an hour and a half since 11:30). this is my seventh day so hopefully only another 3 days or so of this. it's funny, no one but people who suffer from ch can understand the pain, no matter how you explain it or even if they see you during. got to go, hae to take a vicodine, pain starting in 40 minutes, need 20 for meds to work.
Joe <vandolini60@aol.com>
bay shore, ny USA
Thursday, March 22, 2007 at 03:50:12 (EDT)

I'm an age 45 female that has been suffering from Clusters for over 20 years. At the onset of each cluster period, I think I will not make it trough another one. The only med that helps is Imitrex injection, but they will only prescribe 6 shots per month, but I need at least 1 per day. I just wanted to check out this site.
Jill Carroll <j.c.carroll@sbcglobal.net>
Olathe, KS USA
Tuesday, March 20, 2007 at 11:07:49 (EDT)

I thought it was over....I had suffered with CHs from my mid 20's every year from about November to February and they would always hit me about 15 to 30 minutes after waking in the morning. They would last for about an hour or two and would leave the same way they came. Then I turned 30, got married, stopped smoking, drinking and everything else I really shouldn't have been doing, had four children and next thing I know ....wow it has been about 7 years since I had had a HA. Yeah in the past 7 years I thought about it once in a while and just figured it must have had something to do with quitting the cigs or alcohol. I was cured, set free....yeah right, until two weeks ago when I got up out of bed to get ready for church and then got slammed up side of the head with a CH from the past. It was amazing how those 7 years seemed to slip away to the point where it was like yesterday that I had had my last HA. Unfortunately my neuro gave me Prednisone and Topamax which one or both did not agree with me and put me into the hospital where they gave more of a steroid which I thought was going be the end of me. Now a week after the hospital my heart still feels brused and sore from the reaction of the meds and frankly the side effects of the meds are worse than dealing with CH for an hour or two a day. I actually have myself believing that if I get up immediatley and make myself a big cup of coffee and start drinking before any symptoms show that it deters the HAs, but that's how we keep fooling ourselves. I love reading everyone's own personal battles, it is comforting in a sort of sick way to know that others feel the same way. I will Pray for you all and God Bless each and everyone.
Keith Freeman <kfreejr@earthlink.net>
Lehigh Acres, Fl USA
Monday, March 19, 2007 at 23:23:13 (EDT)

I cannot register because of ie7 I cannot get a doctor that understands what i am going through I cannot get any relief. I am told I am drug seeking,Hypochondriac,attention seeking, I am tired so very tired of trying to get people to understand my pain and quality of life. I have been diagnosed by a doctor and a specialist as suffering from CH with not any remissions over the last 12 months. No MD i have dealt with understands the intensity of the pain. I have just been told by the MD that I must come and see him tomorrow before he will treat me. I am tired so very tired maybe now the time has come to stop the madness once and for all
Pottie Potgieter <cosm@mweb.co.za>
middelburg ZA, South Africa
Sunday, March 18, 2007 at 06:48:19 (EDT)

I've had CH since my mid-20's (~30 yrs). The first sign was that a small amt of alcohol would sometimes trigger a killer HA. Then I developed a pattern of 2-3 clusters/yr w/multiple nite hits, mainly between October & March, lasting ~6 wks, w/tolerable daytime shadow pain (but severe sleep-deprivation). Saw a neuro 1x in the 70's who Rx'd Cafergot which never really worked. Also saw an ENT then who tried antibx assuming sinusitis & offered septoplasty (which I didn't do since he wasn't confident it would help HA). Spent years thinking HA's were related to allergies/sinusitis (which I do also have) but was convinced CH is a separate beast when I found this website ~'98. At that time my PCP referred me to another neuro who sadly had no experience w/CH. He Rx'd O2 at my request which does usually help shorten hits (use concentrator dialed to max 10 LPM). The only preventative he Rx'd was Amytriptyline which didn't work. Went into a cycle last month that was esp bad, O2 took way too long to work, so I went on a Prednisone taper & finally got referral to HA specialist. From info I'm reading sounds like maybe I should try Verapamil for prevention, & maybe Imitrex for hits when O2 fails me. The supportiveness of this community is comforting -- wishing you all pain-free days/nites!
Rick Hanauer <rhanauer@charter.net>
Oxford, MA USA
Friday, March 16, 2007 at 21:29:16 (EDT)

Hello All Another update on progress since seeing the Neurologist, decided to talk with my allergist on the possiblity of this being related to allergies. Made the suggestion of testing for food allergies, OH BOY, did that send up rockets. I am happy and sad to say that I am allergic to a number of foods. Since learning this, my episodes have not been as bad and do not last as long. Avoiding the biggies has helped, though have done some experimental slips to see what would happen. Bingo, some hit within 10 minutes and some wait almost 12 hours to hit. Staying away from the things that I am highly allergic to has helped. Not going to list them, too depressing, hahaha. Just know has made a big difference. If you know of an allergist that you can at least talk to about this, could make a big change in your patterns and severity of attacks. Having some nausea with the latest one, not sure if it because of the major change in eating habits or just from being just plain wore out. But will keep trying. Good Luck all wishing for PF days and nights for all mark
mark <tx_gent_46@hotmail.com>
Dike, TX USA
Friday, March 16, 2007 at 03:27:36 (EDT)

Hello to all out there who also suffer this hell. I've been dealing with this crap since October '01 with my longest break from the pain being two weeks. Otherwise its pretty much 4-5 nights and 2-3 days of every week. To this day I can't figure out what it was that stopped the pain, but I'm still searching. And entertaining all ideas for relief that does not involve meds. I've tried Imitrex and everything from 800 mg ibuprofrens (military issue) to booze, vics and darvacets, and nothing really works. Hell, weed didn't even work. The only thing I've found that can really help out at all is controlling sleep patterns, but that only helps for a day or two, and then the hell returns. I've also found that not drinking (booze) is good for decreasing the frequency. I glad I finally came upon this site. I thought I was just being a sissy, hell I was wondering from time to time if this was all "just in my head". Ha ha. Glad to know I'm not crazy, even though with every bout with the beast it feels like i lose a little bit more of my sanity. This is by far the worst pain I've ever fealt, worse than broken bones or a sound ass kicking. I wish more people out there could find this site, sufferers for help, and non-sufferers so they could understand.
nick <nhcress@yahoo.com>
arvada, co USA
Thursday, March 15, 2007 at 16:15:18 (EDT)

I am the spouse of a CH suffer of 20+ years and today I found your site. My husband is going through a bout right now which is so intense that I'm just reaching out for him and myself. He has been very fortunate that he has been CH free for over 3 years, but he is certainly making the time up with this bout. His Zomig isn't touching the pain this time and the frequencies daily are much worse than ever before. I have found a doctor in our area thanks to O.U.C.H. that I'm going to contact because my husbands doctor is treating him basically for migraines and as you all know - there is no comparison between the two. I'm just so thankful I found this website.
Cherie <cherie.murken@tommyarmourgolf.com>
Springboro, oh USA
Thursday, March 15, 2007 at 13:38:16 (EDT)

