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 April-June 2004. Thank you for your continued active involvement in this site and keep those guestbook entries coming!

 

 

Click Here to go back to the Main Guestbook

hi i'm cathy i'm been ch for about 3-4 yrs and i would get then for about 5 day in a roll and i thur a lot of test to see went i had i went to see a neurologist and he give me zoloft and help went i was on it i saw up 150mg i'm gave i find the site i find in reading paper in pa cathy
cathy <acat9761@aol.com>
birdsboro, pa USA
Wednesday, June 30, 2004 at 23:38:04 (EDT)

Hi...back again....I guess I don't suffer as much as most of you..though I think some of you make things worse by using painkillers..vicodin, tylenol,excedrin etc..can make your headaches rebound headaches...give the preventives a try 1st and give them 2 to 3 weeks to kick in,,stay away from painkillers....52 now have had clusters since age 25,,as I grow older they either are getting better or my pain threshold gets better...used all the drugs at one time or another..verapimil, sansert, prednisone, inderol,lithium and oxygen,,,used to think they worked especially verapimil with the sansert.....but last 2 cluster periods, i've used verapimil 240 x2 and depokate 500 x2...headaches disappear within 2 to 3 weeks..this I can live with...I have imitrex inj and pill but still scared to use...maybe the next time so am not suffering for 2 to 3 weeks.
mike <mikezav1@hotmail.com>
USA
Wednesday, June 30, 2004 at 23:28:17 (EDT)

Just wonder if many other people were told they get classic migraine and chronic cluster headaches. I was told that by a neurolgist I was going to who passed away. My records were forwarded to my primary care physician who closed his practice. No records were ever forwarded to my new doctor. I was going to the er at the hospital quite a bit and was told by a man who claimed to be a doctor that what I needed was to go home and get a life. I have been getting these headaches various times during the day, most every day for several years now.
dkee <dkee@baronsteel.com>
USA
Wednesday, June 30, 2004 at 13:51:38 (EDT)

today was the day! diagnoise, cluster headaches. the words I knew the neurologist would tell me. I already have migraunes, my brother had cluster's, I say what my brother would go through when this seemed to be a never ending lifestyle for him. For me, migraines are a step away from death's door. Now, I am on oxygen,melatonin,imitrex,frova. This is my first visit to find this God offly news out. Please,help me a new member to try to live a life with clusters now. Thank you I'll be here for you,if you will support me also in time of need! Scared,getting dark out, holy hell nite again! a friend in need Deb S.
deb stutzman <dsttzm@aol.com>
elkhart, indiana USA
Monday, June 28, 2004 at 21:31:36 (EDT)

hi, I'm a 51 year old woman who has suffered with cluster headaches since i was 20. i have been to every kind of dr. & tried every kind of treatment except hypnosis & i have never had anyone shake a dead chicken over me.(if someone told me that would help, believe me i would have tried it!!!). my bouts come once a year, sometimes i can go 2 years. not the same time of year. they usually last about 30 days but there have been years when they have lasted 2-3 months. i have the best results with imitrex injections, but my insurance co. will only pay for 6 a month. what a joke! my last bout was spring of 2002 and i had no imitrex. i used vicodin until i found a neurologist who gave me "frova" for the headaches which i took before bedtime & Topomax to take as a preventative. i don't know if either of these things actually worked as i was probably at the end of the bout & have not had another (thank god). i pace & rock in a rocking chair & cry during these bouts. i have never contemplated suicide but actually had a dr. once who said they were surprised i hadn't. i have a friend i used to call when i had a headache during the day & she would read to me on the phone while i paced. but who can you call at 1 o'clock in the morning?
penny gregory <goozitza@hotmail.com>
rosburg, washington USA
Monday, June 28, 2004 at 19:55:19 (EDT)

Have had ch for the past 20 years (now 52) with 4/6 year break the current spell now 2 months old and the most intense - have found oxygen to work if caught early enough , trying topamax and a mouth plate to releive tension still 4 - 6 per day (early morning 1am onwards) very little sleep - been to the dr today as i am deperate and he is going to operate on the arteries on my head on wed to see if that will improve my ch - interested to hear from anybody out there if they have tried this procedure Tnanks for a great site - Pieter
Pieter van der Merwe <pieterv8@absamail.co.za>
Boksburg, South Africa
Monday, June 28, 2004 at 15:42:31 (EDT)

I am a new sufferer of episodic cluster headache. Thinking it was a strange return of allergic sinus headaches I used to have, I started taking quercetin as I did then. Whether coincidence or not, I've had only one excruciating wake-up since I started it. If clusters are histamine related, this makes perfect sense. I take 500 mg. quercetin (with C) at meals, and matching 500 mg. bromelain NOT at meals. Has anyone else tried this - and is this coincidence or real help?
Nancy Dodge <nfrench@together.net>
Stewartstown, NH USA
Monday, June 28, 2004 at 08:05:28 (EDT)

I'm a seventy-one year old guy who suffered the usual agony of Cluster Headaches from about fifteen years of age until I was in my early fifties when they suddenly disappeared.Toward the end they became so severe that I wasn't sure I could survive.I don't know if this is a common occurance.As a matter of fact I've never talked with anyone who suffered from these headaches.On occasion I think I feel one starting,and even after all these years I break into a sweat.I guess I'd like to hear someone say they are gone for good. Bernie
bernardo <marbern33@hotmail.com>
ures, mexico
Saturday, June 26, 2004 at 22:57:58 (EDT)

Hello everyone. I am an episodic sufferer. First bout OCT 2002 LASTED A MONTH. This bout started June 2004 and I 16 days into it. Its hell. Doc has finally given me oxygen and sumatriptan injection and they both help!!! I have just sent off for that sinus buster and wandered if anyone has had any luck with it? Also will I get a cycle every 18 months now or could the next one come at any time? Please email me and let me know what sort of remission lenghts I can expect. Thanks for being here. Michelle x x x
Michelle Mehmet <michelleandcem@hotmail.com>
London, England
Friday, June 25, 2004 at 13:26:11 (EDT)

im the wife of a chronic cluster sufferer who doesn,t seem to ever get a break from these dam headaches. were wondering is there anyone out there who has qualified for permanent disabilty for these dam headaches. i don,t see how anyone with these headaches can hold down a job on a daily basis.please help us out if you know about qualifing for disibility. i dont know how much longer he can last trying to work and deal with these things without passing out at work from a headach. thanks the jones,s.
curtis & melba Jones <curtisjo63@netzero.com>
tulsa, OK USA
Thursday, June 24, 2004 at 20:47:53 (EDT)

Hey guys and gals I'm 36 and have been having these things since I was 29 they suck. I'm glad I have found this site a little sad that it took me this long. I just have not ever really talked to others that have these beasts I'll right more latter been having trouble sleeping :( Wish everybody a pain free day-n-night. --L--
L <jenks013@alltel.net>
Clarkesville, ga USA
Thursday, June 24, 2004 at 11:39:47 (EDT)

Have had these since was 11years old.Its stabbing & excruciating.Have these every 6 months. Sometimes triptans work otherwise don't. Please feel free to email & share your experience. I would appreciate it much.
Kamran <kam1khan@hotmail.com>
Mississauga, ON Canada
Wednesday, June 23, 2004 at 21:54:28 (EDT)

I have suffered cluster headaches for 3 years. I tried numerous preventative medications and aborative medications. After 3 years of HELL... I had surgery to deaden the trigeminal root nerve fibers one month ago and now I am headache free. It is a miracle! I have my life back.
Kevin Pixler <Jharris377@satx.rr.com>
Montgomery, Tx USA
Wednesday, June 23, 2004 at 16:29:14 (EDT)

This site should take out the headache of looking for property for sale in marbella
paul <paul@hotmail.com>
USA
Wednesday, June 23, 2004 at 12:23:30 (EDT)

Hi, everyone. I'm very glad to have found this website, it's a great help to read about this pain and maybe learn some helpfull means.
Ronny <fa455588@skynet.be>
Brugge, Belgium
Monday, June 21, 2004 at 17:32:08 (EDT)

Is suing and filling grievances against Dr.s and Insurance companies, who fail to recognize, refer, and treat the signs and symptoms of Cluster Headaches, as a legitimate and devastating disease the right thing to do? My point....if I give two letters-referring to medical conditions CP and MS. How many people could tell me what those letters stand for. Now-CH. Clearly there needs to be alot more publicity and education for every person who's Name starts with Dr. and person who suffers and doesn't even know or think about CH. A disease I believe is one of the most devastating diseases know to man. Some things can be worse than death. CH The two books-"The Bibles of medicine" for every (get them sufferer) premed. student and Dr. are Taber's Medical Dictionary and the Physicians Desk Reference. I dare anybody to find Cluster Headaches, signs and symptoms and possible treatments in one of these two books. I believe this disease must start at the school level and be presented in every continuing education class for Dr.s, paramedics and Nurses nation wide. I believe the only answer is War. Accountability for Dr.s, Nurses, paramedics and insurance companies. I am debating-soon telling my six year nightmare story and suing over 20 Dr.s, file grievances with my state, suing a major university of medicine, four medical groups and one of the largest insurance providers in the nation. With the support of my current Dr.'s who are known nation and world wide. In short I was literally locked away with an undetermined time period. Diagnosed as schizophrenic. Was called a drug addict because I was begging for answers, relief, anything, asking my dr.s to send me somewhere, anywhere....but because of insurance limits, "we have done everything" etc.etc." And then refusal to treat me anymore by my insurance and medical group. Pain, suffering, shame, guilt and embarrasment no human should ever have to go through. Am I the only who feels this way. Would there be support from other sufferes(not financialy), but in numbers or am I still crazy:) Please write me. Should I go!!!!!! Thanks the unknown sufferer for now.
A question <cureforclusters@yahoo.com>
USA
Monday, June 21, 2004 at 03:00:44 (EDT)

Just dropped in to welcome everyone and to let you know that you can find lots of help, ideas, support and a little fun on the message board. All you need to do is say hi and you're off. Charlie
Charlie <charlies@netsync.net>
Jamestown, NY USA
Saturday, June 19, 2004 at 23:52:32 (EDT)

I believe I am having cluster headaches because I have found my symptoms,exactly, identified in numerous web documents. I have a long history of migraines, and once a few years ago, I had a two-week daily series of headaches which resolved and did not recur. Now, however, since starting an antidepressant called Lexapro, I have been having these disabling headaches 2-3 times per week which always resolve with Imitrex but my internist does not want me to take so much Imitrex. So I have discontinued the Lexapro (3 days ago) and am praying that this is medication related, though I cannot find anything in the Lexapro literature other than an incidence of 24% of reported headaches in the clinical population studied. I am wondering if anyone has heard of medication as a trigger or if I am hoping for something that will not bring resolution.
Maureen O'Connor
USA
Saturday, June 19, 2004 at 20:58:41 (EDT)

I am very grateful to have a place where I can share my thoughts and feelings and others can understand what i am going through. I have been a female CH sufferer since I was 21. I am now 39 and I still dread the onset every 1-2 years. I have tried EVERYTHING as many of you have. Three years ago I was taking Depakote, Verapmil, 2 Imitrex needles a day, oxygen,and getting accupunture needles in my head and neck. After the 12th week, I thought for sure I was going to die. The CH,the rebound headaches,the meds, and the lack of sleep were killing me for sure. Of course I did not die, and the cycle ended as suddenly as it came. This is my second cycle since then and I have changed the course of action. I am taking 2100 mg of Neurontin, one capsule of Cartia, double espressos before bed, oxygen at onset, and coffee several times a day. I do not feel great by all means. I feel disoriented and hyper most of the day. But I am sleeping and managing this horrible condition. I probably will have to cancel our family vacation to Disney scheduled for next week. This is the second vacation we have had to cancel over the years. It breaks my heart to disappoint my children and husband. They say they understand, but it hurts them too. I am praying for relief for each of you who are going through this. I have faith that someday there will be a cure.
jackie <jackiegallo@comcast.net>
scotch plains, nj USA
Saturday, June 19, 2004 at 08:53:53 (EDT)

Hello! My husband has suffered from cluster headaches for about five years now. I fell so powerless to help him. I don't know what to do. He's been to the doctor several times, and tried several kinds of meds, nothing helps. He always a happy guy, wakes up in the morning singing. This bout of cluster headache is the worst he's ever had. I scares me because I have never known anything to really bother him. These headaches come on fast, and powerful. He walks around holding his eye, or just rocks back and forth. Often he wakes in the night with these headaches. some of the headaches are not to bad, others bring him to his kneees. Some last about twenty minutes, others about an hour. The doctors are of little help, and are not ever sure what to call these headaches. But from everything I have read, they are clasic cluster headaches. As I myself am not a head sufferer I can only have compassion, but not empathy because I don't understand how bad they can get. I only know that it hurts me to see what this is doing to him. And I need to know what can I do to help him? He has had brain scans (Normal) blood tests (Normal). We have tried about everything, but nothing seems to work. Please if anyone can give us some advise we would be so greatful. This cycle has lasted about three months now, the past three weeks have been the worst, more headaches, more intense, lasting longer. My husband is 32, and in the Military. This cycle has changed him, he's not a happy guy anymore. He does not wake up singing. I don't ask him how was your day, I ask how was your head? I really am scared for him. I really need to know how to help him. I would welcome any suggestions. I know this has to be awful, just watching him pace, holding his head, and when he does not have a headache he's worried he'll get one. Im writing this because those of you who suffer these awful clusters know what he's going through. He's a tough guy, never sick, never complains, but these headaches are kicking his butt. Please help me, to help him. Thank you, and God Bless.
Mary <Soldierswife@msn.com>
California USA
Saturday, June 19, 2004 at 02:23:31 (EDT)

hello peeps! i happened to stumble upon this website while looking for organic/natural flea remedies for my dogs. i myself have suffered with headaches most of my life, the occassional migraine and DAILY sinus headaches which im sure are nothing close to what a CH sufferer endures. i dont want to sound rude, believe me, i feel for every one of you....but, i recently made the choice to go vegetarian and have noticed a decrease in headaches. i attend a weekly yoga class to relieve stress and i am seeing a chiropractor once a week to have my back realigned. i have found having the stress and tension in my muscles eliminated, aligning my spine and cutting out all hormone and antibiotic laced meat, yes that includes chicken, i feel so much better. a doctor will not suggest a holistic approach. i had VERY high blood pressure. two weeks without meat and my blood pressure was normal. my doctor never suggested giving up meat. he never even suggested yoga, he just wrote me a prescrip for pills. we've all heard about people who have problems with MSG in foods and other allergies which cause headaches. once they are eliminated the probs may go away. i just thought i might suggest a different way of thinking. hope im not offending anyone. take care!
cookie <grlscoutcookie@msn.com>
cincinnati, oh USA
Friday, June 18, 2004 at 22:14:44 (EDT)

