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

Below are the guestbook entries from January 2002. Thank you for your continued active involvement in this site and keep those guestbook entries coming!



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Well saw the nuero and I am trying Robaxin it seems to be working, along with the O2 which works most of the time for quick but short relief. One week and only minor pain. My nuero has an associate that came in on my visit that is also a CH. After nearly 40 years this is a relief. As far as the alcholol, don't even think about it, it is just the opposite of what is needed. I am working with some people now that have a new technique that can detect even capillary flow and 02 activity which could enhance nerve action and blood flow in MRI and a new scanning system. We are hopeful that it might bring some insight. Hang in there guys, at least now many DR's are diagnosing the beast. Dave
Dave B <>
Wednesday, June 12, 2002 at 11:36:02 (EDT)

it has been a little more than a week since my doctor began considering my situation to be after some tests,x-rays and dental opinions, we are 99% sure.I did some research when it was first mentioned and found this site to be quite helpful.the treatment and medication sections are of particular interest as my doctor has little experience with CH(I'm only his 1st near confirmed case)so we are working together.It is good to see an entire community coping with the same affliction,I feel like there is hope!so,thank you to everyone especially the sites creators for making all information wishes to all!
chad l <>
stratford, on canada
Tuesday, June 11, 2002 at 15:56:01 (EDT)

I'm 37 years old was diagnosed chronic ch 4 years ago. I thought I was going crazy[strange feeling at onset of ch then increased pain to dabilated all in about 10 minuites ]I had MRI wich was negative.tried all sorts of meds ie. lithium ,wich was a mistake for me [I climb telephone poles for a living]tried just about every other preventative with little or no success. Since finding this and other related sites I found 02 works very well for me. I was taking way to many trex injections. this site is the best thing in the world wife wants to understand but how can she, it's by far the worst pain I've ever felt, including broken bones @ back surgery.thanks for being there, keep up the GREAT work.
2late <>
Pittsburgh, Pa USA
Monday, June 10, 2002 at 13:46:55 (EDT)

Glad I found this site. I have had CH's almost 10 years. They usually occur in the spring and the fall for 4 to 6 weeks. I start taking verelan daily when they start. When I get the first "shadow" of pain I take a fiornal. If taken in time then the pain goes away quickly. Of course, if the pain wakes you up, it already too late. I take a fiornal and squeeze my head and rock on the couch for 30 to 60 minutes until gone. I usually turn on Headline news quietly in the background as a distraction. My headaches used to only be at night but have lately been late afternoon or evening. During the 4 to 6 week episode, alcohol will always bring on a headache. The only thing that has worked for me is fiornal, hand pressed against my eye and rocking on the couch until the pain goes away. My doctor just prescribed oxygen but I have yet to try it. If someone has experience with it, I would appreciate their results. Thanks.
Buzz <>
Seven Lakes, NC USA
Monday, June 10, 2002 at 09:58:43 (EDT)

Has anyone ever tried smoking marijuana to stop an attack? I believe that pot is a vasoconstrictor much like the Triptan drugs...any info out there?
Leslie <>
Detroit, MI USA
Sunday, June 09, 2002 at 19:11:00 (EDT)

I am so glad I found this site. My friend will get headaches like this that last for about 3 weeks straight. She has tried everything so far and none have worked. She just started to use a herbal remedy called Female Formula because a friend who suffers from the same thing has been using it and says it works wonderfully. She just started using it about a week ago so hopefully this will work. I will let you guys know :)
Monica <>
St. Louis, Mo USA
Sunday, June 09, 2002 at 12:56:05 (EDT)

I have had clusters for 11 years now and they seem to be increasing everytime. I have tried maxalt, prednisone and oxygen and sometimes even taken all 3, they don't seem to work. Mine come on late at night messing up my sleep patterns and they come during the day messing up my work schedule. I have become more confused and unable to continue my day to day life because the pain takes me over. My wife and 5 kids are worried sick about me. I am very happy to see this website where finally when someone says" I know what you mean" they really do. Thank you.
Saturday, June 08, 2002 at 20:22:35 (EDT)

i have had cluster headaches for 27 years now.they still drive me round the bend and they seem to be getting more painfull.but i have been told by lots of doctors that they can not do much for me.i have had loads of pills for this over the years but with no joy. i have to suffer at least half the year.i now use the imigran injections they seem to work but for how long i have been on the injections for 8 years
Saturday, June 08, 2002 at 16:04:45 (EDT)

Eureka! My technique to stop CH pain in 4 to 8 minutes. I'm in the middle a CH seizures and thought I'd check the net for any CH info and found this site. Here is my story. 1955, 23 years old in army at Ft Ord, Ca when first symptons occured. Was sent to all kinds of doctors including psychiatrists. No diagnosis. 1958 aspirin with codeine seemed to help until overcounter codeine no longer allowed. Suffered spells of 2 months each 2 years and then 1 year clear. Good thing I didn't own a gun because I thought if I shot a bullet through my temples it would create an air passage to let the pressure out and clear the pain. Over the years went to dentists, ear doctors, eye doctors, nose doctors and regular doctors to no avail. Finally, 1993, after 38 years of suffering pain of unknown cause, family doctor diagnosedas CH. No cure, but at least I had a name for it. Reading this web site, yor comments reflect mine exactly, thereby confirming the diagnosis. Through the years I've tried many drastic things to ease the pain, but nothing worked. Then in 1996 tried the following. It worked! I make a fist with one hand and put it into the palm of the other hand. I raise my elbows chest high with hands against chest. Then I press fist and palm together creating pressure. I feel pressure in my arms. I raise or lower my hands until I feel internal pressure in my head. I press for as long and as hard as I can. My arms and head start to vibrate, get warm and sweat. Favorite postion for me is on a chair or the toilet seat. I spread my legs and put elbows inside my knees with chin on hands. (Creates more pressure.) From 4 to 8 minutes pain is gone! Caution: I can't drink alcohol during the CH seizures. After 1 or 2 martinis it takes 2 to 4 times as long to kill pain. This has worked 100% for me for the last 3 cluster seizures in 96, 98 and 02. Finally, at 69, I don't dread CH so much because, so far, I can at least drastically shorten the length of pain. Good luck to all of you.
John L. Barnes <>
Walnut, Ca USA
Friday, June 07, 2002 at 12:32:26 (EDT)