I am so happy that I was able to find this website. I finally know that I am not alone. I started to get CH's when I was 12. I am 20 now but I feel like I have been having these stupid things for an eternity. I am out of a cycle now, but I dread every night that they will return. In the beginning, I was told that these things were all in my head and I just needed to get over myself. The first time my mom saw me, she thought I was having a stroke and finally took me seriously...lol. 4 neurologists later, I am on a regime of Lithium, Predinsone and major praying. Thank God for all of you for letting me know that I can deal with these and there are other people that understand me. BLESS YOU ALL!!!!! Jessica
Jessica <junechick26@hotmail.com>
seguin, TX USA
Monday, March 12, 2007 at 01:34:38 (EDT)

Hi to all of my comrades...sisters and brothers of my heart. I am new to this site, but not new to clusterheadaches, to put it mildly. I have suffered for 13 years with chronic CH'S...I have not gone past 2wks pain-free yet. Yes, I am serious. I am so excited and humbled and grateful to be here. In all of these yrs, I have not yet ever spoken with ONE person like myself and now I look forward to meeting thousands of you. I hope I can help as much as be helped. I look forward to listening, being heard(finally), comforting and even laughing about the whole damn thing sometimes. We HAVE TO find the humor in it sometimes, if not... I'm also new to the internet. Finally, Im the proud owner of a computer. I'm crawling through how to work it, but I'll get there. Honestly, the major reason I wanted a computer is because of this site...someone told me about it a few years ago and I have been DESPERATE to get on here and FIND ALL OF YOU...I don't have to tell any of you how lonely, isolated, crazy, misunderstood, disrespected and frustrated I have been. I think that's about to come to an end. Thankyou DJ and thank all of you for your letters and for just plain being here. Thoughtfully, Sherri
Sherri B. <VIP-MAIL@comcast.net>
East Norriton, PA USA
Sunday, March 11, 2007 at 16:31:40 (EDT)

35 male. sufferer since age 12. 3 to 4 "seasons" a year that last for about 2 months at a time. doc is on me to take meds every day but when i'm not getting slammed i tend to lay off meds. taking lithium and verapimil, help a little.if it gets so bad that i have to go to er, i'm looked at as if i were a addict. they will put ibuprofen in my i.v. like i won't know. some docs understand and give demerol, 75mg's melts the pain away. go to er maybe 2 times a year. lost wife, kids and about to lose my job. i work nights and they come on right bfore i go to work. 20 mile drive and it terrifies me to get caught on the road with it. just glad this site is here
Dusty <brftrsrpnt@yahoo.com>
Martinsburg, mo USA
Saturday, March 10, 2007 at 15:13:43 (EST)

Campaign updates Keep your campaign page busy to show what s happening with your campaign what you ve been doing, your daily thoughts and all your successes or set-backs. Campaign updates don t have to be big news. Regular updates will attract more attention to your campaign and more feedback from your supporters Start a nationwide debate to expose the dangers to the individual from the introduction of ID cards. The British Government took the nation into the illegal Iraqi war by lying as to the reason. This same government has denied detainees at Belmarsh prison the basic justice inherent in our democratic system to defend those who are 'suspected' of terrorist acts. Also, Home Secretary, Blunkett (at the time http://www.chase-credit-card.all-courtr.com ) allowed thousands of illegal immigrants into this country because the administrators could not cope with processing them. Lies, arrogance and incompetence do not make for good administrators. The Government and Parliament have forfeited their trust and MUST NOT be allowed to impose the power of the State over the lives and aspirations of the British people.
DerekWerter
New York, USA
Saturday, March 10, 2007 at 09:31:34 (EST)

I started getting headaches at the age of 15. I am 41 now. For years I mentioned these headaches to a variety of doctors and all I was put through a series of tests i.e. cat scans, MRI, etc., no diagnosis just the continued headaches. And after years of hearing from doctors that my headaches have never my opinion been properly diagnosed. And I am so tired of hearing, "it is stress, slow down" So I just simply gave up trying to figure out why they come. In fact, for the last ten years I have not bothered to mention to my doctor my headaches because I have no faith it will have a positive outcome. I get all kinds of headaches throughout the year but the one type of headache I get that I just can't seem to find anyone that shares this type of headache is this: I get a headache almost every single time I eat! And please do not suggest food allergies. This would mean I am allergic to all food. I get a headache within five to ten minutes after I eat. Period. It does not matter the type of food or the time of day. In fact, sometimes I feel it coming as I am eating so I stop eating. I have learned, if possible, to plan my meals at a time that I do not have to be functional for the next hour or so. I think my family and friends think I am lying about this because I am the only person they have heard of that this happens to. I am not lying. When I eat, I get a headache. Weird but true. They last anywhere from one hour to three hours. Is there anyone out there that has these kinds of headaches. I have felt like an alien for over ten years now.
Patricia <pabloodworth@htu.edu>
Cedar Creek, TX USA
Saturday, March 10, 2007 at 03:24:01 (EST)

I just Recently Started to get The headaches about 6 months ago they would be one sided and most times woke me up at 2am this caused problems getting up for work when I couldnt get rested for work, which was made worse when the pain returned in the middle of the work day. Then after a month they seemed to go away and I thought it was just from sleeping wrong, boy was I wrong when they just kept coming back. I finally saw a doctor last week and she informed me that I was probaly suffering from Cluster Headaches and she was impressed that I had gone as long as I did without either seeing a Doctor or going to the ER. well it wasn't entirely my choice, no Health Insurance is Bad. Now I know what the problem is she Perscribe a couple meds and it's good to know I'm not the only one out there who suffers, though I would never wish this upon anyone else.
Patrick M. <stapleton_2@hotmail.com>
Reno, Nv USA
Sunday, March 04, 2007 at 00:58:19 (EST)

I want to thank everyone involved in putting this site together, as well as everyone who find the courage to fight this bloody thing. However tough it is for you to pull through a CH bout - don't EVER despair. I have had CH for 20 years and it is this site that my wife and I have to thank for helping us to identify the problem five years ago (as often happens, medical professionals had not been able to come up with the right diagnosis and we had to take the matter in our own hands). As soon as my wife read the comments put on the site by other sufferers, she immediately went, "Look, that's exactly what you have". For me, meds don't do a thing, but oxygen works miracles. Also, it seems to make the breaks between successive clusters longer (they used to be twice or three times a year, now only once). Quitting smoking also seems to have helped (I know, a cigarette or two take the edge off after an attack, but for me it was making things worse in the long run). A couple more practical things - give up spicy foods and alcohol when you have a cluster (as a matter of fact, any ingested or inhaled chemically agressive substance seems capable of triggering an attack), and try not to strain your eyes and ears (too much TV, too much reading, too much driving, loud music - I personally can connect any of these things to CH). I know, giving up all of the above doesn't sound much like life, but it will mean a world of difference when you wake up at 3 am and wish to the Almighty you never had that glass of brandy with you supper. Good luck and thanks to all! Anton
Anton <chakhmou@cc.umanitoba.ca>
Winnipeg, MB Canada
Friday, March 02, 2007 at 17:30:48 (EST)