Hi everyone! After 2 years of different doctors and worries what the hell this could be....finally this week I got the answer! 4 days has passed and I have really been depressed. It was easier before when all the other doctors told me that it was allergies or whatever they could come up with. It's kind of amazing afterwards when I am reading about CH, because the symptoms are so clear and all the previous doctors should have "picked" it up. 4 days has gone and 4 days with Topamax and it feels as if my head is getting fried! Does anyone else have the same experience with this medication? I am a strong person and I will do anything to fight this! I am step by step changing things in my life and maybe one day I will leave this behind me! If you want to write me an email and tell me more about yourself, do so! Take care! Mikael
Mikael Jonsson <micjonsson1@aol.com>
Hollywood, FL USA
Friday, June 18, 2004 at 20:05:40 (EDT)

I read the message board and Iīm impressed with the number of people with the same problem that I have. Iīm sufferer of CH for 30 years, but I only discovered that is was CH a feel weeks ago. Until then every doctor, I went told me that was a migrane. So the medicines donīt work for all this years. Iīd like to chance experiences with you, my new friends.
Joana Annicelli <cannicelli@uol.com.br>
Santos, SP Brazil
Thursday, June 17, 2004 at 21:30:07 (EDT)

I'm a 65 yo male suffered episodic Cluster for 20 years. It has now turned into chronic. The last week has been Hell. SUnday AM had the worst episode in history. Seriously considered suicide. Called the Doc instead. I'm now on a 3 day course of IV steroids that broke the pattern immediately. I'm seriosly considering having Gamma Knife Surgery for permanent relief. Can any one share experience with me. Steve
Steve Peshkin <peshs001@comcast.net>
Collingswood, NJ USA
Thursday, June 17, 2004 at 16:25:56 (EDT)

http://www.healthsquare.com/newrx/EFF1153.HTM im a member according to the neuro i went me and everybody else suffers from rebound headaches i think that is a cop out he gave me this med called effexor xr it has just made it worst so click on and see why so now im in search of another doc this stuff has given me all the side affects you could imaginete rrible dreams, sweating at night, earaches, flu like symptoms i can keep going.i took it for 5 weeks it has been bad i took my post off because nobody seem to answer me. 20 yrs to long and someone wrote me saying ugly stuff. well the ch are still here and so are the side affects from that effexor. God willing i will get threw this but this med is not an option. the cat poo is not either. i do have o2 that is it.but my next step is finding a pasture of cows.it has rained alot here.hope i can get to a good neuro i have read so much found so much info like i said rebound is a cop out.the neuro i went to seen me for about 8 mins and said i had rebound. i know thats not it.EDDIE
eddie <eetaylor@charter.net>
prattville, al USA
Thursday, June 17, 2004 at 00:47:31 (EDT)

I am no entering my seocnd series of cluster headache attacks. The first was three years ago and lasted for approximately 4 months. I thought it was everything from hypoglycemia(low blood sugar) to changing vision to pollen allergies(as it occured during mango season here). When the headaches started again about a month ago, I finally broke down and decided to see a different MD. She quickly and correctly confirmed my suspicions that I was suffering from cluster headaches. She prescribed a migraine medication named RELPAX and it absoloutely works like magic!!!What used to be an hour of sweating, nauseating, burning and excruciating pain now is confined to only fifteen minutes. If you are reading this, PLEASE ask your PCP about prescribing RELPAX for you. It truly has been a God-send for me and I hope it will be for you as well. Take care, hope you all have peaceful and painfree days. Aloha!!
Brian Nishida <B_Nishida@netzero.com>
Honolulu, HI USA
Wednesday, June 16, 2004 at 04:32:48 (EDT)

Wow! People who actually understand! Hello everybody! I'm sorry that you're suffering the same pain as me, but boy am I glad I found you. For the longest time, I thought I was going to go nuts! I've suffered from these headaches for nine years (I'm now 45 years old.) My first attack came after the birth of my daughter. I'll never forget it. It came on suddenly, and it was as if I was being stabbed in the left eye with an ice pick. The headaches have become chronic now, and I appear to be on a cycle of two weeks of daily excruciating pain for many hours, and two weeks of remission. Sometimes, I also seem to suffer from symptoms of "normal migranes" too (i.e. smell auras, intolerance to light, etc.) I was taking Relpax from my PCP, and that helped some of the time, but last month I finally dragged myself to a neurologist. He officially diagnosed me with Cluster Headaches and put me on 50 mg/day of Topamax. I think it might be helping because this should be the week that I'm trying to bang my head into the wall, but instead I've been ok. I feel a slight pinch of pain behind my eye and cheek, but not the excruciating pain that usually makes me wish for death! Also, I was just diagnosed with severe sleep apnea, and I will need to use one of those CPAP devices. Wish me luck. I'm happy to have found all of you, and I'm eager to read through all of this site! Take care. My thoughts are with you. Deb
Debby Rampolla <dmrampolla@aol.com>
Pittsburgh, PA USA
Tuesday, June 15, 2004 at 13:57:39 (EDT)

Hello All, I'm a 35 year old female. I've suffered from cluster headaches since I was 10, though I didn't find out what they were till I was 17. The last time I was in this site was about a year and a half ago. About two weeks ago I noticed the familiar symptoms of another onset. Dizzy spells, vertigo, lack of equilibrium. I tried to ignore them, but I knew what they meant. The headaches were back. Last week I got the first one, mild, but uncomfortable. Of course, I tried to justify it as a tension headache, then reality hit this Saturday. It hit me like a ton of bricks. Mostly I cried from fear. It's the one thing that brings me to my knees. I'm absolutely terrified of them. My husband and family gave each other the look "oh, no, they're back". I just went to the room and tried not to scream, while I endured the pain. I kept rocking myself in my mother in law's bed. I tried to force myself to vomit as it helps sometimes, but nothing would come up. My husband waited outside the door. He knows I don't want anyone to see me in this state, but he stays nearby just in case I scream for him. Finally, just when i thought I would start banging my head against the wall, it started to slowly ebb away. I have a doctor's appointment tomorrow. I need my medication and I want to ask him to prescribe the oxygen to me. Never used it before, but I see here that it helps many. I'm trying not to get too down or depressed. I have a job and a busy life. I don't want to think about how this will incapacitate me. For now, I need to print as much info from this site for my new doctor and try to get on the meds right away. I pray for all of you. It's a horrible way for any of us to live. But somehow I know if we've made it this far, we're a pretty strong bunch, hang in there. I'll be thinking of you and continuing to ask God for strength. Maria
Maria <mscala@polymedco.com>
Poughkeepsie, NY USA
Monday, June 14, 2004 at 16:08:30 (EDT)

I am 2 weeks into latest episode of CH. Have had periodic for 30 yrs. Cafergot is a lifesaver, but dont like side effects very much. I am trying to acquire an oxygen tank at this time. Sounds like it is very effective for you who have tried it. Doctors don't seem very knowledgable about cluster headaches. I have a suggestion for cafergot users. I chew up a couple pills and let it dissolve under my tongue. Seems to work faster at aborting a headache than just swallowing the tablets. Thanks for all the info and letters from fellow clusterheads on this site. For years I thought I was only one who got these dammned things. Good luck to you all!
Allen <alnaplby@yahoo.com>
Glendora, Ca USA
Saturday, June 12, 2004 at 23:42:48 (EDT)

I have had Clusters since I was 14 years old, I am 34. I got them every 12-24 months for six weeks. Iím using Imigran(Injekt) every 4-6 hours. Imigran is keeping me alive, but donít works every time. I wish the best to everyone. Johannes
Jůhannes <joigunni@simnet.is>
GrindavŪk, Iceland
Saturday, June 12, 2004 at 14:51:45 (EDT)

well hey i never knew what was going on until i came here my doc suggested that i check a few websites on CH i had my fist "attack" about 3 days ago(jun 8th 04)i though i was going to die it has lasted all three days so far now that i see i have up to a week or two of this i can only think " what fun!" but thanks for the info on home remedies ill try a few when i can finally move around the house with out colapsing on the floor for a hour or two
logan <Exxesprime@hotmail.com>
regina, sk canada
Saturday, June 12, 2004 at 03:32:07 (EDT)

hello fello clusterheads i dont usually do this but here it goes,ive suffered with the ch for about 20yrs now .I tought i had them beat was in remission for about a yr but sadly i had to break down and take the trip to the doctors for meds.listening to other peeps storys really touched me and i hope 1 day we can all have pfd's and no more cycles .tyvm whomever created this site now i no im not alone never give up and never give up hope : )
shane <esksfan67@hotmail.com>
canada
Friday, June 11, 2004 at 23:50:01 (EDT)

I have suffered all of them.....clusters side to side headaches that last for a whole month!!! l had the auras..... lights bother me..... now most of it is due to weather changes...... l have sufered headaches so bad l wanted to take the top of my head off!!! l have suffered with them since l was 5 years old...... my mother had them till she retired and l am slowly getting rid of mine and l am 60 yrs old..... my children have them and my grandsons also have them.Blurred vision is the worst and hearing becomes so acute you cant find any peace anywhere unless the house or apartment is GONE and darkness is a welcome friend. take care everyone ......l have all meidical pill you can think of and even a blocker with syringe but it back fired on me!!!!! l have to just ask people to leave me alone and pray l will come through it.....yes l have had x-rays and all that as well. No tumors thank goodness. Some day we wont need to worry about all this any more.... we will be free from it all. Thanks for allowing me to say my mind whats been on it a long time. Good Luck everyone .
DARLENE FINCH <superdoe@cogeco.ca>
HAMILTON, On Canada
Friday, June 11, 2004 at 22:09:34 (EDT)

I have been suffering from CH since I was 9. AS I get older, the bouts become longer and the pain so much more intense. As a child, I would be brought to tears within minutes, and then feel relief minutes later. Now, at 30, the headaches last for several hours, and I am in the 8th week of this bout. I find it more and more difficult to function during the DAY due to nocturnal headaches...what works? Everyone says quit drinking Diet Coke, coffee,...how do I make it through the day??? Has anyone ever noticed or recognized sugar as a trigger??? I need some help - I can't afford another visit to the ER, but I can't take the pain.
Amy Fisher <afish1974@aol.com>
Kansas City, MO USA
Thursday, June 10, 2004 at 17:38:47 (EDT)

I am 66 yrs. of age.In 1968,Iwas diagnosed with Hortons headache.My dr.told me that it may occur again in 2 or3yrs.He asked me to keep a journal if does.In 1971,it returned and again in 1974.CH IN 2004 Much less painful.
Charlie Fox
Buffalo, N.Y. USA
Thursday, June 10, 2004 at 16:54:45 (EDT)

Welcome to everyone who comes here to read the guest book. Please take a moment to check out the message board also. Those of us who have been around awhile will welcome you with open arms. We are here to support other "clusterheads". This is a great place to be with others who really understand your pain. Please do not be run off by the people who post here with gimmicks to sell or crazy diets that they say helped. CH.COM is not about that stuff. We don't want to sell anything and don't condone others who do. You will find tons of valuable info on meds, doctors, and more support than you could have ever imagined. If you have clusterheadaches, please join us. We are family, and you are home. Welcome. Debbie (aka "Little Deb") 26 years of Cluster Headaches 2 years on CH.COM
Little Deb <debbie4278@yahoo.com>
Youngsville, NC USA
Thursday, June 10, 2004 at 10:21:48 (EDT)

icant sleep at night my head hurt me so bad that it made me feel like iam going crazy
ray heastie <ray- ray>
nassau, bahamas
Wednesday, June 09, 2004 at 20:48:06 (EDT)

Welcome, if you are reading this page for the first time, some people have been posting here with cockamamie ideas on how to deal with ch. Please disregard this utter b.s. If I could grab hold of these people and let them know how I feel about their joking around about our/your pain, they would cease this assinine behaviour immediately. If it looks suspicious, it probably is ie, sinusbuster, cat urine -come on how stupid do they think we are. Come on inside and look around you'll find good advice here.
thomas

Wednesday, June 09, 2004 at 17:45:45 (EDT)

I have had Clusters since I was 12 years old, I am about to turn 48. When I am in my cycle it's a living HELL, but with the help of my wife I get through it. I
David Anthony Smith <tykim2@connecttime.net>
Gibsonia, P.A. USA
Wednesday, June 09, 2004 at 15:57:23 (EDT)

I have had Clusters since I was 12 years old, I am about to turn 48. When I am in my cycle it's a living HELL, but with the help of my wife I get through it. I
David Anthony Smith <tykim2@connecttime.net>
Gibsonia, P.A. USA
Wednesday, June 09, 2004 at 15:57:21 (EDT)

I try the paste. It workes best if on the neck and back of the head. It takes 10minutes to fix. I melt cat mixture in microwave, freeze into cubes, then take out and microwave on medium for 20 seconds to get rubber consistancy and apply. Daka
zach <zacharib@buda.hu>
Budapest, Hungary
Tuesday, June 08, 2004 at 13:41:25 (EDT)

Oh my God! I didn't realise I was in such good company! My head is splitting now,as it has been every week for the last 40 years! I am trying out the sinus buster and am managing to avoid the inevitable painkiller.Hope it works! All the BEST!!! Praveen
Praveen <praveen_sonal@yahoo.com>
Bangalore, Karnataka India
Tuesday, June 08, 2004 at 06:23:49 (EDT)

Hi All I have suffered CH for the last twenty four years I got them every 18 months for six to eight weeks. I have tried every know specalist and quack you can find. In the end I am sick of being a test case for these doctors who have no understanding what a Cluster Head is. just to share with you, the thing that has worked for me is that I gave up drinking coffee and diet coke and drink two litres of water a day. I have now missed the last two bouts. All so the only two tablets that did work for me 75% of the time was "zomig" and "imigran" here in Australia they are expensive but when you get CH whats the cost of Relief?? I hope this helps someone
Richard Verdouw <richard@greenwest.com.au>
Perth, WA Australia
Tuesday, June 08, 2004 at 03:15:25 (EDT)

Rereading my message I realized that the last sentences sound like I'm trying to sell something. This is not the case, I just wanted to say I'm ready to help out were I can and if the diet helps only one other Clusterhead, my day will be made.
Kytea <kytea@gmx.net>
Denton, TX USA
Monday, June 07, 2004 at 15:55:47 (EDT)