I am a health reporter for CBC News in Canada, working on a report about cluster headaches and oxygen therapy. Are there any sufferers in Montreal or elsewhere in Canada I can get in toucb with? Thanks.
gerri barrer <>
Montreal, Canada
Friday, June 07, 2002 at 11:46:10 (EDT)

I would love to hear from other cluster headache suffers please.
Greg Auberson <>
Cookeville, Tn USA
Friday, June 07, 2002 at 02:13:24 (EDT)

Russ has suffered from ch for 13 years. We didn't know what they were for sure untill we went to this site. We're relieved and depressed all at the same time. Russ was not happy to see that a cure is not expected. Russ has chronic headaches.He hasn't had any remission for a very long time. When we kept a diary to show a doctor he had 114 headaches in 3 weeks,almost all of them are at night. They usually last about 30 minutes. We are just getting started with trying medications. First is neurontin. We will continue to monitor this site for help, because his life is a living hell. Has anyone ever gotten disability because of the ch's?He can't have a real job, so we do our best with self employment. I can't tell you how much this site means to both of us.Now if we can get the doctors at the V.A. to listen to us maybe he can get at least a short remission or at the very least decrease the frequency and intensity.We'll also try some naturalpathic drugs too. If we find anything we'll let everyone know. Thanks
Christy & russ Rogers <>
Phillipsville, Ca. USA
Thursday, June 06, 2002 at 17:31:44 (EDT)

I am experiencing cluster headaches for about 10 years now. First the frequency was 2 to 3 weeks every 2 years, but the last 3 times it was about 4 weeks every 1.5 year. A lot of people just don't understand and think it is just a regular headache. Until I first visit this site 1.5 year ago, I was really feeling alone with my pain (even though people close to me were trying to help. It was such a releave to find this site: not a physical releave, the suffer is still intense (I am in a cluster period now), but psychologically it is. The pain: intense, like a knitting needle going in the middle of my eye... The feeling I am in a deep fog, and alone in the world with the torture (especially when it is the middle of the night).... The urge of having someone taking care of me, taking decisions for me and finding solutions for me as if I was 2 years old, but at the same time wanting to left alone and have no witness to the crazy things I do during a crises (walking miles in the living room, rocking myself, bumping my head on the wall, pulling my hair, crying like a baby....) I want to be able to live a normal life, and not knowing that there will be "another time" that will put my life on hold for weeks.... I want to be able to have children without endangering the pregnancy and take care of them... And it is not that obvious with that condition! The specialists here in holland are saying that they don't know where it comes from, and that therefore there is little they can do: BULLSHIT! If there is a problem there is a cause, and if there is a cause there is a solution!!! I will try the water experiment proposed on the site, hoping that will help beter than a bunch of so far unefficient specialists. Thanks for this site! God bless you all and good luck
Elina <>
Hoorn, Holland
Thursday, June 06, 2002 at 06:55:43 (EDT)

I get the headaches for 1 month intervals around both october and may at 12:30 am on the right side of the head. As many of you know, the pain is unbearable. I am relieved to have found this site, for finally i actually know what I have been suffering from for the last 10 years.
mike <>
buffalo, ny USA
Thursday, June 06, 2002 at 01:38:48 (EDT)

As I started suffering with another cluster attack, I thought I'd type in cluster headaches and read it away...anyway, I wound up here.....It's so sad to read about so much pain that others have no idea what we experience.....I'm an ongoing sufferer for 10 years now...It feels like it has aged me so much...I suffer with all the symptoms of cluster headaches....I was diagonosed with osteophytes build up at the top of the neck...The first vertabrae.....The nerve rubs against the osteophytes and triggers my clusters..(I guess).....I've had epideral shots to control the nerve rubbing but not always do they block the pain.....In fact, I had epideral shots this morning and am now having a cluster attach coming on.. What a waste of money that was.....Just a mention: When I do feel a cluster attach coming on, I smear "MINERAL ICE" all over the effected area....Sometimes this mellows the pain until i can get tylenol or something in me.which doesn't help.....and react fast enough....I use a full jar of mineral ice a week...always walking around with a blue face from the color of the mineral ice......Just thought I'd share this...Cluster is coming on too strong, have to go....
terry smith <>
wiley ford, wv USA
Wednesday, June 05, 2002 at 18:34:39 (EDT)

As I type this, I am at the end of the first week of a cluster cycle. Luckily, on the pain intensity scale, this cycle is not nearly as bad as some I've had. Sometimes, an attack is so painful, it affects my speech. I've been told that's because the pain literally exhausts my body in a short period of time. It's embarrassing to have a weak, cracking voice and trouble pronouncing words during/after an episode. Can anyone relate to this? The speech problem is happening more often with cluster attacks. My boss sat down with me after an episode and she seemed to understand both my embarrassment and the exhaustion. A funny thing: I have an O.U.C.H. t-shirt I purchased a yr. ago. I've worn it to the mall, out to dinner, etc. Not one person has inquired as to what a Cluster Headache is. Not one person has walked up to me to say they are a sufferer, as well. Is our form of headache really that rare?? My parents always knew the pain wasn't in my head (no pun intended). However, the family doctor sent us away from his office when I was 15 saying he could send me out for a lot of tests that probably wouldn't show anything, just cost us a lot of money. My first cluster experience occurred while I was in the shower at the age of 9. I will never forget sitting on the floor squeezing my head between my hands. There were a lot of tears mixed in with the water flowing down the drain. I went undiagnosed from the age of 9 until 32. The ER doctor couldn't believe I had dealt with the tremendous pain without medication all those years. It took a close call during an attack while driving to get me into the ER. I thank the Lord Dr. Beaverstadt was in the ER that day. Apparently, no one else around here knows what clusters are.
Jo <>
Fort Wayne, IN USA
Saturday, June 01, 2002 at 21:46:56 (EDT)

Started my head aches in my 20s. Thirty years of bad spring times.
Kevin Koprivica <>
Wood River, Il USA
Thursday, May 30, 2002 at 21:24:24 (EDT)