Hello again, Just a little update, finally went to Neurologist, and he has also been graced with the joy of having "clusters". Although it was some comfort knowing that I am suffering with "CH's" and not something that has to be cut out or zapped, at least he understood what I was talking about. Luckily, mine have started to decrease somewhat in frequency and intensity, they are still here at the present. He gave me some samples of the same meds that he had used, (one) is Zomig-ZMT (5mg)and the other is Maxalt 10mg (these are to be taken when I feel the *beastard approaching). He also prescribed Calan 40mg(which generic is Verapamil) three times a day. Since the Zomig and Maxalt are so expensive have not taken one as of yet..(fingers crossed). He also recommended an aspirin daily and/or BC powder 2 or 3 times a day. Can't say a lot yet, since I was only there yesterday and have not had what I would class as a real severe episode. Came very close to taking one of the "biggies" during the night but held out, used a BC and ice pack and was able to go back to sleep for a few hours. Had been real apprehensive about going to neurologist for fear that he might not understand as I have read here where so many have run into that trouble. The Neurologist is a man that I have known for quite a few years, he had treated my father before he died. This made me a little more comfortable, in knowing him and being known. Was strange because he kept asking different questions about when they started, times of attacks, frequency of same and areas of sensitivity. Do not remember the exact question or statement, but something was said and he stated "You have *cluster migraines* and I have had them also". His lasted six weeks both time and were six years apart. Maybe a little of this will help someone or at least give them something to mention to your doctor. Am having a little bit of one now, fixing to try the icepack and BC method to see if will ease, if not break out the "Big guns". Thanks again for the site, hope someone can get something from this.
mark <tx_gent_46@hotmail.com>
Dike, Tx USA
Wednesday, February 28, 2007 at 13:09:44 (EST)

hi im not a cluster headache suffer but my husband is. actually right at this moment hes about 40 min into an "attack", they usually last from 7-10 days once a day and they usually start at 0130. hes been getting these for the past 4 years and i knew from the start that these were not migraines. we thought it might be a sinus infection at one point in time but something about them just wasnt right. so finally a few days ago i got onto the internet and was looking up anything on headaches i could find, and it was like God was guiding and all of a sudden i saw an article on cluster headaches. i wish someone could have seen my face when i read the symptoms, every single symptom is exactly what my husband does or has! i made sure i printed out the article so i could take it to the doctor whenever i can convince my hunny to go(hes a bit stubborn).i also started a headache log for him too and hopefully he will agree with me to see a neurologist! thanks so much for this web site its a God send!!
cara <caraluchini@hotmail.com>
lima, oh USA
Sunday, February 25, 2007 at 01:59:01 (EST)

Thank you for creating this site. I am a "clusterhead". I was 42 when I had my first attack (3 hits a day straight off with no warning!) back then no one seemed to know or understand what I had, I just couldn't believe the pain, and know-one beleived me; that it was (or even could be) that bad. I was treated with steroids and "Caffene"! It worked! Though there are side affects, but you would give a limb if the pain goes, wouldn't you?
Brett Boag <bb@icepallet.com>
Melbourne, Victoria Australia
Sunday, February 25, 2007 at 00:06:23 (EST)

Hi everyone. Just found this site and came in to say hello. I'm a lifelong Cluster sufferer but I have only just found out what they are. Not that that helps much in alleviating them. Im in a suffering phase at the moment and typing this while getting up the courage to go to bed, Im sure you all know what I mean. Anyway, bye for now. Jilly
Jilly Bowman <jillian.bowman@ntlworld.com>
Cambridge, UK
Wednesday, February 21, 2007 at 18:27:43 (EST)

Each time i increase melatonin it seems to work for a few days and then CH returns. It's as if CH has a life of it's own, doing what it wants whenever it wants. just have to hope the attacks will stop. am on 9 mg melatonin. think it's doing something. Ch has been variable since on this dose. nothing first 3 days then into a pattern of 1-2 each night for 4 days , then 5 (yes 5) in 24 hours, thought i wouldn't survive, but yes here i am. then suddenly nothing for 3 days, with the Ch returning today at an unusual time, 4pm. have to concentrate on the 1/2 glass full - can control the pain with imitrex injection and the attacks WILL stop sometime!!
Stan <downundr@hotmail.com>
NJ USA
Sunday, February 18, 2007 at 23:01:55 (EST)

Where to start? Have been battling what was thought to be sinus infection for close to seven weeks. Trips to clinic weekly, meds, shots and suggestions are a regular regimen. The main nagging problem was this unexplained headachey feeling in the left side of face, waking up in tears and not knowing what the heck was going on. The last visit to clinic, dr ordered catscan of head, and with results suggested seeing an E,N & T spec. A polyp was found, but guess what it is on the right side and too small to mess with. He made mention of "cluster headaches" with all that I told him that had been going on. Also the words, "vascular" and "neurologist" were mentioned. Was given a steroid dosepack to help with sinus infection which was still present. Also, a sleep aid and mild pain med, which I can not tell that these have helped. The sinus infection does seem some better, am on the last day of dosepack... O, by the way, today is Birthday....woopee....sitting here with tears in eyes from the "beastard".... 54 and want to curl up like a baby and cry.....but can't do that. do not really know if I am clusterhead or not, dr. just made the suggestion, but with most all that I have read, things are pointing in that direction...... will decide whether to call e. n. & t. back to schedule neurologist in a day or two.... Thanks for the site and a place to vent.... gl CH's
mark <tx_gent_46@hotmail.com>
Dike, TX USA
Tuesday, February 13, 2007 at 04:02:12 (EST)

Wow, I had no idea there were so many of us. I first got mine (CH)when in the Virgin Islands 24 years ago. It was ten years after that when I finally learned what they were, and no, I didn't have a tumor, thank God for that. I will get them for two or three weeks at a time 5 or 6 times a day. It,s the nites that scare me, that's when they get full blown. groveling on the floor, sick to my stomach, and wanting to die! always on one side, starting in the neck, over the top, and behind the eye. I hord Imatrex when im not getting them because I can't have enough when I do. Had some luck with Cafigot and oxigen to stave them off. I wish I could find a doctor that gets them so were dealing with someone that knows the intence pain. IF--- I would take a jet to Alcapulco and jump off the cliff to not have these, I would do it tomorrow. I would rather break my leg than get a CH, it's far less painful. Any amount of money or time- I have one now and this is getting difficult. God bless you all. Carey
Carey <ludfordelec@aol.com>
Santa Barbara, CA USA
Tuesday, February 13, 2007 at 03:28:41 (EST)

Hello and welcome. You have found the best place to be if you suffer from (or support a sufferer) of CH. On the left is a link to the message boards. There are people there who can offer much support and information. Join us! pain free wishes, nani
nani
Los Lunas, NM USA
Sunday, February 11, 2007 at 23:27:44 (EST)

I have noticed that some of my friends from the site come to this page to occasionally welcome visitors and invite them to join us on the message boards. I would like to add my invitation to any of you that have found your way here, but are hesitant to "join" so to speak. Please do if you suffer or support as there is strength in numbers and we are our own best source for information and research into CH on the planet. I am a 22 yr. everyday chronic and I don't know what I would do without this "family". Come join us, it's free, painless and you always have the option of remaining anonymous. ....tanner
Timothy Rambow <timothyrambow@hotmail.com>
Moore, SC USA
Sunday, February 11, 2007 at 02:04:22 (EST)

Im 21 years old and recently had my first cluster headache.
Claudia
Los Angeles, CA USA
Friday, February 09, 2007 at 17:42:01 (EST)