Hi, unfortunately my battle with CH has started long ago at the age of 12. During the years (I'm 32 today) the episodic clusters changed to chronic, so for the last two years I had chronic attacks being treated with O2, prednisone, cyproheptadine, topamax and lithium. The triptans gave me so much heart trouble that the ECG and heart stress indicators in th eblood went completely off. In the end my attacks lasted for more than three hours each at least two times a day. I was getting ready for the big operation, cutting all the facial nerves, but basically ready to try anything. On a German CH webpage I read about a success with extreme diet, copying the diet indicated for gout. After four weeks of eating EXCLUSIVELY potatoes, carrots, zucchini and the occasional apple I was COMPLETLY CH FREE AND HAD STOPPED ALL MEDICATIONS. Now I'm eating completely normal again and still headache free, but will go back to the diet as soon as the CH comes back. I don't know whether I was graced or whether the diet worked but it is a miracle. If you want more details please feel free to contact me.
Kytea <kytea@gmx.net>
Denton, TX USA
Monday, June 07, 2004 at 15:52:33 (EDT)

Hi fellow CH people. My first CH occurred some 4 years ago, I receive attacks every 18 months or so. Like everyone else who suffers from this illness its a nightmare! I am currently taking Deseril tablets 3 times a day [ Deseril is a preventive medicine]but this time the Desril is not working, I was in hospital the other night on the drip and with oxygen for 3 hours before I gained relief. I have suffered 2 CH bouts this night and looks like work is out of the question today as I have no real sleep or rest! Can you help me with the following question, like most people I like my coffee, recently we had an overseas trip and I had only 1 coffee per day, I think my CH`s have recommenced due to my body reacting to a lack of Caffine? - Withdrawal symptoms! Would anyone like to comment? Also a doctor advised me 4 years ago that Dark Chocolate, Coffee and Red Wine were major contributing factors - is this true? Best regards. Gary Johnston email is chalonsfield@yahoo.com.au
Gary Johnston <chalonsfield@yahoo.com.au>
Gold Coast, QLD Australia
Sunday, June 06, 2004 at 16:16:57 (EDT)

Hi-My name is Trish and I suffer with cluster headaches. This is my first time on this or any site and would really love to talk to someone who knows what I live with and get some suggestions on how to cope.I'm not familiar with how to chat since I'm a novice with this computer as well!! I've included my email address so if anyone is interested in helping I would be very appreciative. Thanks a lot
Trish <Trish861@hotmail.com>
Bethel, Ct USA
Sunday, June 06, 2004 at 10:46:41 (EDT)

I read the previous posts with interest. In my 1995 paper "Cutanous applications for neuropathic pain: A novel approach(J.Irrep.Results; 3:4,pp33-45;1995), I addressed the topic. Ammonia is indeed a good solvent for cutaneous absorption of carrying agents, and feline fecal matter is rich in taurine, an agent that can help stop the reuptake of substance P and inflammatory neurokinins. Cat urine can therefore give double benefits. So the combination will doubtlessly work to a degree, but beware: Many cat foods now have low taurine to avoid urinary stones, so don't feed this type of food to your cat if you want to enhanse efficacy (read the label on the bag). Covering the paste with the new "clear duct tape" from the 3M company seems to work well for my patients.
Nelson <N.Sanchez@lima.neuro.edu>
Lima, Oh USA
Friday, June 04, 2004 at 14:23:43 (EDT)

I think these messages took a turn to the odd, but here is something to think about: Cat urine is mostly ammonia (NH3). In a pinch, you could use the clay-based residue in a litter box as the emulsifiling agent: The clay-litter soaked with urine plus the "droppings" (I generally use another term), grind to a paste. *poof* you have all the ingredients for a topical paste combined from the same source (the litter box). I've tried weirder things...
Scot <Scotmeister@oakgrove.net>
Louisville, Ky USA
Friday, June 04, 2004 at 13:36:07 (EDT)

I once tried the household ammonia with bird guano. It helped, but kept running down the back of my shirt. It would make sense that the cat droppings would be more effective.
Mike <MikeS@Sinclairnews.org>
Jacksonville, FL USA
Friday, June 04, 2004 at 11:34:20 (EDT)

My husband has cluster headaches. I treat them by rubbing a paste of household ammonia and cat droppings into the back of his scalp when he is in pain. I don't know if it works or not, but he stopped complaining to me!
Lori <lori@pollard.com>
brunswick, ga USA
Friday, June 04, 2004 at 08:48:37 (EDT)

Hi...I first started my CH in 1985 (the year I got Married)not sure if this had anything to do with it? I get them for a two week period every May / June time, sometimes in October / November. I thought I had kicked them until a month ago, having gone three years without having a single bout. I do think the worst ones are the ones that wake me up around midnight. I would love to know why at the age of 25 did I start getting CH (I've been a good husband to my wife Lyn. Does anyone know at what age they may stop? Has anyone tried an ice pack? I did try one a work one Friday afternoon, it did go away after 10-15 minutes.......only to return in the bloody evening!! Thanks for allowing me to participate. Best wishes to all. Dave Hazell age 44.
Dave Hazell <David.Hazell@Honeywell.com>
Hillingdon, UK
Friday, June 04, 2004 at 08:31:55 (EDT)

I have had cluster headaches since medical school. I nearly failed my first year as my chronic cluster headaches were incorrectly diagnosed and I struggled through near the bottom of the class on some awful, useless concoction containing antidepressants and belladonna given to me by the student health center. Each night was a private torture and everyday a struggle with exhaustion and dull wits. Suddenly in the second year of medical school the headaches went away and I became one of the good students but the poor grades of the first year are permanently on my transcripts and I have had to fight to overcome them eversince. In my second year of medical residency the demon returns. I see my doctor who for six months treats me for "sinus headache". All the while my relationships with my patients, my colleagues and my family are suffering. Again I found myself becoming "bottom of the class". I confided in one of my colleagues and described to her my nightly ritual of being awoken almost exactly 45 minutes after falling asleep with my eye and nose running and then the rapid onset of brutal tooth and eye pain, and going outside in the garden and running up and down, banging my head on trees, squeezing my head between my arms. When I had finished my colleague looked at me and said she thought I had cluster headaches. Amazingly, she may have saved my life as I was reaching a point where I felt that my things were hopeless and suicide was an option. I couldn't take the pain any more and I couldn't continue to practice medicine in that condition. The primary care doctor I had at the time, a man of many years experience did not have the knowledge necessary to recognize this crippling condition, as neither did I ( although I was only 1 year out of medical school). My experience is that most doctors are aware that a condition exists called cluster headache but know very little about it, would not recognize it in a patient, do not know how to treat it and have no idea how devestating the condition is and how extreme the pain is. My attempts to educate them are usually met with disbelief and I fear that most physicians chose to continue to be ignorant.
neil <nrcollin@utmb.edu>
Galveston, TX USA
Thursday, June 03, 2004 at 15:17:19 (EDT)

Aw to have a day free of this all consumming pain.
Dotti <Happygma@aol.com>
Ogden, UT USA
Wednesday, June 02, 2004 at 21:15:06 (EDT)

I've had ch since 1975 (didn't know it back then). I was diagnosed in 1991 after 6 weeks of pure hell. My neurologist at that time put me on prednisone & indomethacin from Feb to May. I don't know if the episode ended or the medication kicked it. I didn't have another reoccurence until this past Feb. After 13 years, I couldn't believe they were back. To make a long story shorter..I tried just the indomethacin but that made them worse. I work at University of Iowa Hospitals & can't get in the Headache clinic until July 28th!! Thankfully, my sister knew a PA that works in our Emergency Room. She talked with a neuro doc & I have been headache free 3 weeks today!! I take 25 mg of Elavil at 9:30 pm and 120 mg of Verapamil at 9:30 am. So far, it's working for me. For awhile, my best friend was my oxygen tank & mask. Thanks to all the wonderful web sites & messages, I don't feel like a lone wolf anymore. At least, I know what I'm fighting & have lots of information from all of you to help me fight this 'beast'!!!
Doreen Strabala <doreen-strabala@uiowa.edu>
Hills, IA USA
Wednesday, June 02, 2004 at 15:27:19 (EDT)

Hello, Im a veteran ch victim. 36 years I've suffered. Haven't found a med I like yet. Just lucky I have the most wonderful wife and kids in the world. I wouldn't be here if it wasn't for them.
dean marola <nywhip@comcast.net>
clinton township, mi USA
Tuesday, June 01, 2004 at 17:40:52 (EDT)

Hello, I am a cluster headache victim. I am now 48, and have suffered with these mind blowing headaches for 20 years. I am having a bout with them now, for the last 3 weeks. Just in the last 3 years I've been recieving help. Before that my family doctor was treating me for sinus infections. I'll just say I took alot of medicine that did nothing for me. I will be so... glad when this bout is over, because it really is treible to go away, in fear of an attach. I get them at night, and during the day, even at work. It is really hard to keep myself together some times, but I bare thru it all. I wish the best to everyone. Donna
Donna <rs_grrl@hotmail.com>
Denver, Pa USA
Monday, May 31, 2004 at 21:44:07 (EDT)

Joann1945: Unfortunately, many doctors still segregate women into certain headache groups, and rarely admit women can indeed get cluster headaches. Because cluster headaches occur much more frequently in men, women often get unfairly misdiagnosed. I found a wonderful neurologist who has helped me immensely. I get migraine/cluster combos (Yes, they do exist). Headaches that have symptoms of both. Sometimes they are clearly migraines, but sometimes have cluster symptoms as well (that's when it's the worse, the plain migraines are easier to manage and tolerate.) Your headaches certainly sound like clusters, but because they are not terribly excruciating, don't be surprised if you have migraine-cluster combination headaches. Mine react well to the newer migraine meds such as replax. Cafergot (a popular cluster med) simply has too much caffine for me to feel comfortable taking, especially when replax works. Also, my headaches started at around 40, and only arrive during my pre-menstrual and post-menstral days. Usually I am able to make it through the rest of the month headache free. I noticed you began yours later in age as well. I am sure these headaches are hormonal and am hoping they will disappear as I age.
Laurie
San Diego, USA
Monday, May 31, 2004 at 14:33:37 (EDT)

I think i may be suffering with cluster headaches
jenny <marsjen59@yahoo.co.uk>
scunthorpe, uk
Sunday, May 30, 2004 at 12:56:42 (EDT)

Now I know why people order medication oner the internet. Finding a doctor who is willing to help is not possible in Cincinnati. They all act you're an addict. I'm not but I;ve been humiliated in ER's and in doctors offices many times/
Carol <andra@earthlink.net>
Cinn., Oh. USA
Saturday, May 29, 2004 at 05:34:08 (EDT)

Hello, This is an apology and a Thank you!! In 2002 Feb. 8th I posted a comment on the message board "I found total relief" Recently individuals commented on these message boards popping up when my name is search in yahoo. When I first posted "I found total relief" I had just had a trigeminal radio frequency rhizotomy surgery for my cluster headaches. I thought I could encouragement to others (Who fell into the Chronic Cluster Headache catagory and needed a last resort option. Unfortunetly I found this sight after my surgery and suffering for 4 years alone because my doctors decided I had severe psychiatric problems. Especially after I shot myself because I was tired of a strange pain that came every three hours on the left side of my face 24/7 with no periods of sleep. After I posted my surgery I was amazed at the negative emails, comments and some that were even filled with hate and disgust that I even posted such an idea. I decided not to tell my story or become involed. I wanted to forget that I was locked away and my family and fiance left me. I should have stayed involved....."For that I apologize and I am sorry." In June 2001 of I had the surgery and now this June 3 I am going back again for the same surgery.......Same great Doctor, same great hospital......and the same incredible risks. But if someone falls into my category. (Chronic Cluster Headaches which are refactory(nothing works)to medicine. I have a headaches every 3 hours, left side 24/7 and don't sleep. They started in 1996 when I was 26. I don't know if anyone is interested about:"The bestlast alternative, before the bullet." Let me know! I will post my story or you can email me with any questions. I am excited and amazed at the information, research, and changes taking place. Yet, I am sad there is not a cure yet. Yes, a cure. "A CURE" which I believe will come from the patients. I want to help find a cure. "Passion, a need for change under extreme circumstances, should bring forth new innovations and ideas." Some of the greatest advancements in medicine came from men and woman, who were not Dr.s or even directly related to the medical field. Sincerely, Crazy Kris Kris@martinellimusic.com
Kristofer Martinelli <kris@martinellimusic.com>
Simi Valley, Ca. USA
Thursday, May 27, 2004 at 05:01:09 (EDT)

Hi--I am a otherwise healthy 58 year old female. my cluster headaches started about three years ago. At first, I thought it was my sinsus but after going through a lot of test at the Jefferson Hospital in Philadelphia at the headache center, I was diagnosed with cluster headaches. Mine wake me up shortly after I fall asleep. the other night i had four. I wet a towel, put it in the micro wave and then pat around my eye and temple. most of the time, this stops the pain, only to be awaken again in a few hours. Last night I was really lucky----I slept through the night without any. i made an appointment at the headache center for July 15. I think this doctor is pretty good, You don"t know how many I went to and explained my problem and they had no idea what was going on. On my first visit to the headache center he "hit it right on the head"{NO JOKE INTENDED)Presently, I am trying a few things that I read on the web to eleveate them. I will read your post here and maybe get a few other ideas. I am so greatful that I do not get these during the day.
JO ANN NANCE <JOANNN1945@AOL.COM>
CAMDEN, NJ USA
Wednesday, May 26, 2004 at 21:53:44 (EDT)

I am brand new to this site. I am 45, male, happily married, proud father and the owner of my own batch of cluster migranes for the last 15 years. I am a lucky one in that my clusters last 14 days almost exactly and I get them just over annually. If I was like some of you that get them for weeks I would have to jump off a bridge...not that I haven't thought about it anyway. I have many questions as I am sure most of you have had. I finally went to a "Headache doctor" today at my family's insistence. My other doctors have been little to no help and fought with me to give me Midrin which was the only drug I have ever used...with marginal results. When the clusters are bad the midrin does nothing. And in my desperation I always take more than what they say. Today's headache doctor gave me Imitrex injections and Predisone(?). It is 9:30 right now and I feel fair...but I have been having this bought for 10 days now and sleeping at night has been horrible. I have slept about 2 hours at night over the last 2 days and I am beat. So...what now? Am I cured? Any suggestions or questions of me? Here's to no brain splitter tonight!!
Nate <ngilman@cfl.rr.com>
oviedo, FL USA
Wednesday, May 26, 2004 at 21:32:14 (EDT)