This is my 2nd day visiting this website. I do not have cluster headaches, but my boyfriend has had them for 10 years. We plan on getting married soon. I am soon to be 40 and he is soon to be 43. I am trying to find out as much as I can. I have not seen him have one of the worst ones, but I have seen him have them and I feel so helpless. I am trying to find anything that might help him!
Melissa Hartsfield <>
Mesquite, TX USA
Thursday, May 30, 2002 at 17:30:30 (EDT)

This episodic episode has been gone for 5 years. Oh yes! its back!!! Years ago-I had taken a 15 day antibiotic with 15 day sinus medication and they went away.Nothing is working now!!!Just puchase migrane medication -will try this
rosemarie <>
brooklyn, ny USA
Wednesday, May 29, 2002 at 10:24:36 (EDT)

My mother's side of the family all suffer(ed) from what many dif. Dr. call cluster, cronic, migraine (& other guesses). Mine started at age 41 and am now 43. Some took them to the grave. Other family members stoped (for good) as randomly as they started. 1 10 mg. oxy will get me thru the day. Other times (aprox.[2] 4-5 days killer) headaches about disable me. I have gone 45 + days w/o med.on Dr. advice, for fear of rebound or dependantcy issues. Nothing changed as far as severity and frequency but the first few days I was more "yuck". To stop taking med., all togeather, is not so hard but 3 cat s. & MRI's did not show any abnormalities other than the usual. I have increased exercise, decreased caffine & most other diet sug. No change. I tried about all of the non-narcartic pain blockers on the market, including all natural, w/o change. 15 days to enter system, 30 - 45 day supply, liver testing, 15 - 20 days to leave system (w/o oxy or hydro.) left me little more than many, many suffering days. I own a business and yes, it is a fast paced office with employees/contractors feeling high stress. Me, I have been doing the same for years and feel very little stress. I have tried tapes, techniques galore and no change. My feeling is that someday this cond. may leave as quickly as it started. I am by no means disabled when the worst h/a come because of continous pain leads to dealing with it and life goes on. I will be very happy when, and if, they do stop occuring. A word of caution: While thousands of people do abuse pain control med. others, like myself with a growing business, family,etc. are very cautious to take less than perscribed (fear of getting hooked, so many stories)bbbut had nuroligist file a report indicating saame but put his 2 cents worth in for a slight dependency. Some (at least the one I saw) speccialists want to prove more to themselfs (treat w/o med even tho my med. records showed a control method)and may affect your PCP's treatment guidelines. I know. This happened to me so I stopped for 6 mo. w/o change so he reperscribed same but wanted to inbrease strenght (guilt?). I would not let him do so and continue to make a 1 mo. supply last 2 mo along w/ a lot of water, juice and asprine. Well, that is about it other than asking you to pardon my spelling as I have not been to bed yet (another bad one, that si why I am searching sites). Blood tests, back adj., alergies, vessels & lots of other lab work did not show anything unusual. Last, family members on mothers side live in vaarious states N. to south. I hope this may help some of you or at least let you know others out there suffer the same. if yours are more painful .... bless you! Bobby in NC
Bobby Rourke <>
concord, nc USA
Sunday, May 26, 2002 at 07:34:41 (EDT)

This is a great site. I had begun researching CH's only a few years ago starting at my local library. Actually, nowbody had previously called them that to me despite years of episodic visits to my GP and any other doctors on call but the description I found in headache books I saw decribed my symptoms ot a "t". I have had good sucess with Imigrain injections for the past few years but when I started them they cost me $35 a jab. BUT they do seem to change the form of the cluster if they continue past 3-4 weeks. Does anyone else notice that - the longer I use them in an episode - the less effective they seem by the end of the bout! ? Does anyone else in New Zealand have cluster headaches? and for the first time on tv I heard CH's referred to - on a British comedy show"Black Books".
Awhina <>
New Zealand
Sunday, May 26, 2002 at 06:02:42 (EDT)

46 yr. old ,been a headache weirdo since 19 ,don't know how I've made it this long . People have no IDEA ! I'm chronic sufferer , all year round 2 to 5 times a day (night). So far all dr. (neuro) seem less knowedgable(?)than me.GOD it's so embarasing ! Nice to know I am not the only one ,Not that I would wish this on anyone . Can't take much more , I seem to be getting weaker not stronger.This SUCKS
Mark Brinson <>
CastleHayne, NC USA
Saturday, May 25, 2002 at 22:10:22 (EDT)

Hey,everyone.Just want to say that I have cluster headaches,chronic migrain headaches,and the biggest trigger is Occipital Neuralgia and Allergies to foods,inside and outside allergies.I have suffered for atleast 20 years and the older I became-the worse it became.EVERY DAY for years.I just spent the last year bed ridden.Sometimes I did not think I could take the pain anymore.I have gone through so many doctors who don't understand or think you just want drugs, when ALL YOU WANT is to STOP HURTING!!!My faith in God kept me strong and I knew he would not let me face my trials in life alone.My prayers were answered.I finally found a doctor who suffered the same as me and he seriously tried to help.He sent me to Duke Medical Center in NC to see a headache pain specialist.I had to stop all pain meds.....not even a single Tylonal(which would not have helped anyway)and have been given two nerve blocks in the back of my head on each side.I am not out of the woods yet,but I do see some hope.I take welbutrin SR,Buspar,Allegra d,rhinocort aqua nasal spray,200mg of B2 twice a day, and 700mg of magnesium a day.I know the eye starting to mess up signaling the cluster coming and then the pain that you want to stick an ice pick through your head to relieve the pressure.I know the horrible migrains where I can't hardly walk ,talk,think,see and nearly black out.I also know the Occipital Neuralgia itself that hurts so bad that your hair hurts to touch it.I feel for all of you and hope everyone of you can find a kind and understanding doctor who will care about what you are going through.It may be a good idea to check and see if you have Occipital Neuralgia contributing to the clusters.I am giving the nerve blocks a shot,so I will try to let you know if it helps.When your feeling hopeless...look up..there is someone who believes in you.My prayers and thoughts to all...goodnight.
SW <>
Friday, May 24, 2002 at 22:18:53 (EDT)