I ve been suffering cluster headache since 18`s , and just now I m 22 I started to get more medical information. It`s hard to understand why cluster exists , But anyway, I have to overcome my sadness and all that terrible pain. I really do not know anybody close to me who have cluster.From last week until today 6 times at the hospital with cluster headaches. I am happy I found people who have the same problem of mine,and If you please add me at msn to start a conversation I`d be very grateful. msn address - brothergucci@hotmail.com See you guys . Tiago
Tiago <brothergucci@hotmail.com>
Sao Paulo, sp Brazil
Friday, February 09, 2007 at 14:48:18 (EST)

Hi to everyone out there who is CH sufferer. I am not a CH sufferer thank God but my brother who is goes through hell when he's in a cycle. Luckely for him they come every to years always at the same time. Amazing how they know when it's been two years. The one med that has worked for him is imitrex injections, however, the neurologist has told to use it one or twice a day. But what are you suppost to do when you're getting 6-8 CH a day? He had been injecting himself every time he got a Ch and of course it caught up to him because to the side effects. Tightning of the ches, it got so bad he thought he was having a heart attack. Drove himself to the hospital and they told him he was having a panic attack. At the same time, my brother is a heavy smoker which he found out when your in a cycle it brings them on and also alcohol does the same thing. If he drank a beer he knew one would soon follow. Needless to say he doesn't dreek and has quite smoking cold turkey. Now he's taking Percaset which really doesn't do much and the neurologist was reluctant to perscribe due to people getting hooked on them. Now he just tries to fight them because the O2 doesn't work for him either. Just wanted to share this with whoever is out there and know that my thoughts and prayers are with you all. Like I said I don't suffer but it is horrible to watch my brother go through this and to hear him express himself and how he feels.
Alice Eusebio <jovinex@yahoo.com>
mississauga, on ca
Thursday, February 08, 2007 at 13:56:45 (EST)

I have just been reading through the guestbook here and I really feel for some of the sufferers out there that experience more than one episode per day it must be so draining and debilitating. My condition kicked off back in 2000 and although it was fairly sporadic it lasted for over 12 months then hit 2 years later and what Jeff wrote on the main page of this site is exactly as described as you all know. There are a few things I have taken note of that trigger off the condition (in me anyway) and that is the consumption of alcohol and a larger then usual sugar intake, or hypotension. No amount of pain killers curbs the condition and I have found although it is far from easy is to try and keep calm and get as much oxygen into your system as possible (without hyperventilating) My attacks last just over an hour nearly every time, I also noticed going straight in the shower and sitting on the floor and varying the hot and cold temperature whether this is just a placebo effect it does help reduce the pain although only minimally but every bit counts right? Anyway, my info may not be much but if it can reduce the pain factor of one sufferer by a few percent then it is a lot.
Stu <vk4vfxstu@hotmail.com>
Jimboomba, QLD Aust
Thursday, February 08, 2007 at 03:21:31 (EST)

I started to get my clusters when I was 36. What's weird my brother who is 3 years older than me started getting them around the same time and was diagonised immediately. I went for 4 years before I was finally diagonised.I went through sinus surgery cause the doctors said it was my sinuses. So I had my sinuses rottorutted. It seemed to help for about 6 months. I tried all kinds of different things. Chiropractor, dentist, eye doctor just to rule out every possibility. My husband at the time now my ex said I was just putting on a show. Oh How wrong he was. I always said I'd never wish these on my worst enemy but you know what I think I'd wish them on him just to let him see how bad the pain really is. Any how I was finally sent to a neurologist and she told me I had cluster headaches and she also said women rarely get these things. Oh great and I just had to be one of those rare women. I was put on medication of Calan SR and it actually worked. Then for some reason you couldn't get it anymore and they sent me Verapamil which didn't work so they switched it to Veriapamil SR which worked. Now the transission period between these I did get headaches but after that I was fine until just recently. My perscription company decided to change me again to veriapamil ER which they say is the same thing well my head's telling me different. I started these meds last Thursday night and have had a cluster at least once a night if not two. My kids know how real these things are cause they were with me through each and every one before I was diagonised. They know that unfortunately they can't do anything about them except let them run their course. I found this site the other day when I got online to see if I couldn't find a site or something that might have an idea on how to stop this awful pain immediately. But reading some of your entries it doesn't seem like there is anything a person can do to stop them at their onset. I used to use Imitrex for my migraines but I got terrible side effects from it and had to be sitting on my bed while I took the shot cause after that shot all I could do was lay down and pass out. When I'd wake up 4 to 6 hours later my migraine would be gone but I felt like shit from the drug itself. I've also tried Zomig and it doesn't work on my clusters or my migraines. So if there's anything out there that might help PLEASE let me know. I never realized there were so many people who were afflicted with these things. My heart goes out to you all cause I've been there and currently am. Marge
Marge <lnsmca@yahoo.com>
Ephrata, PA USA
Wednesday, February 07, 2007 at 19:48:41 (EST)

NARCOTICS dont work!!! I took vicodin for CH and all it did was bring on more CH, I'm just letting you know that NARCOTICS cause's more ch.
Kevin
san angelo, tx USA
Wednesday, February 07, 2007 at 15:53:42 (EST)

Please dont look at the spelling and grammer below.. This long box is hard to type in.. (lol) thanks Kevin Kevin My name is Kevin, I've been suffer with Clusters for 22 years and going through a cycle now i have any where from 6 to 8 a day. Im 43 y/o feel about 85, havent had full night sleep in 3 months. This is one of the longest cycles i think i have ever had. When i found this web site i got lump in my thraot tears ran down my face, to think theres so many people going through this pain, the word (pain) is a understatement. I dont know if i should be happy i found this site or sad i happy in the since i found other folks that understand what i'm going through. Ive been on every medication you can think of. Im now taking an old bottle of Sansert i found since the stop making it and oxygen this cycle i'm having now the Sanserts are not working, maybe cuz there to old the oxygen is my like saver with out it i would have committed suicide by now. The oxygen really works the Sansert did work very well before. This would stop CHs from coming on and even shorten the cycles. CH wake me up 3 to 4 times a night but the oxygen kicks them in the ass most of the time every once in a while one will try to kill me, i wake up with shooting stabing blinding pain thats in the right eye, my eye tears up and turns beet red and swollen, my nose runs i and i start to hyperventilate the pain gos to the top of my throbbing head down the back of my neck. I scream and yell cry bang my head with my fist as herd as i can i pace back and forth. When CH gets so bad i rush to the hospital where they give me a shot and oxygen till its gone, my blood pressure gos sky high and my pulse jumps from 80 to 150, and the doctors stand there in amazement how bad the pain was and how fast its gone away, and for the next 8 hours my whole head is very sore and tender from the CH. I lay back down to sleep just to wait for the next attack to hit me. These beast are very hard on my whole family, they sit and just watch because there is nothing they can do to help me my mother brings me ice cold wash rags for my neck it dose help a little they try to comfort me. I get very short with them i dont mean to I just dont like to be touched at all during a CH it seems to make my pain more intense. My neuroligists Dr Craig Dubois, Austin, Tx sent me to have a CAT-SCAN and MRI but found nothing, he is a great doctor is a very nice guy he has been there through it all and has really tried to help in every way possable with combination of medications now i'm doing oxgen and Imitrex injection with Prednisone it working for me at this point in my life i'm willing to try anything, these CH have tried to ruined my life but i will not let it happen. Thank god for my family and loved ones. I was really upset to find there is so many of you having these NUCLEAR WAR going on in my head, maybe one day soon there will be a miracle cure for us all. Just wanted to say thanks to this site because i've learned about few new drugs i havent tried like the Imitrex thanks again everyone. My prayers are with you all and your families.. Kevin McCartney
Kevin McCartney
San Angelo, Tx USA
Wednesday, February 07, 2007 at 15:45:50 (EST)