I am a 30 year old law enforcement officer and a 12 year sufferer of cluster headaches. I have been fortunate compared to some on this site. My cluster headaches weren't properly diagnosed until 5-6 years had elapsed and I had finally gotten up the nerve to see a neurologist. My headaches started out as text book although less frequent than most. The episodes only began to occur once every 3-4 years usually in the fall. Over the course of the last 12 years that has changed. The episodes have slowly dwindled down to every 3 years, every 2 years and most recently every year. The pain, for me, centers in the right temple and behind the right eye. My right eye leak like a faucet, my right nostril will run and I will have a tremendous amount of pain behind my right eye. The episodes used to come on quick and disappear just as fast as they do with the majority of sufferers. However, as the years go by, specifically the last couple episodes, things are changing. The BEAST comes on slower and takes its time leaving like it wants to torture me. I've tries Imitrex, Wigraine, Midrin and Predisone before, all without success. The only success I had was with Depakote, but recently that isn't even doing the trick. It's as if the BEAST is figuring out how I'm treating it and finding a way to beat the medicine. In addition, this is my first episode during the spring. As the pattern changes, I grow worrisome. I'm about to head back to the doctor to seek both preventive and abortive meds for the first time. It's nice to see that I'm not alone. Hang in there everyone. We will kill the BEAST someday.
Matt J.
Harrisburg, PA USA
Wednesday, May 26, 2004 at 20:04:14 (EDT)

Hi , Name is Ray Finaly after 20 years of cluster headaches the two meds in combination RRRRRRRRRRRRR Sancert and cafagot must be taken at the same time. IT WORKS Thank GOD RAY.
Ray Gagnon <maggieray@xpressamerica.net>
Biddeford, ME USA
Wednesday, May 26, 2004 at 10:16:58 (EDT)

I have been dealing with these unbareable headaches for 7 years now. I finally was able to get health insurance to have all the tests I needed to have done. My doctor put me on Depakote. I have not had one in over a year.I highly recommend Depakote.As a single mother, working full time it is a god send.
Lisa R <leezon12@hotmail.com>
redford, mi USA
Tuesday, May 25, 2004 at 22:10:00 (EDT)

Hello. I never had a headache until 2 years ago and I am 55! I was diagnosed with a rare type called 'hypnic' headaches, as they come every night and only at night, but lasted at the time for anywhere from 6 - 8 hours EVERY NIGHT, always starting between 2 and 4: 00 a.m. Preventives did not work, and I ended up with rebound headaches by this past Christmas on Zomig. The neur. said I will probably always have them. Then the neurologist told me this winter that she thought I also had cluster headaches. I have had 340 headaches since April/2003. I had to quit work in Apr.'03 and returned back half-time in the afternoons last Dec. I started going to a naturopathic dr. in Jan./04 and the headaches are now less severe. I also may have 5 nights without one, but then 7 nights with one. I hadn't had that before, and think that is why the neur. says I have clusters. As a woman, I know that it is even rarer for me to have. It is very frustrating due to the fact I never even had a headache till 2 yrs. ago. I empathize with anyone having had them for along time. I've learned to enjoy the times I don't have one, and tell myself "This too will pass" when I do have one. Thank heavens I have a wonderful husband who is supportive!
lennie taylor <shelennie@sympatico.ca>
Caledonia, ON Canada
Monday, May 24, 2004 at 20:34:34 (EDT)

I consider myself very lucky compared to some on this site. My first experience with cluster headaches was back in 1989. I was 37 at the time and working in a very stressful situation. I think that was what triggered mine. I suffered through several episodes. It never failed to wake me up right at midnight every night. I got to where I dreaded going to sleep at night. I finally went to see a neurologist and he prescribed Inderal LA for me. Within a week the beast was gone. He didn't show back up until the spring of 2002 after I had gall bladder surgery. That was a delightful 13 years in remission. This episode lasted about 4 weeks and then went away. Now, May 2004, I am in the throws again. I commend everyone who is responsible for this website. It has so much good information. Just reading the commentaries of others, encourages me, but at the same time saddens me. I would not want to wish this disease on anyone. I am finding a lot of other folks around me who have suffered in the past with this thing. Life doesn't stop just because you have a headache, does it? You have to do the best you can and cope with it. Keep up your faith. Pray to God that relief will come soon.
Robby Davis <davisrg@cpchem.com>
Baytown, Texas USA
Monday, May 24, 2004 at 16:44:07 (EDT)

Having suffered a horrendous headache (worst ever!) for 10 weeks, and being treated by my doctor for migraine, I was finally admitted to hospital in April and diagnosed with a brain aneurysm. This was operated on and I had clips fitted in my brain. Am now dosed up with pain killers. Unfortunately I have been left with double vision. At least I am still alive!!
Nicky Appleby <Nappleby13@aol.com>
Taunton, UK
Monday, May 24, 2004 at 05:41:41 (EDT)

I have suffered from migraines and headaches for 8-10 years and last November suffered a major stroke - 66% of the right side of my brain dead, a devastating event. The neurologists call it a spontaneous dissection of one of the main arteries going to my brain.I was 43 yrs old when this happened and in good health, 155 lbs with low blood pressure, a healthy heart and no abnormal thickness of blood. Now, as a stoke survivor, My conitive problems are bad, but I think a lot about the headaches and medications I was taking and wonder what role they may have played and I think other headache sufferers should be aware . The day of the stroke I had a blistering, killer migrain headache that I believed was a migraine. I took two 50mg Imatrex plus a two fioricet within a 6 hour period. Then in the hospital a few days later with a horrible headache and morphine just barely holding it at bay, I asked about possibly taking some Imatrex and was told it was contraindicated for stroke survivors, I've never found out why, but it makes me wonder if it played a role in the stroke - the doctors say that it played no role. I feel alone with this and wonder if there are any others like me. Jeff
Jeff Smith <zonajeff@excite.com>
Tucson, AZ USA
Saturday, May 22, 2004 at 14:11:58 (EDT)

I wake up with headaches so bad that I end up to sick to go anywhere.
Donna Nixon <sugarbendmom@juno.com>
Hamilton, AL USA
Saturday, May 22, 2004 at 11:37:29 (EDT)

I last visited this site about 3 years ago. I thought it was for the last time. My doctor told me back then that if I went one full year without an episode, I would never have one again. I went 3+ heavenly years wihout an episode until last night. I thought I was going to throw myself off my balconey. I have been living in Guadalajara, Mexico for the past 5 years on temporary work assignment and since the last time I purchased Imitrex injections they have stopped importing to Mexico. I have two questions for anyone listening. What research has anyone heard of with regard to gaps in episodes lasting for 3 years ? and can someone updat me as to new medical options available that may have been developed over the past several years. Anything as quick as The "I" injection ? Thanks for listening. Tim
Tim Willing <millerpk@prodigy.net.mx>
Victor, ny USA
Friday, May 21, 2004 at 19:21:00 (EDT)

i to suffer with the cluster i am to scard to sleep i drove my self to hospital on tusday at 2am thank goones there was now cars on the road as cood not see much the pain was to grate we need help start a help groop
derek mclardy <ps@king-pin.co.za>
p.e., e.c. south africa
Thursday, May 20, 2004 at 20:30:53 (EDT)

Just to say Hi and thanks to all of you. Following this epic web site other really good sites on CH opened up my mind 2 yrs ago, when I had my first cluster cycle. I am 36, episodic, and found that verapamil and Imigran (Imitrex) are working quite well. Always the same attack, right side, tears, nose dripping, and a feel that my eye is popping out in flames from the head. Pain like a hammer, unbelievable. 1 attack a day. Perfect chronograph accuracy: 1.30 night time or 23.30. Every time. What can I say more? That my beast is tough and no friend could understand what I do when it comes. But I see I am lucky, because others are suffering much more than me. When it comes: think, think, don't stop thinking. Move slowly your arms, swinging towards. Never lay on bed. And keep the faith. If we can resist to the beast, we can really resist to all life's events. Cheers Lorenzo
Lorenzo <lorenzopozzi1@tin.it>
MILAN, - ITALY
Thursday, May 20, 2004 at 16:06:44 (EDT)

BBC News has an interesting story on the internet about a new campaign called Lifting the Burden which is to deal with the "global burden of migraine." The sampaign says "better education among health professionals will improve care. the initiative is to target both developed and developing countries. I was cheered to read that "it is widely recognized that on a global scale, headache disorders have low priority when it comes to allocating health care resources," but then let down to read that "campaign organizers believe the most effective way to deal with both issues is better eduation for health care providers." Participants in this are the World Headache Alliance, the Internatl. Headache Society and European Headache Federation. The campaign is headed by British Dr. Timothy Steiner and the umbrella organization is World Health Org. I sent this info to OUCH U.S.A. Anybody out there who is pain-free at this time and has the time and energy might want to plead the cluster case and desperate need for RESEARCH to Dr. Steiner at Imperial College, London. (I haven't sought an addressed for him yet.) Also, Apparently the British Medical Journal is citing a large study which finds that acupuncture is a useful way to treat chronic headache and "may even be superior to conventional treatments." Apologies to those of you that acupuncture has helped, but I don't think that's most of us. As always, my thoughts are with those of you in pain and those of you suffering discouragement about your life. Such a hard road we tread sometimes. God be with you. B.Young@xorbit.com
B Young <BYoung@xorbit.com>
USA
Wednesday, May 19, 2004 at 14:09:02 (EDT)

Man, I'm suffering from a cluster headache right now (fortunately the couple of Panadol has kicked in so now the pain is not so bad that I can't even think!). I'm getting really concerned since this is the second time I've had a serious bout at work and realising there's nothing I can do about it just makes me feel worse. It's great to know that you indeed do have this website though and knowing that there are many others out there who suffer along with me at least makes the ailment seem more credible! I hope a cure surfaces in the near future for this most horrible of headaches since it is quite impossible to live normally with it tagging along!
Mark Goninon <brigandson@hotmail.com>
Perth, WA Australia
Wednesday, May 19, 2004 at 02:18:17 (EDT)

Hi everyone, I'm Dave from New Zealand, I posted a message on this site quite a while ago but I guess it's disappeared somewhere into the archives along with thousands of others, well right now it is 08:30am wed 19th may ...I've been awake since 01:40am sunday morning with this monster, I have just had two injections of pethidine and one of metoclopramide which helps to stop the nausia from the pethidine, this is my last resort to try and knock me out so I can get at least a couple of hours sleep ..yep I've tried every preventitive that's been made and also tried all the alternatives as well ..acupunture ..herbal etc etc..I think I've had about 8 days so far this year with a clear head, I've been hospitalised 9 times since mid december and as you all can imagine at this stage I'm close to trying my luck walking in front of a bus or whatever it takes to stop this! I am only able to concentrate enough to write this because the peth has finally started to kick in ..so in about 15 mins (I hope ) I will finally get a brief rest from the pick ..I'm 45 years old and I had my first cluster at the age 15 ..but only had 3 or 4 up to 17 years and it's been full on since then until I was about 39 ...I had nearly 4 years of normal life but then they came back 2 years ago and I've had then ever since ..I am averaging about 3 to 4 days without them every 5 or six weeks ..life right now sucks ...I have two little girls of 6 and 8 ..they are the only thing that keeps me from topping myself ..I'm strting to get sleepy so have to go .. the best of luck to all of you out there, dave
Dave Russell <davo41@hotmail.com>
Auckland, N/A New Zealand
Tuesday, May 18, 2004 at 16:52:25 (EDT)

I am 23 and have been suffering from severe headaches for about 3 weeks. The last time I had an attack was about a year or two ago - I can't quite remember, but it laster about 2-3 months. I get them throughout the day, maybe a day or two free of pain. I get in the temple above my left eye and behind my eye. It feels like someone is trying to push my eye out with a spoon of something - its so difficult to describe. I thought that I was suffering from migranes, but today i started to look on the Internet and really feel that it is cluster headaches. I get an extremely teary eye and often drooping eyelid as well as a runny nose or blocked nose with the pain. It has really affected my job and I feel isolated and scared. I always seem to be rolling around in agony and crying with the pain when I get my attacks which usually start before I sleep or when I awake, followed by other attacks during the day. I have been feeling very depressed and always start feeling like I need to beat up another part of my body so that I can feel pain somewhere else. I have also been an insomniac for about 6 years and have recently reaslised that I suffer from most forms of it...which makes it even harder. Finding out that I may have cluster headaches is a relief as I at least know what is going on and can now put into words to a doctor what I am feeling. My headaches also seem to make me feel nervous - causing me to stutter and shyness. i have also started to find my thought processes do not work very well after the most severe attacks and re-attacks. i feel very exhausted. I am so glad to find this site and upon reading the first page I cried, because it is so good to know that other people out there are suffering with me and understand my pain. At the same time this makes me very sad, because I would not wish for anyone to have to feel like I do. Thankyou for your site and for listening. I hope that I come to know you as the family you appear to be. Thankyou for being out there and supporting all those who suffer. Lots of Love, Rachel.
Rachel <rachel.smith@talk21.com>
Ipswich, UK
Tuesday, May 18, 2004 at 07:24:30 (EDT)

I am sorry to have to be a part of this as you all are but am so glad to know others who share this nightmare. I am 43 and have suffered from episodic clusters for the last 26 years. I pray that god has some reason for this pain as I do believe in god and if he let his only son suffer so badly, why should I be exempt from pain. I offer it up to god for the salvation of souls as this gives my pain meaning. I am no saint and I pray for relief often and aggresively treat with multiple medicines and o2. My husband is very supportive and sympathetic. I have taken all the medicines listed over the years with varying successes and combinations. My body adjusts over time and the head pain comes back. fiorinal is the best analgesic for me but it stops working when they get real bad. Please write me. I have a wonderful doctor here. Dr Roberta Rose. She understands the nature of the beast and will call me back if I need to call in the middle of the night. Thank God for doctors like her as you all know they are not like that.I am considering going to the OUCH conference in July and wondering if anyone can give me feedback that has been to one. God Bless All Of You, and help you with your cross.
sharon svatik <ssvatik@harris.com>
Sebastian, fl USA
Monday, May 17, 2004 at 16:20:51 (EDT)

I have had my cluster headaches for about four years now.I thought that I was alone.Every night I wake every two hours whining and moaning my wife thought I was crazy the first time this acurred . She would get so annoyed with me but I tried to explain afterwards that I could not help it.THE PAIN WAS SO BAD THAT I WANTED TO CUT OUT MY EYES!The doctors told me to take motrin and it would go away I thought to my self were did you get your degree the cracker jack boxs? rich,
rich <lovebirds@finalcom.net>
silver creek, ny USA
Sunday, May 16, 2004 at 17:26:27 (EDT)