Thanks to all for the site, after 40 yrs. some that understand. It is hard to even have anything to give an MD to work from. I have found coffee with cream and sugar along with aspirin or Ibprofin the most effective short term relief, this is now recognized by the Chicago Headache clinic as well. Thanks again for people that understand da beast.
Dave Barbour <>
Dewey, AZ USA
Friday, May 24, 2002 at 14:41:58 (EDT)

i hope everybody is doing good today dont understand the subject much from po box 390 zip code 10044 if anybody wants to talk lets talk
mr oneill <>
rosevelit iland, ny USA
Friday, May 24, 2002 at 12:10:31 (EDT)

I started college this year, and along with my new journey came these horrible intense headaches. I went to Emergency two times this year because they got that bad. I would be afraid to go to bed because I knew they would come. They did every kind of test you can think of on me in the hospital...spinal tap, bone marrow biopsy, EEG, CT, MRI, etc...and could NOT find any answers for me. Since then I have suffered, like most of you...everyone had an answer. It was either stress, or just a normal other words, no one believed me but a few people. The past few days I thought I was going crazy too...I started to think that maybe I was imaginging this, and then I got some information about cluster headaches, and everything clicked into place. Finding this website has already done so much for me and it has only been 5 minutes. I thought I was being punished with this pain...and I really never knew that there were so many others out there...I don't feel as alone now. Thank you...never hesitate to email me either :)
Sarra <>
Ann Arbor, MI USA
Thursday, May 23, 2002 at 19:17:01 (EDT)

i've been suffering with these "headaches" for 10 years now . they happen every year, at minimum, in the spring and some times in the fall. i've been to doctors but most either don't believe i have them or worse they try to rule them out by giving me everything under the sun for regular headaches. none of it ever even touches them. i am in a cluster right now and am exhausted. i don't see anymore doctors. my weapon of choice is an ice pack and fan or air conditioning with excedrin and lots of caffeine. this whole site is really helpful, mostly because it's nice to know i'm not alone with these demons. good luck all and happy in-be- tween times.
bryan rains <>
toledo, oh USA
Thursday, May 23, 2002 at 18:59:21 (EDT)

why do guys have to me so confusing they say girls r bad! im about to break right down theres blaine jon brad jordan and eric baline eric and jon like me jordan and i like each other but cant be together bacause he lives out of town. jon i think only wants pieces i mean you give a girl boobs and every guy wants her. blaine is a total sweetie but i just want to be friends, we tried it befor and it dident work why would it work now. eric and i work together and i only want to be friends hes like 3 or 4 years older than me and at this age it matters. !!!!!!!!!!!!!!!I hate boys !!!i hate boys!!! i hate boys!!!!!!!!!!!!!!!!!!!!!
Thursday, May 23, 2002 at 18:39:28 (EDT)

I've had cluster headaches since I was 15 and I am 46 now. They come between November and May. About 75% of those 31 years have been headache years. Head banging, head squeezing, hot and cold showers, ice and heating pads, excedrine until I'm sick, dristane and afrin nose sprays until I burn my sinuses, push on the eye until you think you are going to smash it, use the telephone for the only thing it's useful as, a hammer, jump up and down in some manic exercise routine, stick my finger down my throat and puke, cry, moan and scream type headaches. I tried everything I could years ago and gave up on doctors who kept looking for epilepsy or some other exotic disease (no offense to epileptics or anybody else). I gave up on a cure or even outside help years ago. I learned that vomiting helped somewhat to end a headache. My fiance witnessed a mild headache and got on the web looking for understanding? I'm not sure that was her intent, to understand cluster headaches, but she is pretty smart and figured it out without me telling her they were clusters. She got some understanding but I don't think it's possible to share the idea of the pain with a non-sufferer. Knowing that a sufferer bangs his/her head is a gross understatement of the pain that we all have learned to live with. I thank God for the years I didn't get a headache. Then they come back, they always do, just when you believe they are gone for good. BUT, this year they have been relatively mild, amazingly mild, 15 - 20 minutes of head sqeezing and then they fade away. They are more frequent than in the past BUT MILD. The difference could be attributable to being on an SSRI. Does anybody have a similar experience? Or maybe I'm just getting too damn old and those veins in my head are getting clogged with cholesteral from the ton of butter I consume annually.
Paul B. MacInnis <>
Houston, TX USA
Wednesday, May 22, 2002 at 16:38:51 (EDT)

OK, Let's try this again. Apparently I hit the wrong button. I have had CH's for over 20 years, always seems like a seasonal thing, coming in the fall or spring for about 3 weeks. I always suspected they were related to alergies, which I also suffer from (an active Beta nervous system). I am currently about a week into a cycle, but in the past 3 days just to try something different (an experiment, if you will) I have been taking regular doses of Benadryl, or whatever other antihystimines we had in the cupboard. I've only had one during that time, but that was last night when I failed to take a pill on schedule. I think there is something to this, and I would like to hear from anyone else who believes these things are tied to alergetic reactions or symptoms, or anyone else who has tried this method to reduce the frequency during a cycle. Appreciate any reponse. Hang in there, we'll get it figured out one of these days.
Glenn Abele <>
Bellvue, CO USA
Wednesday, May 22, 2002 at 10:55:05 (EDT)

Hi Folks,
Glenn Abele <>
Bellvue, CO USA
Wednesday, May 22, 2002 at 10:47:38 (EDT)

I'm not sure what to write, most of you guys are sufferers for a long time, i myself have just been diagnosed last week with chronic cluster headaches. In the last six months i have lost everything!! My job.. I was an officer in the merchant navy, my girlfriend who got so scared she used to panic and worry about me until it got to much, of her own, most of my friends as well! Its not thier fault but they think one of my headaches is like one of their hangovers or maybe a flu headache. To tell the truth, one year ago, if someone had told me they were a cluster headache sufferer i wouldn't have known what they were going on about. To cut a long story short without going into what drugs do and don't work for me and anyone else. How does anyone with cluster headaches keep down a job. And what companys can i work for that understand!
Wednesday, May 22, 2002 at 00:18:28 (EDT)