I am a cluster suffer. I have suffered since I was 8 years old. My current bout is 26 months long. Recently in the last months I have been on prevention medicine. 800mg slow release blood pressure tablets per day 1200mg Epilim tablets per day (epilepsy tablets) Oxygen when required. It is interesting that my left eye, still closes up as it allways did before when I was about to suffer, but now suffer a plain head ache instead. I can live with a plain head ache. Life is now tolerable.
Paul <info@aimsptyltd.com>
Sydney, NSW Australia
Wednesday, February 07, 2007 at 05:49:26 (EST)

NARCOTICS: despite what is written on the Members' Board, I just checked the Medication Survey and it showed that narcotics appear to be the most effective treatment for CH attacks. This is obviously in contradiction with what the "regular" board members write-that narcotics do not work. I do not know how many of the responders to the Narcotics Medication Survey are regular contributors to the CH message board, but the figures on the Medication Board indicate that narcotics are the most effective medications in treating CH pain. I'd like to know what others think about this-after reading the Medication Survey. Ciao! Heidi
Heidi
USA
Sunday, February 04, 2007 at 14:45:10 (EST)

Hello....I hope my story helps, and no I would not understand what any of you are going through as I am not a CH sufferer. But I do share your pain and sympathize with all of you who suffer. My husband has been suffering with CH for 11 years. He has been on every medication known. We've gone to the hospital on several occasions so that he can get a shot of dH aragotimie and demerol to ease the pain, cause it just got so bad. He's been on imitrex, verapamil, prednasone, flonase, nasonex, butphutornal....just to name a few. He's had it all. Two years ago he tried a glycerine shot in the trigeminal nerve to freeze the nerve causing the CH. It did not work. He suffered with weeks of CH thereafter. Although it went away for several months, it came back loud and clear and back to it's normal schedule. Then his neurologist suggested, seperation of the intranervous medius (seperating the nerve that causes the CH). We decided that we would try it. He went for surgery last year. I can't say that it was not 100% effective, but his attacks are bearable. He does not get the severe attacks as often, but he still gets them. My husband, like clockwork would get a CH everyday at the same time for months and it would last hours on end. Since the surgery, he can fight the CH attacks more easily and it doesn't happen on a regular like it use to. When he did the surgey last year of the seperation of the nerve, the doctors did not replace the skull piece that they had removed to do the surgery. Two weeks ago my husband went back to have the skull piece replaced. It was replaced with a titanium plate. The doctors had to drain some the fluid built up in the head where the titanim plate was replaced. I think no matter what we try, my husband will alway suffer with the CH, but since his surgery of nerve seperation in the brain, he suffers less and not as often. God Bless and I hope you find what helps you!!!!
Lyn Gonsalves <lyn_gon77@hotmail.com>
Toronto, On Canada
Tuesday, January 30, 2007 at 23:03:30 (EST)

i have been suffering with c/h for about 12 years now. I have done 2 invasive procedures 1 beeing the trigeminal nerve injection and also the separation of the nervous intermedious both beeing unsucessfull. Glad to know im not alone and we will keep in touch. p.s have one now going on to 2 hours........
mike g <yln_gon77@hotmail.com>
toronto, canada
Monday, January 29, 2007 at 15:12:28 (EST)

It's been a month now I have another month to go with these Cluster headachs, I's also been 25 yrs since it first started I was about 17 when I had my first attack. It usualy comes once a year for 8 to 12 weeks and it is the worst pain ever. Thanks
Chandra Singh <rawteesingh@yahoo.com>
Las Vegas, NV USA
Thursday, January 25, 2007 at 23:49:03 (EST)

I just really looked at this website for the first time yesterday even though it came up in searches in the past. I've never posted or really read any message boards before yesterday and what I read made me cry. I knew there were others, but it's really nice to find folks that really understand I'm not just having a headache! I did want to share some research I found yesterday. There was a recent study on using 5mg to 10mg Zomig nasal spray to abort clusters and around 70% said it stopped the Beast. I have had Chronic clusters for 3 years and eposodic clusters for 10 years prior to that. Imitrex never seemed to work for me and Zomig is the same type of drug, but my doc called in a script and I used it last night with pretty good results. It was the best my head felt for years! The shadow was still there, but I was thrilled the Beast was gone - at least for a while. Hope this helps someone else like it did me! God Bless all of you that suffer from this horrid condition! Don't give up - keep on trying everything you can until you find something that works for you. Keep trying new doctors (I've been through at least a dozen over the years) until you find one that takes you seriously and will work with you on trying EVERYTHING until you find what works for you! Research treatments yourself - you can't count on the doctors! GOOD LUCK AND HANG IN THERE!
Tiffany <Tiffany@Inline.com>
Hayden, AL USA
Wednesday, January 24, 2007 at 10:59:33 (EST)

Does anyone know of any scientific studies being done on Red Bull and some of the other home remedies that have been mentioned on the board which claim great success? What I have seen posted are many claims to success, but these are anecdotal. It would be great if Red Bull or the various other home remedies actually did work to stop real CH pain (and it would have us a great deal of money over what we have to pay for the medical treatments!). To those who claim to have success with such treatments, do you also take prescribed medications in combination with the home remedies? Is it a possibility that some of those who claim success do not have CH at all or perhaps have had an episode or two and that the epidsodes ended on their own and would have done so without the home remedies? I begin to suspect that some people, particularly those who say that they drink large amounts of alcohol "in between" attacks without getting a CH attack, may have something other than CH (i.e., either a different neurological condition or are hypochondriacs-I know that that word has negative connotations, but it is an illness in itself, just a different kind than an organic illness with the real symptoms and real pain). Perhaps I am a doubting Tomasina, but in some of the posts that I have read concerning home remedies, the person went from years of pain and suffering to virtualy none almost overnight after trying some of these remedies for a short time. I do not believe that there is a medical conspiracy, inovolving physicians and drug companies world wide, to keep inexpensive treatments that work off the market in order to maintain profits, particularly with a disease like CH, which has relatively few sufferers, particularly chronic CH sufferers. I know that my medical insurance company would love a cheap cure instead of having to shell out thousands of dollars a month for medications and doctors and hospitalizations for me. I have been rambling on quite a bit, so I'll end and hope that someone can answer some of my questions or point me in the direction of reputable scientific literature that deals with any testing of home remedies or that can demonstrate that these home remedies really do work with people who are afficted with this terrible disease. A headache woke me up and I don't think that I'll be able to fall back to sleep, so maybe I'll do some of the housework that I've been promising myself to do for too long. Bye!
Heidi
USA
Wednesday, January 24, 2007 at 07:25:30 (EST)

built up dose of melatonin to 9 mg/day and miracle no headache for 2 weeks. thought wow this stuff really works. and then it came back and i had 1 CH. TG had a dose of imitrex with me and caught the bastard early. clean for another 6 days and am now having my 4th CH in the past 24 hours. what a site i must look, 1.10am holding a vibrator to my head as i wait for the imitrex to work. wew it's gone!! what next is in store???
Stan <dwnundr2@hotmail.com>
NJ USA
Wednesday, January 24, 2007 at 01:25:30 (EST)