I suffered with Cluster headaches right above my right eye for years and nothing, and I mean nothing helped. No pain pill could touch it and when an episode happened I was almost incapacitated. I'm a chiropractor and I do a LOT of research. I read in one of the science/medical journals that they are now relating it to the hypothalamus on same side as the cluster headache. In CT scans they found that during a cluster headache the hypothalamus appeared "cold" in other words the hypothalamus isn't working properly and that is what causes the headache. Having a basic understanding of brain physiology and how it works I contacted a "Carrick" chiropractor. This is a chiropractor who has taken an additional two to three years of training beyond the six years college and graduate work required to become a chiropractor. (Please note: this is NOT an advertisement for me I DON'T do "Carrick" chiropractic and had to find one myself.) They tested me and through examination found out the right side of my brain wasn't working up to par. They gave me exercises they call "calisthentics for the brain". These are not regular exercises. You're basically sitting still but your brain is working, i.e., eye movement, etc. I did the exercises and it took me about three weeks. I no longer have cluster headaches at all and it is a blessing. For information on cluster headaches and the hypothalamus you can go to google and put in those terms. For a Carrick chiropractor in google type in "Fred Carrick",he's based out of Florida but lectures worldwide and he has a diplomate course in neurology for chiropractors so "Carrick" chiropractors can be found worldwide. The chiropractor I went to is in Georgetown Texas her name is Julie Allen and I think her practice is called Allen Chiropractic Neurology or something like that. If you have tried these search terms and still can't find a doctor drop me an email. But please try those terms first. I want to help others but I don't want to get overwhelmed, okay? Thanks and good luck. Roxanne Smith, D.C. Austin, Texas
Roxanne Smith, D.C. <drlaser@earthlink.net>
Austin , TX USA
Sunday, May 16, 2004 at 13:07:44 (EDT)

hey, i am 17 years of age and i have been under the influence of the BAND for about a year and a half now, i am a chronic sufferer , having about 15-17 a day, tis not cool although they are not always very painfull i tend to ave about 2-3 really really bad ones each day. the amount of times my teachers friends have asked if i wanted panadol it is not funny. i have taken 4 different types of med, none of them did any difference though. i was hoping that they would go after the years went on, but i don't think it will now, after reading the replies. my sympathy goes out to any of you who has even sufferered from it once. i would like it if someone would please talk to me about this, all i ask is that you put Cluster Headaches as the subject so i don't delete it. thanx
Michael Murphy <Siro_666@hotmail.com>
Melbourne, Vic Australia
Sunday, May 16, 2004 at 05:45:04 (EDT)

I ran across this site by accident. I was sitting here dreading going to bed, fearing the 2 hour wakeup call from the Cluster Monster. I feel a little bit better knowing there are others ut there just like me. I thought my headaches were a thing of the past. I had been in remission for the last 2 years and it was a happy time. My family does not understand what I mean when I say I have an instant headache, but I know you guys really know what I'm talking about. I has been 4 days now and I have a total of about 12 hours sleep. I can't decide if I am actually alert or if I am so sleep deprived at this point I can't tell the difference.
JJ
USA
Saturday, May 15, 2004 at 23:40:21 (EDT)

i life for more dan 10 years white tis devil . three times aday for two month's . 2 times in one year than i'am free for 2 years this is ferry hard for my children and wife but for myself also.i now what shit happens main's now,i'am also can not type good engels i'am sorry for that
kris gorris <kris.gorris@pandora.be>
schelle, antwerpen belgium
Friday, May 14, 2004 at 15:50:17 (EDT)

I just came on this site. I have been having headaches since I was 17. Every year or so I go through a Month of Hell, followed by the fear that they will come back again worse than before. I have found that a cool dark place with a fan works far better than heat. I have learned that fighting with the pain usually just makes the pain more intense. I try to completely relax, this is sometimes a true struggle to do. At times it works sometimes the pain goes on and on. I am lucky to have a truely understanding wife and family. My co-workers have grown to understand when I need to get on the O2 and just leave me alone for a while. In the early years I went from doctor to doctor being diagnosed from having bowel obstructions to allergies. Sansert,caffergot,inderal, MRI's CT's and so on. You all know the routine. Then I got on to a wonderful Neurologist. She pin pointed just what I had, Cluster Headaches. At least I now had a name for my hell. I tried to knock myself out by putting my head through a wall. Just had to fix the hole in the wall. Pulled my hair, rubbed my temples, nothing worked until I was prescribed Imitrex. My problem now is trying to get enough to last through these episodes. How do you fight the Insurance Companies that say you can only have 18 pills a month, when you have 3 headaches a day. You do the math. I know that some have contemplated suicide. To this I say-DON'T. Understand, your family truely loves and understands what is happening. They live through this hell also. They have their own specific pain, in their hearts. The pain will go away. Value the time you have pain free and live life to the fullest until the pain returns. Right now I am on week 4 of the latest cycle. Yesterday was a pretty good day, only one episode. I think this series is winding down. I have been told that after 50 the devil may go away forever. I pray that this is true. I do know that the last remission prior to this episode lasted three and a half years. This was the longest timespan I have ever experienced. Well, just wanted to share. Glad to know that there are many others to lean on and share with.
Clifford Sauer <cliffordsauer@hltinc.com>
Cleveland, Oh USA
Friday, May 14, 2004 at 08:44:44 (EDT)

i want to say goodbye to a heck of very nice ,mature members i am a grandpa not going to tell my age but you could say Ive done my time. of the over 6 thousand members)i used to be a member, but have decided to move on alone with our disease.i wish you all good luck.the reason i quit was due to a few immature kids i call them bullys,attention seekers,down right calling me a mother fucker and my gi buddy(thomas)aka drill sgt.thanks thomas u helped me,renee u too texas rules see ya soon) motherfucker. my kids are 30yrs and I was going to show them this cool web site that papa found but i raised them not to call another human motherfucker unless u were face to face whereby the sender of such would be recompinsed with the same or better grandma would mamma slap them.to the other members that are adults dont let these kids push u around its your web site too.u got rights your the majority i think
mark
USA
Thursday, May 13, 2004 at 09:25:44 (EDT)

I don't know if I have cluster headaches or not. I do know that I was in an accident a month or so ago my head hit the steering wheel of the truck. Since that time I have had severe headaches that won't go away. I take medication and all it does in dulls the pain for several hours and then it comes back. I guess my question is can a concussion cause migrane type headaches???
tim tirey <flymvc@frontiernet.net>
monroeville, al USA
Tuesday, May 11, 2004 at 16:46:18 (EDT)

HAY EVERYONE Wow i feel great to day .Itís about time. There is life with cluster headaches. They do stop from time to time thank god I donít know about all of you but the headaches free days i have itís like i have been reborn. It like god had been sent to earth just for me. letís see if i can put this in to words. I can see the lights !!!!!Some people never see the lights in there life thatís sad...People that have cluster headaches will see the light im sure of that one way or the other. Im sure all of you been to hell many many times..Hope all of you see more light days then dark. I can hope canít I...Fourteen years and still kicking. Fu-k the beast. And we all will beat him!!! This site is going to ..Thanks to DJ. There is so many more people every day coming to this site. We have to find a cure. Something is causing them. So all of you link up and help PS Hope this brings some hope to all of you.....eggie
john stockwell <oracle1960@yahoo,com>
west townsen, MA USA
Monday, May 10, 2004 at 22:31:14 (EDT)

it is pretty sad to see how some people feel that the possibilty of some relief for ch could be there. I told you that I am a cluster suffer also, I just do not sit and complain about it, I have and will continue to try to find some relief for it.I have had it for over 7 years, I hate what it does to me when they come on. For those of you that want to just sit, I am sorry for you, you say a cure, I did not say anything about that, I said it worked for me. by the way ..bill, Tia, kevin, I started to have a few glasses of wine 4 days after, and we all know what alochol does for that! I am sad for you...good luck!
thomas1379 <thomas1379@hotmail.com>
LYNNWOOD, WA USA
Monday, May 10, 2004 at 22:25:55 (EDT)

Hi all....I have been on verapamil and lithium which seemed to work for my clusters. All of the sudden, when the spring rolls around, the clusters come back and the imitrex doesn't seem to work anymore. Neither does the lithium or verapamil. My doctor wants to give me a shot of novacaine in my neck when I have a cluster. He says this should stop the clusters. Has anyone ever heard of this before? It sounds kind of weird, but I am willing to try anything. Any other suggestions? Please email back..... Thanks.......
Scott <ScottF651@aol.com>
Philadelphia, Pa USA
Monday, May 10, 2004 at 18:17:02 (EDT)

Hi, just on my own I don't know anyone who suffers. Need a cluster buddy!!!
James Wilde <james.wilde@whitbread.com>
Northampton, England
Sunday, May 09, 2004 at 17:02:14 (EDT)

for a reply on re: stopped it cold, it has now been 9 days and no cluster headache, these natural supplements from shacklee has not only worked for me but a friend that I work with has started on them also, it seems to be working for him also. It really is up to you if you want to try for any help, the doctors has not worked for me. by the way ....no copper braclets, been there also. really no fast buck here....as I have or hopefully had the same problem. we all could just keep paying the drug stores.....
thomas1379 <thomas1379@hotmail.com>
lynnwood, wa USA
Sunday, May 09, 2004 at 15:41:45 (EDT)

I just found the site, I being having CH for the past two months...Thanks for the info and knowing I am not alone...
Victor Moreno <vmoreno05@yahoo.com>
Dallas, Tx USA
Sunday, May 09, 2004 at 00:40:59 (EDT)

Hi fellow sufferers. I have had these sine 1975. I've had good years and bad years, but have only had a few years when I did not have an occurrence of them. Mine are left side, wake me up at 1-2 AM, last 1-3 hours and are usually between a 7 and a 9. Only had a couple that were 10s and had to go to the hospital. I've tried alomst everything I've seen here tonight except for a few of the vitamin and herbal remedies, which I intend to try very soon. I am in a cycle right now that started three days ago, brought on by having a couple of beers (the worst enemy of a CH). The one two nights ago was a level 8. I historically have gotten them in two groups a year (spring and fall) and they usually last 6-8 weeks. I have tried the oxygen, have been on Verapamil for 25 years (no help), have taken up to five Extra Strength Tylenol, cold packs, hot packs, prescription pain killers, ergotamines, etc. I have found something that breaks the cycle though. It has worked for the last three years. My doctor put me on a Prednisone MedPak. You take them in decrasing amounts for about 7 days, slowly tapering off of them. It has shown to break the cycle as soon as I start, but some shadows still appear (I can live with them). You start out taking six a day, then taper down to one (4 Mg each). The last cycle, when I stopped taking the Prednisone they started to return so my doctor kept me on a reduced daily dose of 2-4 Mg for another 3-4 weeks and they did not return. I will keep trying this method as it works for me but beware that usage of cortosteroids have bad long term effects. You'll need to get periodic checkups from your doctor to make sure you're not having any adverse reactions. I sympathize with all of you because I was a pilot and was always afraid that I'd have one when I was flying (don't do that any more). They robbed me of years of my life and hundreds of nights of sleep. I do plan to also try the Vitamin E and Zinaxin that I read about here tonight. Keep up the hope, maybe someday there will be enough of us out here to warrant a drug company investing in the research to find a cure. Good luck to you all. George
George Davis <ironspud19@aol.com>
Fairmont, WV USA
Saturday, May 08, 2004 at 22:53:28 (EDT)

I also have had these cluster headaches for the last 7 years. It is very hard to explain what you are going through when one of these sessions comes. I have been to several doctors they seem to know what it is but not how to treat it. I like I am sure every one else have been through the drugs that they give, all they do is try to mask the pain or just put you to sleep until it is over, but what do you do tommorrow or the next day?? I may have found somthing, my wife and I belong to Shaklee, I put my self on a some natural supplements, I take these three times a day, it stopped it cold!! I would have not believed it if I had not done this for myself. there is NO SIDE AFFECTS. As we all know we would try anything to get just a little relief, well I may have found somthing for all of us. e-mail @ thomas1379@hotmail.com
thomas1379 <thomas1379@hotmail.com>
lynnwood, wa USA
Saturday, May 08, 2004 at 17:23:25 (EDT)

Hi everyone, After suffering from CH for 8 years now this is the first time I have looked at this web site and I just want to say thanks to all of those who have shared their stories and for making me feel like I am no longer alone and that I have not just got a low pain threshold, as has been suggested by some of the medical proffessionals I have been to see!!! I have found in the past that there is very little understanding of, or empathy for this curse and having visited casualty on many occassions I have still not been given any adequate sources of pain relief. Two years ago I stopped going to the doctors and stopped visiting casualty as I felt that it was pointless. I never believed that I would say this but in some respects I am lucky as I only suffer from this twice a year for about three weeks at a time. Reading your comments has made me realise that I don't need to be afraid to ask for help again and that I don't need to live just trying to get through this day by day!
Nicky Swales <nickyswales@yahoo.co.uk>
Middx, Great Britain
Saturday, May 08, 2004 at 15:22:51 (EDT)

Hi everybody! It's been 2 years since I last got on this sight, which means it has been 2 years since my last terrible attack. I am a manager for the worlds largest pharmacuetical company and therefore get to see drugs we manufacture help others every day. Other than CH's I am completely healthy and even played baseball professionally for several years. But when my CH's come back, I get to be the one on the receiving end of medicines like prednisone, varapamil, etc. Thank god for drug companies, otherwise, we would have to suffer more than we already do. Today, I went to the doc to have him prior auth. an oxygen tank for me. I also began taking Verapamil about 5 days ago and it seems to be beginning to kick in (my CH's are diminishing). The newest thing I have found to help with the "dull" pain after an attack is Bextra 20mg. It is one of my companies drugs and completely safe. It is a COX-2 inhibitor and needs to be taken once a day (COX-2's are safer on the stomach than Motrin, etc). My point of this message is to let everyone know to keep looking for something that works for you. I promise that if you keep tryng different things something WILL work. Here is a list of things I have found to work for me: Preventative: Verapamil 120mg BID Abortive: Vigorous Exercise (jumping rope works every time!!!--even at 3:00 am); Oxygen? (I'm trying next; Imitrex Nasal; Imitrex Injections; Bextra 20mg QD (helps better than anything for the dull head pain that lingers after an attack----the "reminder" that another is coming) Good luck!
Ty
USA
Thursday, May 06, 2004 at 16:09:33 (EST)

hello Everybody. I am a 52 year old male. I suffer from classical CH. Mostly at night and mainly when I lay flat. I am in the middle of my third attack now and use Oxygen. This is not a real cure but it works in stopping the pain and having that horrible feeling of helplessness when the headaches start and nothing helps. It takes ca. 10 - 15 minutes then the pain becomes numb and disappears. The headaches return after say 1.5 hours and I start taking the Oxygen again but it is a huge help. This info is not new but as I can see it is also an emotional help that there are lots of people out here who suffer the same. What can be done to cure this and not just cure the symptoms.
david Dpiggle <d.spiggle@spiggle-theis.de>
KŲln, Germany
Thursday, May 06, 2004 at 02:45:11 (EST)