It is so comforting to know that someone out there knows that I am not crazy and understands how much pain I am in. Some days you just feel like giving up cause you think there isn't a soul out there who understands or a soul out there that can help you. Just a week and a half ago I began having cluster headaches again after not having them for three years. I started having headaches as a freshman in high school and had them from February to June 3,4,5 sometimes 6 times a continued on that same cycle for four years. At that time I lived in California, moved to Arizona last year and on May 9th, 2002, the demon returned to punish me. On the Kip scale I usually have an 8-10 cluster headache, banging my head, pounding on it, moaning, squeezing stress balls, anything to take my mind off of the pain. I know my boyfriend and family worry and struggle over watching me in pain...there is nothing that they can do. Thanks to everyone for sharing all their stories. I am very happy to have found you all.
Julie <>
Phoenix, AZ USA
Monday, May 20, 2002 at 17:47:27 (EDT)

Very informative regarding Cluster Headaches. I suppose I am also a subject `, having had similar symptoms for the past approximately 12 yrs. I recently had a remission period of over 4 yrs--but now they are back, although so far not as severe--always around the left eye-temple area. Any meaningful advice will be appreciated very much.
Raymond E. Ellefritz <>
San Antonio, Tx USA
Monday, May 20, 2002 at 13:19:13 (EDT)

This website has a lot of helpful information on it. It's nice to know that there are others out there who understand the pain.
Melina Holland <>
Alpharetta, GA USA
Monday, May 20, 2002 at 09:30:28 (EDT)

Great web site. I've learned a lot from it. I see that there are others who have had long intervals between episodes. I had the headaches since college but really didn't think too much of it until I had my first real long lasting painful episode 5 years ago. I was finally treated with Prednisone, which worked. I hadn't had another cluster headache until this last week. I thought I was "cured". Needless to say, I'm on my way back to the doctor for more Prednisone.
Kurt Schieding <>
Canton, MI USA
Saturday, May 18, 2002 at 14:05:34 (EDT)

It's nice to know that I'm not alone in my pain. I have had cluster headaches for ten years but never knew what they were until 5 years ago. Mine do not bother me all the time, I hadn't had any for 3 years and they started again within the last 3 weeks. I'm back on medication now and am better. I didn't realize they would come back after that long a time. I'm interested in hearing from others that can give me insight into my illness. Naylon
Naylon Sims <>
Bellville, TX USA
Friday, May 17, 2002 at 17:49:02 (EDT)

Iam very happy thatI found this site.
cbolony <>
port chester, ny USA
Thursday, May 16, 2002 at 19:30:30 (EDT)

I just started another session 5 days ago. I'm trying chiropractic neck adjustments, but I only had one day without a headache.
Paul Raine <>
Troy, MI USA
Thursday, May 16, 2002 at 18:05:06 (EDT)

Hi I am new to the site and have suffered from clusters for 27 years. I began when I was 12. I am episodic and am continually amazed at how freeky the cycle is. It seems to have an existence in me all of its own. Imitrx has given me back my life during the cycles but like all others I feel as though I am a slave to the cost and availability. I am fortunate (more than most) that I was diagnosed early and it only took me 7 years or so to find a doc who would treat a female as a cluster patient. I find my diet is huge in controlling the severity and frequency during a cycle. (that is only controlling the pain level and not getting rid of the headaches themselves.) I wonder if they every quit or if I will be in a nursing home with headaches someday? tj
Colorado Springs, CO USA
Thursday, May 16, 2002 at 01:03:56 (EDT)

Very Very Interesting. I was diagnosed with Trigeminal Neuralgia over 2-years ago. Have had two brain surgeries to try and stop the pain and one gamma knife. Decided to fire all my doctors. Found a new neurologist that said I have Tic/Cluster Syndrome. So 2-years of research for TN has now been put aside for some immediate research on Cluster Headaches. Hate to say it, "Glad there are others with cluster." Not because I am a cruel person but we all need to know where to go to talk to others about the pain. I think my wife is ready to kill me, new drugs, new resource, new problems, etc. Oh well, the endless search for a cure goes on.........
Jeff Triplett <>
Orlando, FL USA
Wednesday, May 15, 2002 at 18:03:43 (EDT)

I can't believe I finally found a place understands what I am going through. I know my doctor and my boyfriend tries to help but they just don't understand the pain I am in when these things hit. I can't believe how bad a I feel right now and when I found you site, it brought me to tears. I know that the cluster headaches will go away again, but it's never soon enough. It feels good to know that others understand the pain and the feelings you go through when you have these things. Thanks.
Christine <>
Columbus, Oh USA
Wednesday, May 15, 2002 at 16:28:48 (EDT)

i've been having ch's since i was in college(1995). it seems i've tried everything under the sun to get rid of these "monsters".sometimes i feel sort of like a lab animal that the dr.'s use to try diferent meds, so i've started my own testing. my dad heard about a lady in our town who had ch's and she started taking bee pollen(all natural) so he went to the health food store and got me some. at present i'm takin a combination of verapimil & neurontin.(constipation sucks!!!) i started taking the bee pollen by itself and have stopped taking all of the other prescription drugs all together. "knock on wood" it's been 2 weeks without a headache. maybe this information will be helpfull to some body else. it's worth a shot don't you think.
Wednesday, May 15, 2002 at 12:13:06 (EDT)

I am takeing Elival 50mg twice a day and periactin 4mg twice a day.This generally keeps them under controll I have been in remission for three years untill the present.I started having bouts eight days ago I have found that placing a pot of boiling salt water on the stove and breathing the steam by placeing your head over the pot will stop a cluster all most as fast as a shot of Imitrex 6mg.I have been having cluster headaches sence 1980 at that time I went to John Stirling Meyers,MD.Cerebrovascular research Laboratories 2002 holcombe Blvd.-VAMC-151a Building 110-Room 225 Houston ,Texas 77030.I now see Dr David K Garriott M.D. pc Associated Neurologists of Kingsport West Park Professional Bldg.Suite 3a. 423-247-5553.I sure hope this will help some I use Imitrex if pain is bad enough.Larry B.
Larry Bishop <lbishop2CHARTERTN.NET>
Tuesday, May 14, 2002 at 15:11:43 (EDT)