I just can't understand how no dr. can say what specificly causes a c/h. The way I hurt,my eyeball should be hangin out or something. I mean it really should be that obvious,ya know.I started hurting 3 yrs ago and was quickly diagnosed but I am so didappointed that nothing can really be done about it.The only thing i'm proud of is the fact that I am episodic and not chronic.I really feel sorry for those of you that are chronic. I truly dont believe I could handle it everyday 4 a yr or so.Twice a yr @2 mths @ a time is just about to drive me insane itself. If anyone wants to talk about it with me please e-mail me anytime. It really helps me to talk to someone else who knows.I hope you all will stop suffering soon and GOD BLESS......
ozzy <ozzymbs@aol.com>
USA
Tuesday, January 23, 2007 at 10:05:31 (EST)

I do not see the connection between functiona hypoxia and CH I have been doing my homework and have yet to see an article that shows a connection between the two. There are so many intelligent people on this site and yet they allow themselves to get drawn into LONG discussions about theories about CH that have no basis in fact. I believe, along with the vast majority of the medical profession, that the cause of CH is a dodgy hypothalimus, that the cause isn't known nor are we even close to coming up with a cure-sypmptom management is about the best that can be done. I tend to go along with the medical profession with regards to treating my CH. My physicians are good, caring, concerned and I trust them 100% If one wants to use herbal medications or howl at the moon to get some releif, that is fine with me (so long as the howling is done away from my house, which is not hard to do as my nearest neighbor is 8km down a forest road from me-yes, I do have a car for travel and only use the broomstick if the car goes kaput!). My best wishes to all of you for good health and happiness.
Heidi
USA
Sunday, January 21, 2007 at 22:40:12 (EST)

I am 45 year old a cluster head from way back. I get hit yearly. They stay for about 2-3 months. With as many as 10-12 per day when in full swing. They last 15-20 minutes apiece. Then they just stop. Well, you all know what I am talking about. Thank God I have been in a remission period since the middle of Sept.2006. But, I know that it is only a matter of time until they make a very unwelcome return. Each and every day I take my Verapamil and say a prayer. I also keep a big supply of Imitrex on hand. Not that it helps much or at all. We all know how painful clusters are. So I wanted to share something with you... When I am in a remission period I realize how beautiful life is. And, when I am not in remission the thought of how terrific life is is what gets me through the episodes. It does not help with the pain. But, it gives me something to focuse on. That is one of the things that frightens me. During a series of clusters I begin to confuse easily. My mind becomes scattered. So, as I said before I just wanted to share this with you my fellow suffers. I hope this might help some of you. Lets stick together with communication and prayer. May God bless you and all the loved ones who have to go through these clusters with us. Sometimes I wonder who is in a tougher position, us as suffers or the ones who have to watch us suffer. Keep in touch. Bobby.
Bob Goodman <begood28@msn.com>
Brooklyn, ny USA
Saturday, January 20, 2007 at 21:25:44 (EST)

Hi everyone! I found this side in 2003, after years of misdiagnosis and mistreatment... I guess my CH started after I had surgery in August in 1999: I woke up and had the typpical symptoms: throat pain, nasal congastion, ear pain, blurry vision, piercing headache all on the left side... saw a nose, ear and throat doc. (that was in Germany), he advised that the tube for the surgery injured my throat... Well my symptoms did not get better... I came over to the States in 11/99, my headache were getting worse...I went through a divorce...my PCP mumbeled CH, he did not explain to me what it is...all I understood was HEADACHE, since I used to have migranes I told him that I doubt that it is JUST A HEADACHE since the pain is so excruciating. He told me he knew what it is, send me to physical therapy, cad scans were done, all kinds of meds were prescribed. Nothing helped, my co-payments were sky high. My attacs were so bad that I did pass out after words. One time the neighbors called the police, cuz the thought that I was being attacted since I was screaming so loud...I was scared, intimidated and worried it was just all in my mind, cuz I was going through a divorce and a stranger in this country...I started doing resarch and I found this website... I was happy as well as devastated, happy, cuz there were others, devastated cuz it is a condition that can't be cured. I proudly advised my PCP that there are alternative treatmeants like oxygene... He was offended!!!!!! He advised me that he would know best and I could not afford it, even though I had insurance!!! I insisted to be refered to a Neurologist... Got a good one, who had to wean me off the LEATHAL cocktail that PCP prescribed (combination of meds)... He put me on Oxygene (I can afford!), Verapamil and Topamax and I can deal with the DEAMON!!! I finally had a break after 7 years in June of 2006 until October 2006! They are back now, but I can deal with them...However, stress does set them off...
Astrid <onemoremoore@verizon.net>
Virginia Beach, VA USA
Saturday, January 20, 2007 at 07:06:00 (EST)

I am in my 21st day of this cycle; CH sufferer since 2000. Approx. 3 year rotation to date. Seasons get me. Depakote 1000 MG per day and nasal sumatriptan for suppression and aborting. Still getting hit several per day up to kip 7. Naps lead to more torture. I find that hot coffee shortens the otherwise excruciating endless minutes a little, and a hot towel on the face (microwave that sucker), a hot shower and ice pack and so on. I try to stay positive, and am encouraged by all the courage shown by sufferers on these boards. I am fortunate to have a supportive and believing spouse. It's hard to tell her to not mind me so much when she cares a lot. Believe me, if I should ever find that "magic elixir", I'll be sure to post. We are not alone. Maintain.....
Ed B
VA USA
Friday, January 19, 2007 at 23:28:04 (EST)

Mine started 5 yrs. ago after sinus surgery. In my second series of attacks now. Ive got questions, lots of them.
Jim Clark <geniusevil@hotmail.com>
Woolwine, VA USA
Friday, January 19, 2007 at 08:35:34 (EST)

Nine months ago, while my husband was knocked out on pain medications, I began searching for answers and found this site. It was clear ... my husband suffers from cluster headaches. I lost my husband, in many ways, to cluster headaches, in 2001. In 2006, with a correct diagnosis and monthly shots of seretonin, combined with occasional Imitrex shots, I have my husband again and the difference is incredible. Don't give up. Our family is complete again. Thank you so much for this site. Keep up the good work!
Jennie wife of Troy <troynjen@comcast.net>
Hattiesburg, MS USA
Wednesday, January 17, 2007 at 20:34:39 (EST)

Hello My fellow cluster heads. I haven't suffered for 7 years now. The ch totaly went away, until Dec 22 2006 . I had them for 22 years and they went away when I hit 40 , like someone fliped a switch. I was SOOOOO happy!! I had a hernia repaired on Friday the 22nd of december and when they woke me up from anisticia (sp)I had a cluster, I was so depressed about it, I know you all understand. Now everyday since then I have had at least 2 full blown attacks a day and the shadow has been beside me the whole time. I asked the surgion when I went for my follow up if he had ever heard of anything like that and of course he had not. The attacks are waking me up about an hour or so after I fall asleep and since it is cold here in Indy right now if I go outside in the cold the attack is usually knocked out in ten or fifteen minutes. I am so depressed about them coming back. I only wonder how long this cycle will last. To the rest of my head banging comrads, I feel your pain and hang in there.
Kevin J. Smith <redjoseph123@yahoo.com>
Indpls, IN USA
Monday, January 15, 2007 at 01:29:30 (EST)