Had CH (Left side face/head) from about 15 to 32 yrs (am now 46 male) as chronic daily attacks - felt I had done something wrong in a previously life - and this was the pay back. Never has any drugs that worked - tried acupuncture also (or Doctors that semeed to know much)so would take myself away - alone rocking in a type of trance, tensing neck, arm shoulder muscles intensely for approx 45 mins until relief. Attacks now episodal - Had 1 year clear then returned for 2 months - then 2- years and another 1-2 month return - last bad bout was in 1996/97 approx 1 month of Hell very intense - but finally got prescribed prendislone (spelling??)and something else (cant reacll at present) and it worked !!! Am sitting here now at 3.45 AM as they have just started to return - short and mild attacks 1-2 during day but like last bout all through the night - about 7 now on scale ...but can feel them lengthening and pain increasing - need to get prescription. Very intersting reading this site and the latest theories - seem to ring true/make sense. Best to all and very nice to see the web site - and comfort in knowing there are lots of us out there- and at there is much more info about these days -
Chris Doyle <cjadoyle@btconnect.com>
Peterborough, England
Wednesday, May 05, 2004 at 17:36:19 (EST)

I love the site, My wife found it this morning, and it's nice too know that there are other people out there that live with this demon. Have a very bad week. Spent last night at the local Hosp... Thanks for the info. Jeff Hansen
Jeff Hansen <jeffhansen@desertboilers.com>
Henderson, NV USA
Wednesday, May 05, 2004 at 16:48:54 (EST)

hi i'm new and have been suffering with cluster head achs for a while now sometimes i think i might be go crazy i can't beleive that there are so many of us out there that suffer from this awfull pain when i was reading some of thos stories i was like thats me oh my i just startrd geting them again after about two years of not having them i thought they were gone forever but i guess i was wrong they came back just about a week ago and i was sound asleep wenn it hit like a knif that was going right through my left eye the only thing i thought was oh please not again i don't want to go through this again well just thought i would add my two cent and my experence with you all good luck to all off you ch suffers
joann gibson <mommygibson4@aol.com>
arlington hts, il USA
Wednesday, May 05, 2004 at 10:56:53 (EST)

My name is Mary and I am 34.I have suffered from severe migrains since age 12.The doctors try me on different meds but they only workfor a short time.I guess my body has become so used to the pain that I dont become ill as often as I used to.Due to med alergies the drs are getting frustrated .If you take a migrain and multiply it by say 30 and you have my daily headache.
Mary Deloria <mimiq_69@yahoo.com>
Newberry, Mi USA
Monday, May 03, 2004 at 22:23:48 (EST)

I have had this terrible cluster headache since i was 14,and every year i'll experience it 2 to 3 times and every single time it'll last for about a month.So terrible that i wanna to cut of my head.So sad i had this feeling that it's gonna come back again.In this years i've almost tried everything accupunture,all kinds of medicine,injections....etc.But i find that THIS ONE KINDA WORK, use a lot of ginger together and boil with water and add some yellow sugar for 20 minutes until it taste hot,drink it b4 u go to sleep and in the morning.Hope this works for u or shorten the pain.Cheers.......
sissy hui <vitamincc11@hotmail.com>
hong kong, hong kong hong kong
Monday, May 03, 2004 at 02:14:37 (EST)

I am a 43 yo male,ch started when i was 19yo.they would come on for about 2 months at a time,with about 5 ch in 24 hours.I have tried what so far i think to be all.Been to the headach center in boston,a dentist that i saw on the today show,that tried the (sp)lydocaine in the nose.Have done the o2,all the "meds" availble.In 1985 i was put on predsisone (sp),for 3 months,taperup,tape down,and yes it worked,i ate everything in sight,felt like i could move mountains,but did'nt notice that the blood supply to my hips and shoulders was slowed way down because the arteries that supply the blood were narrowed.9 months later after my shoulder was bothering me a little..then thought i banged my hip at work,my shoulder feel apart..at work.I was standing straight and could touch my ankle bone with my middle finger!In shock, I drove my self to the hospital,where i was diag, with AVN,not only did i need to have the shattered shoulder replaced, but also my other shoulder, and a total left hip!Needless to say thing have been tough,i was only married for a few years,had a 2 yo son,and had my first replacement 3 days after the birth of my daughter.just bought a house a few months before all happened.And those -------ch still here!But what i find,and Im right there with you all with the pain,My wife has always been there, although there is nothing she can do,I try not to let the kids see an attack,and they are pain level 9,one short from taking my life! Because thats all thats left,and I dont want to go anywhere.Anyway the important thing i wanted to let everyone know about how i avaid and treat the ch..Ihave been lucky enough to get ready for them,making sure that i dont have much if anything in my stomach,avoid any alcohol,and tobacco,limit stress if possible,and try to let things not bother you as best as possible.As far as the meds go,my lifesaver is imitrex,works so fast! But the insurance co makes it very hard to get enough,but ill tell you more about that in a min...Imitrex tablets,on an empty stomach, to stop the one you know you will have,and i dont mean just take this without any symtems,at the very first HINT of a ch i take one.I also do take vicodine 500mg one in the am and 1 after supper,I know all about this kind of med from the joint replacements,but this works so much better than any thing i have tried.I have some of the imitrex nasal spray, but have had no real good success with it.The thing about the imitrex i think is fantastic is how i learned from this sight how to use one shot to take care of 4 ch! I works great for me.I fear the most the ch that come while i sleep,that the one that catches you off guard,and is too late to take any pill, and wait for it to work,this is the injection on efor sure,not that i dont get them at any time,because i do, and the injection does it.Life has been a little hard for us that suffer from these,some harder than others,how these ch can control our lives, is amazing ,they know when to hit and they affect all thos around us.I found this sight at the first ch attack of the year, started 8 weeks ago still going strong.This sight has given my hope,more than i can say,and also im some strange way,so it seems, it is somewhat of a comfort,that im not alone,thank you pbws
Paul W Smith <pbws1961@aol.com>
Windham, ME USA
Sunday, May 02, 2004 at 15:34:24 (EST)

I have only recently been diagnosed with the chronic type I have had a constant reoccuring cluster for six weeks now. It is good to know that I am not alone. Thanks for all of the helpfull info. Now maybe I can educate my doctor and get some relife. My fellow feeling goes out to all of the sufferers.
TED BILLS <jrbills@msn.com>
North Port, FL USA
Sunday, May 02, 2004 at 03:55:05 (EST)

i've had clusters for 16 years except for a two year period of grace i had cancer surgery and chemo something in the CHOP chemo held the clusters at bay for 16 months following chemo unfortunately all good things come to an end and the monster has jumped on me again worse now than ever with 6 or more daily episodes sometimes every 3 hours round the clock and they are exceeding 9+ on the kip scale regularly ive tried imotrex lidocane hot and cold treatments pressure points banging my head rocking screaming oxygen breaking fingers demerol injections nothing seems to work anymore and im getting very very desperate for relief. my father had these for 20 years and all of a sudden they quit when he was in his 60's im hoping to live long enough to see that happen until then its a daily struggle to try and function normally or what qualifies as normal anymore i dont go out except rarely am afraid to drive any distance having an episode behind the wheel of a car going down the xway in rush hour traffic is a thrill i could have lived without i am at wits end as how to cope anymore and have found nothing other than the chemo that offered any kind of relief its almost comical that something as awful as chemo provided the most long term relief ive ever had from clusters theres a plus side to having cancer treatments besides curing cancer? lol anyway i just wanted to say something about my life with this cluster boondoggle haunting me it really sucks to put it bluntly i can honestly state that i wouldnt wish this on anyone well maybe bin laden and a few more of that ilk thankyou for reading this for whatever good it does more for me than you
larry bowerman <ljackbear@aol.com>
mt morris , mi USA
Saturday, May 01, 2004 at 11:59:32 (EST)

I have a very good friend who suffers from cluster headackes. She gave me this web site so I could learn more about what she goes through evey night. All I want to do is be able to help her, try to easy her pain. This site has been so informative for me. I have a better understanding of what she is going throught now. I just wish I new what to do to stop her pain. I have printed all the info you have offered, so hopefully I will find something benificial in easing her pain. I hurt for all who endure this terribal cronic problem.
Sloan
Greensboro, N.C. USA
Friday, April 30, 2004 at 18:43:04 (EST)

Hi, my name is Andrea and I am in the midst of a bout of clusters now!!!! i am 45 and have been suffering with clusters since i was about 20! it's nice to know that i am not alone... it's soooo hard for anyone to understand what i am going through!
Andrea <andrcompagni@aol.com>
Port Charlotte, FL USA
Friday, April 30, 2004 at 16:08:02 (EST)

I am 29 years old and have suffered from cluster headaches for almost 11 years. They diagnosed all sorts from sinusitus to migraines.I eventually diagnosed myself through information sent to me by The London Migraine Trust. This is an organisation dedicated to helping all types of headache sufferers for little more than a small donation. They are closley connected and partly fund by St Bartholomews hospital in East London. I managed to get a refferal to this place and saw a rather old gent called Doctor Blau. The day of my appointment i was having a full on cluster and almost never attended the appointment. I'm glad i did. He was the first person to instantly know what was wrong with me. I was treated with oxygen... which didn@t work for me. The great old Doc decided on Verapamil (the wonder drug). Since that 2001 i have suffred very rarely and very slightly (what you and me would call a normal headache). My life has been greatly improved, which is good as i have two small Daughters to bring up. If i didn't have them i probobly wouldn't be here now. I would've given up, but we can't let it beat us. I believe that cluster sufferers are probobly amongst the strongest people in the world.
Claire Spencer <c_spencer@btconnect.com>
London, England
Friday, April 30, 2004 at 09:32:25 (EST)

I have not had a cluster migraine headache since 1985, the year my daughter was born. But for about twenty years before that I had 3 to 4 month cluster episodes every 2 years. Once I was at the world trade fair in Queens, NY and they had to call an ambulance to take me away. The pain was localized in the area of my left parietal lobe. I used ice cold showers, electric vibrators, etc. My trigger is cigarette smoke. Oddly, not marijuana smoke. It took me a year to quit cigarettes, but ever since then I am extraordinarily sensitive to cigarette smoke. I can tell from 50 feet away if someone is a smoker. I had electro-encephalography and other neurological tests. Before switching over to propranolol I would be taking 20 aspirins per day. Propranolol got me very high, and sort of worked, but even that was not all that great. I am very happy that some cities have declared smoking in public places illegal. Unfortunately, when I walk down the street I often have to cross over to get away from a cigarette smoker path. My question is whether any of you know of a scientific connection between cigarettes and cluster migraine. My message to you is that evidently it is possible for cluster migraines to go away, more or less.
Ellis <xtalv1@netropolis.net>
USA
Thursday, April 29, 2004 at 16:14:51 (EST)

I have suffered 25 years with CM. In the past 5 years they almost takin over my life. I now am on a drug called verapamil 80mg. It has changed my life. 2 pills 3 times a day. Befor imitrex i would take tylenol#3, 2 pills every 2 hrs 24/7 ,the longst was for 4 months. Hope this info can help someone! PS.About 2 years ago, my CM were so bad I had a friend come over and take my guns out of the house!
Lyon Marsden <lyonmarsden@shaw.ca>
Port Alberni, BC Canada
Thursday, April 29, 2004 at 13:01:49 (EST)

Finally! Someone else who understands! I first got a dose of these monsters when I was 20...and like clockwork, they come back every three years. I had started thinking that it coincided with El Nino, but now I'm not so sure. Anyway, I always thought I was crazy because I was afraid to go to sleep and because I would cry and rock and cry and rock...you get the picture. Thank you for being here!!
Vanessa <vanessaburch11@yahoo>
Little Elm, TX USA
Thursday, April 29, 2004 at 12:00:43 (EST)

hey...new to this site, but so glad to have found some support and lots of great info on this miserable monster wreaking chalkboard fingernails thru my brain..hope to chat with some of you soon..call me daffy or carolyn i answer to either.
carolyn <daffyswacky@excite.com>
baltimore, md USA
Thursday, April 29, 2004 at 08:31:22 (EST)

Hello ,My name is Danny I just woke from another nite of hell.This morning is different I have a nane for the beast cluster headache.I saw a show on clusterhead on Discovery channel.Wow I'm not going crazy!!That lead me to this sight well I must start my day.... Good web sight Danny :)
Daniel Pobywajlo <poby@verizon.net>
Buffalo, N.Y. USA
Thursday, April 29, 2004 at 04:40:19 (EST)

hi! my name is maria. And boy am I glad I found your website. For years I have suffered the symptoms described here and on other websites. And really could not or did not understand exactly what it was I was in fact suffering from. I have visited the doctors on several occasions with many of the symptoms described. But have never really been given an explanation as to exactly what it was I had. Now I am sure I can go back to them with this and other information on the subject of cluster headaches. And get a final diagnosis once and for all on this. As in them actually saying or confirming this is exactly what I have. My mother has also suffered with similar symptoms over the years. But thankfully not as bad or as frequent as myself. I really would like to connect with fellow sufferers. And hope you are able to help me in this. Love and Best Wishes Always, Maria.
maria langridge <maria@reincarnation.uk.com>
dorset, uk
Wednesday, April 28, 2004 at 12:51:01 (EST)

To all of us with this horrible condition. I recently tried something similar to imitrix but with much longer duration. Replax, its the first pill of any kind I've found to be effective. I became so dependant I'm now enjoying rebound headaches. But for those of you who need 6-8 hours of relief this is new and worked for me.
Rick Messina <rm7280@aol.com>
Los Angeles, CA USA
Wednesday, April 28, 2004 at 12:34:53 (EST)

i was diagnosed today 4/28/04 as having "cluster headaches" i was positive i had a brain tumor or somthing..what a relief (i guess) i have been given a strong 3 week rx of prednisone along with imitrex and the assuance i am not going to die(but that doc aint in pain) so i found this website and am happy to see i am not the only person(though it feels like it)that suffers from this..god help us all when we are being stabbed by the proverbial ice-pick
carolyn <daffyswacky@comcast.net>
baltimore, md USA
Wednesday, April 28, 2004 at 12:28:01 (EST)