I have been in the dark for years about my headaches. Every time I had a "cycle" I would go to the doctor, he would see the symptom of nasal congestion and blame allergies or sinuses. I have tried all kinds of stuff to address these things, and the cycle would end and the doctor would think that the problem had been addressed. I gave up. I have just been "toughing it out". I get up and go downstairs and breathe steam for hours because I was so convinced I had chronis sinus problems. I wouldn't tell other people about it because I didn't want to sound like a whiner, but it stinks waking up in the middle of the night with pain behind your eye so bad that it feels like something in there is trying to rip it right out of your skull. I would just sit there and cry, tell my wife I wished I would die, and every once in a while think about accelerating the process. Then the cycle would end and I would be OK for a few months at a clip. This last bout was too much. I went to the doctor (a different one from before) and he said right away that I was having cluster headaches. He gave me an imitrex sample (which I have already used) and it seems to have shortened the duration of my episode. I have to go see the neurologist, and until then I am going to be devouring the valuable info on this site so I can go prepared. It is good to finally know what this is. God Bless, John
John DeVito <>
Tuesday, May 14, 2002 at 14:26:00 (EDT)

I have suffered from chronic cluster headaches for over twenty years. I have seen specialists in the field of headache control and have tried and used every type of medicine for the headaches. By chronic I mean 3 to 5 a day. These occur in the afternoon, if I should take a nap, but ususally in the early hours of the morning when i am sleeping. I used Sansert and oxygen all the time. I use, on the average, one M tank of oxygen every ten days and this is delivered by a pressure mask. My headaches usually are on a 4 to 5 on a scale of 10. In the last 20 years I have had them up to a 9 and at this level one thinkgs of taking their life. What I am writing about is that I have not had a cluster headache nor even close to one in almost 4 months, that is right, four months. Can you imagine not having to use oxygen, not having to wake at night to grab the sansert, nasal xylocaine nose drops, not run to the kitchen to get an ice pack, not walk outside in the freezing cold to change your body temp all in hopes that you might bring about some relief? WEll, chronic , and I mean chronic cluster headache sufferers, I want to share with you something I have found that might change your whole life. I am not kidding. I am a physician and i do not kid. I am giving out this infomation to you because I know what you suffer. I send it by this modality rather than write an article about it because it would take too much time to get it in print and too much time getting the information to you. I have backed into a treatment for you. I was placed on Robaxin, methocarbimol, for back pain and back spasms. I take it three times a day, at 750 mg in the morning, at about 1 pm and in the early evening. I have not had a cluster headache since, not in over 4 months. Robaxin, or its generic methocarbimol, is an old drug that is used for muscle spasm. The mode of action of this drug is not known but it does not act on muscles nor nerves. It acts centerally in the brain. How this medication works, I do not know but it is safe, used for years, and is very cheap. I suggest to you that you try it. Use it all the time as I have done and see whether you headaches will not come back. I have not stopped it. When you ask your doctor for the medication and tell him what it is for, he will think you crazy, but my friends, try it and see. The medication is not addicting, not an narcotic but must be written for by your doctor. Take it for just one week and see if it gives you the relief I have found for the first time in over twenty years. Robaxin, Methocarbimol (750 mg) three times a day. My email address is posted so get back to me. I am not a representative of the company that produces the drug. I have no vested interest in the medication and receive no monitary reward. My reward will be helping people who suffer from cluster headaches. I hope you all have a better life. One more thing, the medication may cause slight constipation, but who cares if you have no more headaches. Donald D. Douglas M.D. F.A.C.P.
Donald D Douglas M.D. <>
Lewisburg, Pa USA
Tuesday, May 14, 2002 at 13:51:12 (EDT)

Love To Talk About Our Problems
Jim Warriner <>
Dover, uk
Monday, May 13, 2002 at 15:40:07 (EDT)

Within the last month I have had this strange feeling in the left side of my head. I hopped on some health links to read up on headaches which I do often. I suffer from chronic migraines, but they are always on the right side of my head and very distinct. These new feelings are mild in comparrison, but befuddling and freaky nonetheless. They are dull aches...almost like a cloudy slight throb that makes just the side of my head feel surreal (this is the left side). It's behind the eye closest to the temple is where it's most concentrated. Then it runs into my temple and again I feel it at the base of my skull and down the side of my neck some. When it hurts, which is difficult to say that it actually hurts, it's more annoying and discomforting more then anything, I feel off...a little restless (I do a lot of shifting) and I breath short (as if having a panic attack almost). I can function normally, but I don't want to. Sometimes there are some tingles in my cheek bone, my eyelid feels heavy, and there are little quick pains in the back of my head (but, again, compared to my migraines, this pain is not severe). My head feels stuffy and foggy and I closing that eye just makes me feel irritated. I have blurry vision outside of the left jaw feels strange (like chewing on tin foil, or something bothersome) and I can't hear or feel these little pops in my temple and my neck from time to time...again, just slight. After reading through this site I am now frightened that this is going to proceed to get worse and I am going to end up pacing and banging my head. Do these sound like the correct symptoms for someone just starting out with Cluster Headaches? I get them a couple times a day, around the same time, although...they never fully seem to go away. I get little stints of relief, but I can feel them lurking around the corner, haunting me and threatening to come back. I thought it was Sinus related b/c it just started now with Spring and I am a native Floridian just beginning in a state with seasons. Help!
Heather Dooley <>
Dayton, OH USA
Monday, May 13, 2002 at 12:51:14 (EDT)

I have suffered from cluster headachs for 25 or so years. Mine are eposodic and usually occure in the fall and spring. This last cycle (April 17, 2002 to Present) has been one of the worst I have experienced. One thing that bothers me is that my doctor dosen't seem to understand the pain I am in. I am also tired of getting the same ineffective treatment over and over again. Even when I tell him that it isan't working and I need something else, there response seems to be the same. Hopefully this site will give me some insight and help in my battle with the demon.
Chuck Nyquist <>
longwood, fl USA
Monday, May 13, 2002 at 09:51:12 (EDT)