PPL, i have them for 16 yrs every year 1-3 months. Finaly I am diagnosed, bought O2, and now I am suffering approx 2 times a day for 10 minutes each! I can live vith that beast. No more sqeezing my had, and banging with it on the floor. I hope it will work forever!!! Try it. It is cheap, and no sideaffects!
Davor Leko <dleko@hotmail.com>
Zagreb, CROATIA
Friday, January 12, 2007 at 13:07:34 (EST)

just woke the whole house up - wife doesn't understand. 3 yr with severe ch. 3 yrs ago didn't sleep almost 30 day, i was a wreck. no dr's could get it right. last year was told i had a TIA and i have cronic migrainal seizures? what a crock. this year seems to be a few months off - normally happens oct-nov. dr today says because of weather. gave me tomig 2 days ago - does nothing. today gave me butalbital - only good if take 2 pills but takes to long ( i hate pills ). how do i stop this, i can't go another month like this. tonight was the first time i hit my head to numb the pain. just to much to handle. help..... anyone please
fred defeo <fred_defeo@hotmail.com>
plymouth, ma USA
Friday, January 12, 2007 at 02:27:28 (EST)

Hello...my first entry. So glad to find this web site. I have not been "diagnosed" yet, but that's only because I'm a stubborn mule who has refused to believe that I suffer from CH. Sadly, I seem to be a "chronic" CH. First onset about 8 months ago. I am 52-yr old white female with NO history of headache until sudden onset last spring. Mine are almost always in the right eye (at and "on" my eyebrow...and just under it). Pain is so specific that the location is about the size of a dime and like someone is piercing my head with a hot knife. Like so many of you, I apply extreme pressure (usually with my thumb or any hard object). Have only had "relief" for 3 weeks out of the past 8 months. So debilitating that I can barely function in life anymore. Went from being a 'social creature' to almost total isolation. The CH rule my life. Often feel nauseated, but never actually throw up. Am now experiencing a very scary "new" symptom that happened during a CH a couple of nights ago...visual change in right eye. From what I've researched, I apparently have a torn retina (from the CH). Going to see a neurologist (no meds taken so far other than over-the-counter). My father had a pituitary tumor, which really scares me. The CH are getting worse, not better. My refusal to 'admit' that I have this condition has been so stupid. I keep hoping that it is a nightmare that I will wake up from...instead, my life has slowly dissolved into nothing. I am a grouch and live in the dark these days (literally...the dark). No one understands! I now totally avoid any night time experiences that are loud, and mostly spend my time alone at night for fear that triggers will bring on worse pain. My personality is in the toilet...no one can stand me anymore and I can't stand myself. Seeing the doctor tomorrow...this vision issue is really scary. I love the term "the Beast". Help me tame this nasty "Beast". Would love to hear from all of you. It feels great to know that I'm not alone...why are my chronic? How many of you are chronic sufferers? Thank you! Alissa
Alissa Searcy <alissa_searcy@yahoo.com>
Jacksonville, FL USA
Tuesday, January 09, 2007 at 02:42:02 (EST)

I don't really know what I have just I have been diagnosed with a gland calcifying and dying in my brain and fybromyalgia and lots of other pain disorder's and migraine problems I often pass out from them or get very very sick the only thing that works for my full blown attacks is sometimes a visit to the emergency room and enough drugs they say to kill a normal human then I feel some relief and often still walk out of the ER without Even a Stager that is very scary I have sensitivity to the hum of lights yes the hum that most people cannot hear drives me insane and PC screens and other light sources give me horrible headaches after a while and driving at night the lights drill into my head and make me want to kill someone I cant drive to much at night I get road rage very bad because of how bad it hurts but I have a high tolerance and just deal with it allot of the time and other times get lucky and just pass out or once in a great while I have a good day my topamax has made them a little less but I still have one every day to some degree So to some extent I know a little of what some of you are going through and wish you guys the best of luck Dan
Dan Opp <oppconsulting@hotmail.com>
Freeport, IL USA
Tuesday, January 09, 2007 at 00:42:11 (EST)

I had these headaches 3 years ago, to which my doctor sent me to see an eye specialist and no one had any answers. I'm now having my second bout of them and thought I would do some of my own research. It was fantastic finding a site which described what I've been experiencing so accurately!
J <junk@darktrance.net>
Brisbane, qld Australia
Monday, January 08, 2007 at 21:16:57 (EST)

For 7 years i was asymptomatic. Now i have them back again behind my left eye. I hate these cluster migraines. I hoped that i grew out of them. Im 46 years old and im on the floor in the shower at 430 am because it helps relax me. IM living on demeral and i hate it. please help me !
john w
livingtson , nj USA
Monday, January 08, 2007 at 11:10:19 (EST)

I just found this sight, while up crying from the pain. I started crying even harder when I think I finally found out the reason for my headaches for the past two years. I just had my third one this am (i beleave you call them cluster headaches), I so emotional right now I cnt describe it. I cant afford a doctor so I've been living through this night knowing what was going on. Besides the fact the pain is so bad I want to kill myself at times. I need to get a new browser, I dont see a verification code. Thanks again for this sight. I guess I'm not crazy after all.
Gary Mills <g_wgmills@yahoo.com>
Myrtle Beach, SC USA
Monday, January 08, 2007 at 06:21:24 (EST)

Hi There, In 1993 I experienced my first cluster. For several years cluster cycles ocurred in spring and fall-winter. Cycles would be 4-6 weeks in length with a cluster every second or third day lasting anywhere from 2-6 hours (starting lightly and instensifying with time for both the cycle and the headache itself - sound familiar??). After several years (I cant remember when) they stopped occurring in Spring and so the dreaded fall-winter timeframe was upon me, and they seemed to get worse in recent years. Its now January 8th, and I have not experienced a cluster this year yet. Why? I cant answer that. Its the first time Ive been cluster free through fall-winter since they started 14 years ago. Only two things are different in my life this. # 1, I started doing Hot Yoga (Bikrams or Moksha). Been doing it on average once a week since last March. It makes me sweat profusely, so much so that at the end of a session, i have a medicinal taste in my mouth as if my body is expelling damaging toxins. But who knows? The other thing Ive been doing is listening to binaural audio cds. Particularly, the one I listen to at bedtime (3-4 times a week) is called "journey" by Immramma. Its the introductory audio segment which youre apparently supposed to listen to regularly to prepare your brain for the more advanced-intense binaual audios. You can research binaural CDs on the internet or on the websites of the two companies Im aware of that produce them: 1-Immramma Institue and 2-holysynch by Centerpointe Research Institute. I have no idea whether either of these two differences in my life this year have been responsible for preventing my clusters, but I thought I would share my story in case (a) one or both ARE the reasons I havent experienced them and (b) someone else out there wants to give this prevention method a try. Dean, 39 (Vancouver, Canada).
Dean <dean_prelazzi@hotmail.com>
Vancouver, BC Canada
Sunday, January 07, 2007 at 15:58:27 (EST)

I have been a cluster headache sufferer for 10+ years! Now I have someone who REALLY knows what they are like.
Chelsea <chelsea_becher@excite.com>
Oregon City, OR USA
Sunday, January 07, 2007 at 11:36:35 (EST)