I found this website after about a year of suffering. I was newly diagnosed with chronic cluster headaches. Mine start with tingling and numbness in the right side of my face and move up into my right eye the top right side of my head. I have found that a slow delibrate stretch of my back, shoulders and arms sometimes helps the pain to subside. I am currently seeing a neurologist and am on several meds for the headaches. I am so glad that I found this site - I am not alone. It's hard to explain it to your hubby and kids sometimes.
Tanya <tkduquette@famvid.com>
Marquett, MI USA
Wednesday, April 28, 2004 at 10:34:15 (EST)

I was just looking for relief... and other's that may have the same pain as I do. No one else that I know can relate to the depression and aggrevation that accompanies these episodes.
Lisa <TheBlanches@msn.com>
Minneapolis, MN USA
Tuesday, April 27, 2004 at 09:21:52 (EST)

I just found this site through one of my best friends who love to research the web. She is the best. I have been a cluster h/a sufferer for over thirteen years. I'm a 36 yr old female. I've been in a bout for about 4 weeks now and at my wits end. can't take it anymore. have tried every med out there. my two teenagers hate me sometimes but have learned to deal with it, they have grown up with my "devil", most people think I'm crazy when they see me get the "pain",. I can't sleep or should I say I'm afraid to sleep. Thank god for imitrex. Don't leave home without the needles. When I found and read all of your entries I was so amazed by how many people were out there!!! Thank god I'm not alone anymore because nobody understands me. I don't even think my doctors really understand me. I know life really sucks when it the devil comes back to haunt me,but I do have to function in a normal every day life.Now I know I have this site to turn to. I know there there are less women sufferers out there. I would welcome any feedback anyone could give me on unconventional treatments that they have tried. I have tried all kinds of meds as well as chiropactors, accupuncture, massage therepay and some herbal treatments to no avail. Thanks. Lisa B
Lisa B <lisa.bertolino@verizon.net>
Lynnfield, MA USA
Monday, April 26, 2004 at 03:32:06 (EST)

my name is eddie for some reason i cant get into message board people i help this is killing me im so down ive been having this crap long enough i have no insurance cant work im getting depressed again im hard working electrician i cant work just one person emailed me im so sick of this i guess ill give up on this site i just want advice what*&#@%&^&* to do disability or what ive had this crap 18 20 yrs im ready to blow my head off it will go away then when your head is sore from hurting i mean sore ear too im so tired of explaining this crap i had have little time trying to get on board i dont want jokes i wont relief i had one of these ch bs last night turned into a migrane today ice on my while i tried to relax where do i go emergancy room my ch is killing me mad as hell this is hurting me now people say stupid s get your eyes checked that is not it you idiot ive had this same headache since sept does anyone hear me or should i just give up
eddie <eetaylor@charter.net>
prattville, al USA
Sunday, April 25, 2004 at 21:35:06 (EST)

Hello, I have suffered cluster and migraine headaches for 20 years. I am 56. They are chronic, I go to bed fine, wake up with an excruciating stabbing pounding pain on my left side, and wish that I would die. My eye swells and my nose is stuffy and running on the left side. For years my doctor thought I had sinus problems. I finally went to an ENT doctor and he diagnosed me with Cluster Headaches. I went back to my doctor and told him. This was 1990! I tried everything that my doctor thought would work. Not until 1994 when Imitrex came to our local drugstore, I found relief. I get 9 to 19 headaches a month. I have never been in remission. My husband has been very supportive and wishes he could fix my CH problem. Men hate it when they can't fix the problem. After reading all of your emails and finding out how many people suffer from this madness (my heart goes out to all of you) we need to find a cure. Hopefully that with this web site, they can gather information on all of us and we can get more research done. Anyone that would like to email me please feel free to do so. We are a group of people who need to stay in touch so we can know the latest on going research and treatments. I just got off a 8 day round of CH. I am at my wits end, it takes so much out of me. I take the Imitrex shots if I feel like I am going to get sick to my stomach, because if I take the pill I may throw it up. When I really get scared is when I have used 2 shots in 24hrs. Then I think that I will have to wait it out until the 24th hour has arrived. Thats when I start throwing up, and my husband wants to take me to the er. They are not getting better thats for sure. I have never smoked. I did love to have a glass of wine with dinner, but I don't anymore. I haven't timed the ch's of late,(because of imitrex) but I know mine last more than 8 hrs at a time. God Bless all of you and I hope and pray that they find a cure soon. R/Kathy katherinehooks@cox.net
Kathy Hooks <katherinehooks@cox.net>
Virginia Beach, VA USA
Sunday, April 25, 2004 at 10:11:13 (EST)

Hi, well I have had my migrains for forty one years, they started when I was seven years old. My mom took me to the doctor and they told her that they would go away. I am still waiting for them to go away. I hate going to the doctor because when i tell them that I am allways with a headache they look at me as if I am a nut case. I have what a normal person calls a headache all the time, but at least three days out of the week I get my killer migrain the one that makes my eye feel like it is going to explode and like i wish I could just pull it out myself. I close my eye and I rub vikes on it and I rub it and rub it. This helps for about 10 to 15 minutes,as I rub i can hear hear and feel the tears or water that my eye is in. I take sydolil. Nothing else has helped but I can not take medication for pain because it makes my stomch feel worse, Whe i start thowing up I take cola syrup in crushed ice. this calms my tummy. I wake up with a migrain every single day. I never know if it is going to calm down or just continue to roar. My sleep is allways of extreme nightmares, I know one thing, my migrains are the one's that wake me up. Sometimes I hate my headaches not my life. I go to a lot of things with my migrains, I have too. I just go throw up and put my makeup on and make as good a day as I can. I feel for all of you who suffer like I do.
Blanca <Contigo56@hotmail.com>
USA
Saturday, April 24, 2004 at 19:44:37 (EST)

I've suffered from cluster headaches since I was about 15 years old, unlike many other sufferers, I think my headaches WERE brought on by head injury (shortly before the attacks began I was punched hard in the left cheekbone, my face swelled up like a watermelon, and the 'migranes' started soon afterwards). I think I am a chronic sufferer as there is rarely a gap of more than 7 days between my attacks. A lot of the time my headaches go away after a long walk or an hour or so of guitar playing in a dark room, however i have had a few severe attacks which have lasted 2-3 hours and reduced me to tears. During these attacks I generally tsay in bed, but am far from relaxed! I end up rolling up and down in a foetal position on my bed, groaning and clutching the left side of my face. If I catch the headaches early enough strong convetional painkillers (espec. Codeine) can be surprisingly effective, unfortunately I always forget to stock up. In fact until recently the only time I'd give my headaches much thought was when they were actually happening.
Pete Lomas
Manchester, UK
Saturday, April 24, 2004 at 13:53:30 (EST)

my name is eddie im so glad i found this site. when i was 8yrs old my family was in a bad head on collision i had a head trauma no coma that i know of but since i was 19 yrs old i get the headaches im 39 now every year in sept i get ch/earaches left side only i seem to get no relief this last 8 to 10 months out of the year im an electrician 20yrs i love my work but i find it so hard to work thru it i miss work and i hate that but these headaches last allday i wake up with it and it gets so bad it makes me feel like i hate everyone but i dont i have a good heart/ i dont drink at all just dont really like it my mother was an alcholic we lost her&my dad in 2001 i just cant get answers from any where/ive used prednisone it sucks and does not work/i use xanax with asprin it will ease off just a little bit. heart trouble in my family two sisters and dad only have 2 sisters left in my family one died 5yrs ago she had a heart transplant i had 3.one sis needs new heart now she is on the list for one.but the ch i suffer from makes me so upset i cant do anything but use icepack/i have to take so much meds i dont know what to do. should i be able to continue my job/ i find it dangerous for me i work in high place/ working with 277/480 volts is nothing to play with also i think i suffer from vertigo 20yrs of this is enough left side of my head hurts 24/7 10 months out of the year i hope someone can give me a sollutions or ideas oh yea i have only been married 2 yrs but she is my baby i feel like i put her threw to much/this ch stuff is scary my doctor dont have a clue/ what should i do i feel so bad all the time / should i be declared disabled or what im glad i found this site thank you eddie im so thankful i found this site/ please reply
eddie <eetaylor@charter.net>
prattville, AL USA
Friday, April 23, 2004 at 11:38:02 (EST)

Thanks for the info. I thought I was crazy. I even mentioned waking up with really bad one "side of the head pain" to my doctor. He was surprised!
L. McCurdy <laura.mccurdy@ryanlamontagne.com>
Canada
Friday, April 23, 2004 at 05:58:54 (EST)

i de here ooooooo
omo oba <mugu@maga.com>
USA
Thursday, April 22, 2004 at 01:27:35 (EST)

I have had headaches since I was seven years old. They were always on Tuesday afternoons. My mom took me to the doctor and they said I needed glasses. It didnt work. After a few years I started to get the headaches once a month or less. In the last year I have been getting them once or twice a week. Always the same time and always the same place. I finally was diagnosed with CH in November of 2003. I am 21 years old now. The doctor says that she doesnt understand my case. Most CH sufferers are over the age of 30, and most are male. Plus the fact that I have the chronic type. I dont understand either. They have tried a series of medication on me. Zomig, Maxalt, Imitrex, and a few others. Right now I take Cafergot. But nothing helps. I dont get my CH in the night like most. They come in the middle of the day. Mostly between 2-4pm. They dont only last for a few hours like most either. Its normally a 12 hour ordeal. Its killing me. Like I said before, I am only 21 years old, and scared that I will live with this pain for the rest of my life! I dont know if I can handle that. I am married, and my husband is so understanding, but what happens when we want to start a family? These headaches now, take so much out of me, I cant do anything. How am I suppose to have a life when this happens so often? Amber
Amber Perez <perez1223@netzero.net>
Kaneohe, HI USA
Wednesday, April 21, 2004 at 13:06:11 (EST)

I don't know if I have cluster headaches or not but they do geet real bad sometimes. I have had bad headaches for the past 15 years. Aout 5 years ago I had a brain anurysum to rupture. I don't remember any of it. Had to learn to do all kind of things again. Still have bad days, and I do have good days. I do still have headaches. They are getting worse again, I think. I am still scared that I will have another rupture. Vanderbilt says I won't.but who knows. Only one knows for sure. I am thankful I am sill alive but it is very hard for me to do alot of things. I also take care of my 14 year old daughter who has Down Syndrome. He Dad is a big help with her. But know body can help me with the things that go on in my head. Maybe if someson else could write to me about there life after an aneurysum I would feel some better.I would really apperciate it. Thank you JULIe
Julie Shults <juliemae1958@aol.com>
Lawrenceburg, TN USA
Tuesday, April 20, 2004 at 06:01:39 (EST)

my husband, is having what sounds as though they may be cluster headaches.he has had a ct scan,nothing showed up,he has been having these headaches for about 2 months now,right side off his face only ,the headache stays aways there .but, sometimes it gets really bad ,he says it feels as though his eye is going to pop out. his doctor says migraines,i have had migraines, he dont even sound like that.dr.prescribed relpax, i could use some help,and some answers,please. thank you...
t. wayne <littleravenchild@aol.com>
tn USA
Monday, April 19, 2004 at 17:05:00 (EST)

I suffer from cluster headachs i've had them for years and i haven't found anything that works.Most of the time the only thing that works is painpills. Any suggestions.?
mona wilkinson <monal25@hotmail.com>
maurepas, la USA
Monday, April 19, 2004 at 13:38:53 (EST)

I registered a few years ago, and fortunately haven't had any ch in a while, but they're back, as of about a week ago. Went to the dr. and got on prednisone, and lydocane. Seemed to help for a couple of nights, but last night... wow. anyway, thanks for welcoming me back, Kobey
kobey ratliff <kobeyratliff@aol.com>
keller, tx USA
Monday, April 19, 2004 at 06:06:29 (EST)

I am 2 months away from 50 years old. I have had clusters for over 20 years. They started out episodic and now are chronic. I have been on all type of triptans (only injectable imitrex works when I wake up from an attack or have one in the day, all other triptans never really work). I currently on verapamil and lithium carb daily but that does not work very well. I am upping my dose - not under my doctors orders. I have tried all of the epiliptic medicines and oxygen to no avail. Due to my insurance giving me 4 kits per month, I have to beg my doctors for samples. I need help!! Anyone know where I can get injections cheap and any other ideas on treatments? The neurologists (3 of them during this time period), cannot help. I am considering going to John Hopkins to see if they can. Any other ideas? Thanks - Ron
Ron Weiss <Ronw10@aol.com>
Frederick, MD USA
Sunday, April 18, 2004 at 14:14:15 (EST)

Since December 2002 I've been having headaches. The doctors diagnosed CHRONIC CLUSTER HEADACHE, but mostly I read about the not chronic form. Where can I find more info about the chronic form and other people with the chronic form? I read about an operation where they put an electrode into the Hypotalamus, has anyone have any (positive or negative experience) with it? I haven't had more then 10 days without the 'famous' headaches for allmost 1,5 year now and I've read the average cycle for a chronic patient is about 5 years! This is not an option! Till now They have been experimenting with some medication and Imitrex works at the time af the attack, but for preventive medication (surgery?) they're still looking. At the moment I'm taking the maximum on Lithium (Maniprex) and a lot of Verapamil (Lodixal), recently I've combined this with Topiramate (Topamax) but I have to quit this last one because I was getting hypertensious and ready for a breakdown after only one week(it seemed to keep away the headaches!!!!) thus anyone have any suggestions? Remember I have the CHRONIC type of CLUSTER HEADACHE. Thanks for your support.
NADIA <koen_nadia@skynet.be>
LIER, EU BELGIUM
Saturday, April 17, 2004 at 01:50:56 (EST)

I would like to hear from other people who suffer like me.I thought I was alone. No one can really understand unless you get them too.
carmela <carmela299@aol.com>
apopka, fl USA
Thursday, April 15, 2004 at 16:09:55 (EST)