Thankyou for being here, I dont know how I could support my boyfriend without the information that you have supplied on this site. I wanted to let you all know two treatments that have been very successful for him. The first one, which due to other medical problems he can no longer use was acupuncture at the back of the neck with electrodes attatched, he was in remission for over 18 months. Now we have found another using pressure points in his hands near where the thumb joins the hand, it took a little while to first find it, but so far we have been able to stop them for 4 days now and hopefully it will continue. Were keeping our fingers crossed.
Julie <>
Perth, WA Australia
Monday, May 13, 2002 at 03:30:45 (EDT)

Hello fellow cluster headache sufferers. I am just getting home after a two week stay in Al, I have been on my usual drip of histamine and it did not work . it did tame, the clusters down some for now but after the 21 st bag of histamine I had to have a turbinate reduction so it only made matters worse. I had my first experience with imetrex injection while in the hospital this time. I thought I was having the big one. heart wise. If anyone has the latest in injections feel free to contact me as I have been all over the world . for this condition I have intractible chronic cluster refractive to all meds, The only thing that will knock it away from me is a instant shot (all comments are greatly welcome ) thanks for the excellent. And does any one have info on this surgical procedure that I am always being told that im not a good candidate for on have any info on the site or technique ?
Bill Phipps <>
Gadsden, Alabama USA
Monday, May 13, 2002 at 01:00:23 (EDT)

hi my name is dennis but most people call me den, ive been suffering from cluster headaches for about four years now but they seem to be getting progresivly worse, it starts very subtely with a preassure at my temple, then the pain begins to build behind the left eye, then moves on from the temple down to the base of my neck, then muscle spasm's start in top and bottom jaw line, breathing goes very shallow, then left side of face droop's as if in a stroke, and left eye streams with water constantly, at this stage it is impossible for me to move, because every movement causes more excrutiating pain, a quarter way through the attack the pain seams to shift and subside slightly, but only for a few a moments, as it turns its attentions to the muscles in my jaw, which seam to freeze solid and i have to make a concious effort to open my mouth, even very slightly to free it, but as soon as i do this the pain shifts back to its original position, after this phase it gangs up both jaw neck and head, these attacks can last anything between half an hour up to 3 hours, and are very dabilitating, they leave me frightened, frustrated and exhausted and ashamed, and would appreciate any help or advice you can give. thank you Den
dennis m telford <>
miltonkeynes, bucks uk
Sunday, May 12, 2002 at 18:34:47 (EDT)

This is the best site on CHs on the web.I have been getting these headaches for the past 12 years and when thay come thay last for around 6-8 months i have been to dozens of doctors and nothing works.The only medacations that has a minor effect on the headache is vicodine ES but that only works for a few days.I get around 6-8 a day the bad one are at night around a hour after i go to sleep the pounding behind my left eye is so bad that my eye close's and i have a hard time just to walk outside to sit and put the ice pack on my head.when i check my blood pressure during the peak of the headache its around 118/58 and the pulse is 38 is this normal??.Also if i put my head between my legs and strain myself to have the blood to go to my head this releives the pain a little but then it comes back in 5 minutes.This is one thing i have noticed when the headache is really bad my left eye and the left nasel passage does not drain on minor headaches thay do.So when i have really bad one's i force myself to vomit i know this sound sick but if I'am able to my left eye and nose runs and the pain is gone in a few minutes.My question is this do any of you out there have the same symptons.What do you recomend I have had 2 MRI's Blood test also I was in a car accident back in 1990 and had head injury on my upper left side.Please email me if you have any Input Also I have 1 Question Why is the medication for these headaches so dam costly in the past week i have bought imitrex 100mg sumatriptan 9 pills for 157.89 and maxalt for 86.47 for 6 10mg pills and it only lasted for 4 days there has to be a better way to treat these headaches.I need to end now I feel one coming on my left eye is pounding If i had only 1 wish I would wish that cluster headaches never extisted
Austin <>
woodland hills, Ca USA
Sunday, May 12, 2002 at 02:36:48 (EDT)

My last CH was eighteen months ago. The longest remission time before this was one year. I know that any day I can experience another one, two or three. Some days I have hints that one may break through, but fortunately I evade it. I have had the Ch's for 17 years, and they commonly occur in the spring & fall. I dread those times of the year, and often wish for very hot or very cold weather because I don't seem to experience any in that kind of weather. It's hard, but I have to accept the fact I may have them the rest of my life. I have tried the many prescription drugs I have seen posted on this site. Some worked for a while, and some not at all. I just keep going until I find a working combination. Right now I'm taking verapamil (240mg) one every day for the past eighteen months & it is working for me. I have imitrex if one develops, but I haven't had to take any so far. I went to a different neurologist, and his suggestion of upping the dose of verapamil for me is working. To all who suffer, please don't give up! Sometimes we have to keep trying different medicines until we find what will work for us. I have wished my head would explode so I didn't have to deal with these damn headaches, but when the storm was over I felt like myself, and so relieved. I understand the pain, and I'm glad all of you do as well. I did not realize how many of us were out there. Take care everyone. Wes
Wes Cromer <>
Gardner, KS United States
Sunday, May 12, 2002 at 02:07:22 (EDT)

NOTE My message ends with a plea for survey data on antibiotics and cluster headaches. This is a superb site. Congrats. CH is a very debilitating condition. Much under-rated. My attacks occur 35 minutes after falling asleep or 30 - 32 minutes after any amount of any kind of alcohol. A large meningioma was removed from the right occiptoparietotemperal part of my brain 20 months ago. The clusters disappeared, but have now returned, with no recurrence of the meningioma. Research: I would be very interested to know, because of some observations I have made, if any sufferers of c;uster headache have had their headache relieved for a long period by a course of antibiotics given for any purpose, but especially for the treatment of peptic ulcer. I have some personal data suggesting that a chronic local infection may possibley be the cause of cluster headache.
(Dr) Max Whisson <>
Subiaco, WA Australia
Friday, May 10, 2002 at 22:33:26 (EDT)

imitrex injections work every time in about 5-10 minutes. imitrex nasal spray works sometimes if you take it before the headache gets a good hold on you. my husband has had better luck taking 2 nasal sprays within 10-15 min of each other. before imitrex was invented, stadol was the only thing that worked. we still have not found a preventative. so i expect misery once-twice a day for another 3-5 weeks. at least after this cluster ends, we can look forward to another couple of years before it happens again. my husband has had these since the mid 1980's. i think cluster headaches is the worse thing that could ever happen to a person. thank you for inventing this website for us to communicate with those who understand.
CCC <>
Houston, Tx USA
Thursday, May 09, 2002 at 19:22:02 (EDT)

sometimes I get headaces that last for a week or more
terry jones <>
beaverton, or USA
Thursday, May 09, 2002 at 18:00:09 (EDT)