Hey. I am 23 years-old and have had CH since I was 10. I am so tired.....so tired. Tired of finding a "cure", tired of the explanations at work, tired of trying to care for my 2 young boys(2-year-old and 7-month-old) while going through an episode, tired of lashing out at my husband when he can't understand what is going on. So tired. I was reading in the book of Job and Satan tells God something like "attack his body and surely he will curse you". I cried so hard because I have been so angry with God about my condition, but NO MORE!!! The devil can just burn in hell, he will not get the best of me anymore I'm done!
Sarah <sroot3773@hotmail.com>
Pine City, MN USA
Saturday, January 06, 2007 at 02:41:16 (EST)

Hi my head banging crew of unfortunates. Sorry to be so light hearted about this, but it's all I have these days. One marriage down and dating now. Poor Amy just could not deal with them This new girl has NO idea what she's in for right! I ve tried to tell her .Pacing, head banging, right side, et cetera. I have not been back to this site for a few years, but your all here! Misery loves/needs company. Again, don t e mail me because I'm being mean, I m just dealing with this BS in my own way. What about the person that offers you a ASPRIN! I want to throw the bottle at them..I'm 37 and had my first heart attack on Imitrex..I had my seconf four months ago. For the first, I took the third injection. At the time, it sounded good since I would have rather died than go through a third 11 (my pain scale 1-10). I have it better than a few of you .I get them once a year for two months and then they go away. I've skipped a year twice in 20..I SO feel for you people and wives/partners who have them more frequently than myself. What works for me...sometimes...ice on the back of the head. Sometimes it makes it worse though. Hot shower and rock with pressure to the back of the neck. Punch myself in the head..at least I get to distract the pain for a sec:) Anyway, like all of you know, the first time you read those words on the website, you cant believe it in some weird way it helps to know that other understand. My heart TRULY goes out to you guys and girls..you know what I m talking about No Asprin thanks though . Now go cover that eye..it s bright in here..Brian
Brian Botts <brian@platformdevelopment.com>
Park City, UT USA
Thursday, January 04, 2007 at 22:36:08 (EST)

Hi, I have suffered for about 20 years. I remember distinctly my first episode. I just sat on the toilet and thought I was having a stroke. My poor bedroom wall has it share of holes that I made in the troughs of the Demon. It is now covered with pictures so the holes don t show. Back then Cluster headaches were not well known by doctors, or at least the ones I saw. I was given many different medications, mostly the sublingual type, with absolutely no positive results. Finally I was given the Imitrex Injections. They are my savior! When I feel a headache coming on I take the injection and within 10 minutes the pain is gone. It was a miracle! Just thought I would share this for people who are still suffering. Thanks Steve
Stephen R Marino <stephenmarino@gmail.com>
San Diego, ca USA
Thursday, January 04, 2007 at 17:03:06 (EST)

It was great finding this site,I was lucky in the respect my Dr.after 5 minutes of looking at me knew exactly what I had.However to this point 5 weeks now---nothing has really worked--I get a few good days--always have shadows though-and get atleast 2 really bad blasts every day.Today the Dr. gave me a precription for Lithium,this condition c/h is really ruining my life,I find I cant work,sleep on a regular basis,and I am afraid to go anywhere alone-for fear of an attack.How do you other folks cope with this?My Dr.seems to think i may be chronic,just hope I hit the down side soon---at least for awhile.I have read some of the postings here--all I can say is GOD BLESS YOU FOR BEING SO POSITIVE!
Kevin <ryansmithxxx@aol.com>
zelienople, Pa. USA
Wednesday, January 03, 2007 at 19:31:02 (EST)

Hello and Happy New Year to all of my fellow clusterheads. It's been a long time since I've been on this site and many PFD in between. Unfortunately the BEAST has returned! What a way to start off the year. Is anyone else in the northeast been feeling the same if so i'd like to hear about it.
Don <Gate2wire@aol.com>
Brooklyn, NY USA
Wednesday, January 03, 2007 at 10:33:32 (EST)

excelent site for us
Fernando Reyes <reyesor@hotmail.com>
Mérida, Yucatán México
Tuesday, January 02, 2007 at 18:39:02 (EST)

My father had CH for years before he was diagnosed. And now I have them. They started when I was 19. We thought it might have been an isolated occurance, but they came back this year. I'm in the tail end of a cluster now. I think frequent exercise and water have helped me, but my cluster might have been ending anyway. I use an Imitrex 20mg nasal spray as soon as my right eye feels tired and the slight pain begins. I have fantasies about CH sufferers banding together to purchase Glaxo, steal the forumla, and publish it on the internet so that if we have to suffer through this, at least the stupid drug would be cheaper. Anyway, my heart and my prayers go out to all of you and your families.
David <davidnibert@gmail.com>
Carrollton, TX USA
Tuesday, January 02, 2007 at 05:08:13 (EST)

Try holding a vibrator over the area of pain and moving it around. Difficult to do if most of the pain is in the eye but certainly helps me when the pain is concentrated over the temple or cheek. I vault out of bed at the first twinge that awakens me, give myself an Imitrex shot - 3mg works for me- and apply the vibrator that decreases the severity of pain until the Imitrex kicks in. Doesn't get rid of the pain completely but helps to make it more tolerable. Difficult to do if I have a daytime pain and am at work. Same result if I take a hot shower and let the water play on the site of pain, moving my head slightly to vary the place the water touches. Probably works along the same principle as the gate theory of pain contro;. ie flood the sensory nerves with fast conducting touch to try crowd out the slow but distressing pain sensation. Only difference here is that you cannot apply the touch stimulus betweent the site of pain and the brain. Try it , it may help.
Stan <downunder2@hotmail.com>
NJ USA
Monday, January 01, 2007 at 21:39:12 (EST)

I am eighteen years old and i have been suffering from cluster headaches since i was six years old. When i first went to the doctor he gave me a CT scan and an MRI and then told me it was migraine headaches. I was getting my headaches at twelve thirty every day, right after eating and drinking my chocolate milk, so i had to change my entire diet. after a few years and several doctors and tests i was diagnosed with cluster headaches. To this day i go through the hardest time trying to get people to understand that this is a real thing, a disease, that i really have to schedule my life around. I am so thankful for online communities and things like this where people understand the pain i go through on a daily basis.
Haleigh <hayjay3@yahoo.com>
USA
Monday, January 01, 2007 at 21:16:01 (EST)

Thank you for this page and this community. Every time my headaches stop I think they're gone for good, but no, they're back again. After suffering attacks for about 12 years the most helpful treatment I have found has been ACUPUNCTURE. I also appreciate hearing about the water treatment and arming myself with the information about drugs I will need when I sit down to talk to my doctor next week. Thank you!
Anna <lasopko@hotmail.com>
San Francisco, CA USA
Monday, January 01, 2007 at 15:46:24 (EST)

Hello and welcome. You have found the best place to be if you suffer from (or support a sufferer) of CH. On the left is a link to the message boards. There are people there who can offer much support and information. Join us! pain free wishes, nani
Anita
Los Lunas, NM USA
Monday, January 01, 2007 at 12:22:54 (EST)

So thankfull for this site. CH since 1996.Tried many things and would be more than happy to share with anyone what has worked and what has not for me.
Mike Embry <mandc123@duo-county.com>
Russell Springs, Ky USA
Monday, January 01, 2007 at 11:48:05 (EST)

 

 

 


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