Hi,to you'll
Giuliano <giuliano@teknofiniture.it>
Brescia, IT Italy
Thursday, April 15, 2004 at 01:08:30 (EST)

well am back and so am my headaches nothing new to all of you in Custer Ville. They have been not so bad but now they are .I need no help because i have been fighting then for a long long time . Like fourteen years. The doc are getting better a lot of them know about Custer headaches now .thank god. and they know about this site. So all the things you say on this site helps. No matter how small they are someone is looking at it .Like me. I spend as much time as i can reading everything i can on this site. Hoping we all can find a way to stop this madness how much can our brains take .Well in my case itís been a lot. I am 43 now and still kicking the beast every day. The cock sucking beast wont die. When i die i hope to met the beast face to face so i can kick him in the face of ever and ever .I am going to take a ten inch nail in my coffin so i can put the nail in the beast head over and over. That day going to be pay back time. ps hope to here from all of you. eggie
john stockwell <oracle1960@yahoo,com>
west townen, ma USA
Wednesday, April 14, 2004 at 16:23:52 (EST)

i have headaches and loss of vision since march 6th 2004 and i have been to all types of doctors and they cant tell me anything i hope someone can help me i just want to die and not have to go threw this pain anymore i cant watch tv or read i cant even see my grandchildren my daughter found this sight and typed everything in i am at my enda with this they have told me im crazy so i went to commite myself and when the doctor came in to talk with me he said you are not crazy something is very wrong my vision is 200 and cant find any help please help from michigan
linda <northernlights520@msn.com>
burton, mi USA
Wednesday, April 14, 2004 at 08:11:29 (EST)

What follows is a technique learned from a neurologist: I am not sure what mechanism is triggered by this method but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice. I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain. Perhaps it will help if you think of it as a slight expanding of the artery into your arm while at the same time literally trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working. This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance. I hope this technique is helpful and I wish you the best of luck Charlie
Charlie Strand <charlies@netsync.net>
Jamestown, NY USA
Tuesday, April 13, 2004 at 14:52:03 (EST)

Hello i have suffered from excruating pain on the right side for over 13 yrs. tried every drug imaginable and nothing helped until my doctor gave me some samples of a pill called Amerge within 30 min. without long lasting side effects of drowiness. Try it and let me know..
Tina Patterson <tee12090@aol.com>
Dayton, Oh USA
Tuesday, April 13, 2004 at 12:15:04 (EST)

hello everyone,cluster sufferer for last six years,tried every medication under the sun,use oxygen and imigran injections...get two bouts a year march and september.... FOUND MY CURE honest!! Beleive me I suffer really bad and like most of you I would try anything so I did. I went to a chiropractor and he works on my head every day for about a week and presto he has broken the cycles now three times, drug free but it works I have triedall the drugs, i am at the moment in a cluster and have had only one bad headache, I am still cautious and wont take any alchol,,but if this helps anyone else it would be great but perservere it does take sucessive treatments to work and is costly here in ireland but its better than the pain
constance <cseymour@iolfree.ie>
ireland, ireland
Tuesday, April 13, 2004 at 07:32:05 (EST)

hello everyone,cluster sufferer for last six years,tried every medication under the sun,use oxygen and imigran injections...get two bouts a year march and september.... FOUND MY CURE honest!! Beleive me I suffer really bad and like most of you I would try anything so I did. I went to a chiropractor and he works on my head every day for about a week and presto he has broken the cycles now three times, drug free but it works I have triedall the drugs, i am at the moment in a cluster and have had only one bad headache, I am still cautious and wont take any alchol,,but if this helps anyone else it would be great but perservere it does take sucessive treatments to work and is costly here in ireland but its better than the pain
constance <cseymour@iolfree.ie>
ireland, ireland
Tuesday, April 13, 2004 at 07:30:58 (EST)

HELP!!! I am 29 years old and I been getting this headaches since I was about 15 years old. I have tried ever drug on the market I think and none of them help. My new doctor just took me off midrin and put me on allergy medcine to see if it helps but things are not going so well. Sometimes I don't want the next day to come because I don't want to get one.Please help....
Alicia Wilson <awtriplethreat@hotmail.com>
lake wales, fl USA
Monday, April 12, 2004 at 15:42:15 (EST)

They're Back!! exactly one year to the day (12 years &counting) the next 3 weeks will be a living hell and then they'll go away--anyone find a miracle cure?? Thanks
Mark Cipoletto <mfc734@aol.com>
Roselle Park, NJ USA
Friday, April 09, 2004 at 19:54:09 (EST)

They're back! I was pretty much Demon free for almost 23 years now. I had a few now and then, mostly if I ate a trigger food unknowingly. When I was in my 20's, I had them every day, all day, 24/7, 365. It was a very rare day that I did not have to suffer. I got them to stop by getting an allergy workup and then eliminating many, many foods out of my life. I still take shots, but they came back 2 weeks ago. Now, all I eat is yoghurt, fresh meat, apples, potatoes, milk, lettuce, tomatoes, onions and peppers. That's it, no grain products at all or anything else not on the list. And I am still taking Imitrex 100's at least twice a day. Today, they switched sides. God, I hate it when that happens. I knew about this site for years now, but haven't had to come here. I am so sorry for all of us. I pray that someday a cure can be found. I will pray for you today. It's all I can do. Peace and Love. Fred
Fred <Fdewing@AOL.com>
Kent, WA USA
Friday, April 09, 2004 at 18:31:18 (EST)

Hello World, For years i have suffered and never new what is was. The right side of my head can be very painfull. I have had 9mm headaches. Anyway, the Doctors i went to said, "Cats, fans over the bed, etc.", and medicine to treat pain with no answers. None of them could ever explain why it is always in the same place, my eye tears up, and it starts with a small cough and happens at two intervals a year. This place has easied my mind and and made me feel better. This spring season of headaches is just about over ,i hope, now i may be home free until Oct. Best regards and just walk them aches off. jmd 04/9/2004
J M Davis <jmdavis2@airmail.com>
Granbury, Tx USA
Friday, April 09, 2004 at 17:06:41 (EST)

Wow. Just got back from the Doctor. I have always had migraines.... These headaches started on Monday April 5. I don't mean to be rude, but I will take a migraine anyday. I felt like the Monster was digging into my right eye with a belt sander. I just found the site... At least My CH always start at the same time of day. I guess I have something to look forward to everyday now....Thank God my insurance covers oxygen... Thanks again for this site.
Scott Gudal <gudal@sbcglobal.net>
Racine, WI USA
Friday, April 09, 2004 at 09:46:25 (EST)

i have had headachs for many years now and it seem as though they only get worrse as time gose on and the medicans do not seem to do much. they make me feel as if it is all in my head when they cant find what is is causeing them.
Roberta Mason <SwtSexyWoman@aol.com>
USA
Wednesday, April 07, 2004 at 07:37:46 (EST)

I have had cluster headaches that occur three to four times a week only after I have been asleep for over an hour and half, it is excrutiating. Only relief is warm towel and rubbing of fact. Same vein each time for 7 years. Nothing work, was on vicodine for back paid, but it did not help any bit of pain. Am a smoker, overweight, female, 58. Have not taken anything. Just met someone had surgery on face, cut open down front of face 5 years and, is now back with same pain and this time removing eye and going back into area. I will not do this.
daryl <dkreinert@msn.com>
ronkonkoma, ny USA
Tuesday, April 06, 2004 at 09:43:15 (EST)

I've seen mixed results with chiropractic and acupuncture for CH's. When we are going to see relief, a headache diary is key. Most of the time, relief is gained from concommitant headaches of neck origin for chiropractic, but most of my patients still report that much of the time they don't know what's going to even set it off.. :(
Jay A. Hafner, D.C. <jayhafner@qwest.net>
Denver, CO USA
Sunday, April 04, 2004 at 19:03:07 (EST)

Hello, I have been diagnosed with cluster headaches as well as migrines. I however am very depressed because it has been many years of suffering with unexplained constant daily pain. It has changed my life completely. I am isolated and feel as though I'm a prisoner of my own self. My mother and other family are sympatheic to my pain but nobody but me really understands the intense pain that I live daily. I have becomed disable physically and mentally. I am nothing that once was. I have recently seeked the help of na psycharist. I am most disappointment with the degrading ability of maintaining normal daily functions that I use to take for granted. I try to be what I use to but the pain doesn't allow me. I want help and I still have faith that somewhere along the line I will encounter it,if its at all possible I hope to hear something soon from you. I sometimes wonder if this is all that life has for me. I want ot get better. Please Help me.
Sophia Lewis-Rawl <sophialewis7@aol.com>
Philadelphia, PA USA
Sunday, April 04, 2004 at 14:35:13 (EST)

I have suffered from headaches for as long as I can remember. Should any of you find the doctor with the miracle cure, PLEASE let me know. I was starting to think that maybe I haven't gone to the right doctor but it sounds like we all looking for the right one. My doctors have had me on caffergot, imitrex, tylenol 3, ibuprophen, vicodan and many more that I can't even remember. From what I've read it sounds like cluster headaches may be too vauge of a term. Some of the symptoms are the same for us and others are things that more variable. I for one would gladly offer to share any of my information to anyone who is doing research to find out more about our problem. I would suggest that you keep a record of your headache. Time of day, what symptoms do you have, what helps, what makes it worse, what is the weather like, how long does the pain last, anything that you might think will be useful at your next doctors appt. Pray for a cure and for the patience to wait for it to come.
Bea Seely <seelyb@charter.net>
Tomah, WI USA
Sunday, April 04, 2004 at 10:02:55 (EST)

Hi to anyone reading this. I have suffered from 'migraine' headaches all my life. I was told several years ago that I had Horners Syndrone but was never told exactly what this was and what it meant. After reading some of your letters I am wondering if I have cluster neadaches and not migraine. I am getting more and more headaches recently and they can come on really quickly. Like another person I too get asked whether I am free from a headache or whether I have my 'usual' problem. People get very impatient with me and I find this makes the headaches worse. The more I try to control them the worse they get. I would be interested if anyone could explain the Horners Syndrone to me a bit more and perhaps give their opinion on whether I may have the cluster headaches.
Lin Gudge <agudge47@btinternet.com>
Bristol, England
Friday, April 02, 2004 at 23:33:37 (EST)

It is nice to know I am not crazy!!! I have been told all my life that is all in my "Head" ;o) imagin that. I have suffered ever since I can remember. I remember when I was just a little girl I would have to call my mom to pick me up from school because I couldnt ride the bus home because I would get sick and throw up on the bus because of my headaches. I am 28 now and they are full force and only getting worse. I can never remember not having a CH. I go to the doctor all the time and I feel like a hypocondryact (have no idea on the spelling of that) it is so bad that my 10 year old son always asks if I have a headache so he wont disterb me by asking if we can go to the park or walk the dog. I am at witts end with this. Some days I just wished the worst would happen to put me out of my misary. Like I said I am glad to know I am not the only one and I am not crazy. Good luck to all and God Bless
Crystal <razzette25@hotmail.com>
Rockvale , co USA
Friday, April 02, 2004 at 09:04:33 (EST)

My name is Dwight and I have been suffering from cluster headaches for approximately 15 years. Nonetheless, this year has clearly been my worst year. Its been so back that I'm not only depressed by I feel that people who know me think my headaches are no big deal. People think that my clusters are just headaches or migranes. It is very hear for me to explain to them that cluster are very different than migranes. My cluster's usually only last 3 months, but this year I've had them since November and they are still going strong. For the first time my headaches have changed sides. My cluster would start out on the right side as a bad headache, but then move to the left side and I'd go through all of the symtoms. First with the burning in the nose, then the stabbing in the eye and so on. The pain is so intense that I'm vomiting several time during the bout. I really am hoping that someone out there can give me some advise on what to do. I really need help, PLEASE. I don't know what to do. HELP!!! The email address that I using is my wife who is suffering because of my cluster headaches. Please offer advise on what I can use for relief. I've tried everything from Imitrex ingjections which works temporarily. I've had so many different meds, damn. As I type this note I've just finished a mini-cluster. Dwight
Dwight Brown <nramos@arbornyc.com>
New Yorik, NY USA
Friday, April 02, 2004 at 04:20:57 (EST)

Hello Folks.From what I can tell, I have been havein these clusters longer than most folks. They started at 14, episodic, ime 39 now. At the age of 22, they went into remission for 11yrs. When they returned, I had two or three, then remission for three more years. In 2000 they started a regular episodic cycles, mostly from Dec thru March, lasting approxamently 10 to 12 weeks.This month I had two m.r.i's done , c-spine and brain scan, normal results of course. nothing wrong. I've tried Maxalt, elavil,indocin, O2. The only thing that works for me is fiorinal "butalbital compound" with a really hot heating pad on the back of my neck. I see alot of you have had good luck with the Imatrex injectables,I am anxious to try it. Good luck folks, god be with you. Jody
Jody <jodymudd@charter.net>
Ft Worth , Tx USA
Thursday, April 01, 2004 at 20:18:58 (EST)

To the newbies who wonder if they have clusters... if you haven't already done so, try taking the cluster quiz on this site. It's a good way to get an idea. I would describe my clusters as this: I go to bed feeling fine, and at some point during sleep, I am woken by an excruciating stabbing pounding pain on one side of my head, most always the left. The pain runs along the top of the skull, forehead, and down just below the eye. My eye swells shut and waters up. I am unable to be still, I sit and rock back and forth, I can't hold my head, it seems to hurt worse. I hit my forhead and eye voilently as I rock, I cry, sometimes scream or grunt. My attacks always last about 30 minutes, they're gone as quickly as they arrive. When they're over, I usually fall into an exhausted sleep. I'm episodic, so without treatment, they come once a day everyday, at the very same time of day. I get a cycle once a year, usually between October and February (although this year it came in March). As I said in a recent entry, I am lucky because I take Prednisone dose packs as soon as my cycle comes, and the treatment quickly aborts the cycle. A lot of the chronic sufferers can't seem to find relief. One of the chronic clusterheads will have to decribe it for you, I'm not familiar with their ordeal. Anyway, hope this helps someone with questions. Be well!
Mandy <mandyt_78@hotmail.com>
Mt. Olive, NC USA
Thursday, April 01, 2004 at 09:23:52 (EST)

Hi I think I have cluster headaches cause I get a massive pain in the right side of my head and 3 panadiene forte dont work my head ache is way to strong and it goes in a few seconds or hours. I havnt been able to get to a doctor. But I have had about 60 of those attacks in the last 2 weeks. Could anyone give soem adivece besides see a doctor.(And I went to hospital they said see a doc but I cant get an appointment till this week)
Mark <mark_grimes@dodo.com.au>
n/a, n.s.w Australia
Thursday, April 01, 2004 at 03:33:39 (EST)

 

 

 


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