My mind has been destroyed so many countless times,,it has always been a privet personal hell beyond hell i first heard the name clusterhead ache in a news paper article 4 years ago,,i have had these since i was 19 im 39 now,,.i couldnt believe the docters i went to for cat scans couldnt inform me on the likely hood that what i have is cluster headaches,,,I cannot say ever enough for this pricless gift of having information and support, im into my first week of a series ,,after a 3 years of being free of them,,.i use to use only hot water ,,my head would be feel the water but if it went onto my leg i would then feel how hot it was,,often, in the past. i would drift into a weird state of sleep in the shower,,espically if i was in a hotel where the water heater never emptied out as it would in my home.. my shower head i have now is the type that has the staem,,mist selection,,it seems to help...alot,,.right now its 445am,,i almost have them beat tonight thank God,,I drifted to sleep severasl times and couldnt believe i woke up with out doom,,my back is a mess,,,its one reason why i think i woke up before the hell could kick in,,i need to be able to stand in the shower,,i havent trusted docters for a while and my back always has healed,,,i hope it does quickly,,im just feeling elation,,for being able to type now instaed of waking up with doom,,Goood luck to all,,
Thursday, May 09, 2002 at 04:57:46 (EDT)

I just started having clusters two weeks ago. My doctor also has them but he doesn't appear to be knowledgable enough on treatment since I have found a wealth of information from this site. Prednesone prevented one day of attach only because I took six pills at once. Can't continue that! Maxalt is what he has me on now and it I get it early enough I can get some relief after about 40 minutes. I'm going to print everything from this site and see if he will let me try other alternate methods. Wishing all well and a speedy recovery....We'll beat this thing some day!
Rusty Wilmoth <>
Huntington, WV USA
Wednesday, May 08, 2002 at 19:43:30 (EDT)

I am a clusterhead and I am glad that I found out I'm not losing my mind. Thanx for website and the info. Thomas D. Jordan, Cincinnati, OH
Thomas D. Jordan <>
Cincinnati, OH USA
Wednesday, May 08, 2002 at 09:58:00 (EDT)

I am so glad I found this website, I'm happy to know...well, not really happy that I am not the only one that bears the excruciating pain of cluster headaches. Maybe if we all band together we can get more research done and maybe find a cure for this demon!! Looking forward to becoming a part of the group.
brad <>
brenham, tx USA
Tuesday, May 07, 2002 at 21:17:43 (EDT)

I have been a lurker here for the past few months and what I want to know is does anybody moderate the guest book? If so kindly remove all the sales pitches. I come here to try to find relief from this hideous pain and to read about others with same affliction not to try to be sold on get rich quick scams. Just my 2 cents worth
Bonnie <>
Ft. McMurray, Ab Canada
Tuesday, May 07, 2002 at 17:19:21 (EDT)

Hello fellow headache sufferers. I have just recently been diagnosed with cluster headaches. How did I get so lucky to end up with these things?
Gary Prickett <>
Lakeland, Fl USA
Monday, May 06, 2002 at 18:53:04 (EDT)

I have had these killing headaches for about 2 weeks and today spent most of morning in A&E. After having eye checks made doctor suggested CH. I have never experienced pain like this, it comes EXACTLY 2 hours after I have gone to sleep, lasts untill about 4 in the morning and I then go back to sleep to be hit by it again until lunch time. The doctor today said there is nothing other than overcounter pain killers thanks to this and other sites I now know otherwise. I will be armed with a list when I go back in a couple of days!! I might add my own doctor dismissed it as a headace and sent me packing, I am not happy with him!
Martyn <>
Great Yarmouth, uk
Saturday, May 04, 2002 at 10:51:48 (EDT)

Hi my name is diane every day I get headaches and it wont go away.I get these headaches becouse I get constipated every day and it hurts alout.This will be my first time sharing this secret with anybody.I feel silly talking to my doctors about this they think I should get laser surgery on my anis but i just dont have the money.Anyways im glad im not the only one that gets these headaches.
Friday, May 03, 2002 at 21:40:51 (EDT)

great site really pleased i found you. have helped me lots thanks again...
merseyside, uk
Friday, May 03, 2002 at 16:24:40 (EDT)

in remission for 5 years. now here they are again and boy am i hurting. fortunately, oxygen works for me and i am grateful for that. most of my ch's seem to arrive at night and my days are pretty decent. anyone else seem to be having an especially bad time of it right now? at first i was hoping it was just a bad weather pattern but i think the reality is that my remission has run out. nice to find this site. it's really difficult to suffer so much and still keep your sanity. we are a group of really strong people! wishing you all a speedy remission that lasts a lifetime!
lynn <>
bloomfield hills, mi USA
Wednesday, May 01, 2002 at 22:03:14 (EDT)

Hey, I too am a headache sufferer. Ive had headaches since i was 12 months old :S They suck. As a matter fun fact I have a HUGE one right now, and I was just surfing for "ways" to get rid of it.. so far no luck :(
bri <>
Edmonton, ab canada
Wednesday, May 01, 2002 at 19:30:41 (EDT)

Hello I'm from holland.I have chronic paroxymale hemicrania(syndroom Sjaastad).I like to speak with someone who has the same. In holland i can not find someone.
B.Boer <>
Wolvega, Holland
Wednesday, May 01, 2002 at 15:35:58 (EDT)

i suffer almost daily from cluster headaches. i could post my experiences with meds and stuff. jed
jed richter <>
lancaster, ky USA
Wednesday, May 01, 2002 at 14:04:24 (EDT)




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