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 September 2001. 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

This site is wonderful. It is nice to feel part of a group (even a suffering one) after feeling isolated with this malady for so long. People who do not have these headaches just don't understand how painful and demoralizing they are. The episodic nature of them...just waiting for the next one to begin...can be maddening. Also, if you happen to be on a plane or other place where you can't do the strange things (like rocking, rubbing (or crushing) your head vigorously..among others) you can really feel totally helpless. I am in a cycle right now, after being free of them for almost 2 years....any support is a real help!
Ron Schack <rwschack@esslink.com>
Manchester, CT USA
Sunday, September 30, 2001 at 23:49:20 (EDT)

Whoa!!! I can't believe this site is actually here. So many people have treated me like a nutcase (Dr's, xhusband, ect.) that I actually started to believe them. I am self diagnosed, as most of Dr's, have said "you've just got migrains, buck up and be tough" I'm so glad I found others. When I started to read the testimonials, I started to cry.... am still crying.....I'm not crazy! Its such a lifesaver to know someone, anyone... can understand. Thank the Lord for whoever is responsible for this site. Raquel>32>first sign of the beast 1 year ago
Raquel <Franci@ev1.com>
San Antonio, TX USA
Sunday, September 30, 2001 at 23:34:44 (EDT)

So glad my husband found this site for me!! I not only suffer from clusters but migraines as well. I can only use a medicine for a certain amount of time and then it quits working. So far, I am on my third medication for my migraines. Possibly, the clusters have changed over into migraines. However, I wake up with a headache almost every day. When they were regular clusters, they stayed around for three or four weeks, go away for a couple of days and then be back for another three or four weeks. It's great knowing that I am not alone is this anguish!!!
Shari McCoy <gtmccoy@bbtel.com>
Vine Grove, KY USA
Sunday, September 30, 2001 at 21:28:23 (EDT)

I've been suffering for the past 30 yrs. with these horrible headaches! They usually hit about every 3yrs., and last up to 6 months. I'm currently in a 5month season, and have been taking 3 imitrix injections daily, verapamil, oxygen, lithium, and topamax. Also, I had a occipial nerve block done this past week, to no avail. I'm now searching for other blocks. Has anyone been to or heard of the Michigan Head Pain and Neurological Institute? Please let me know. I've already missed 3 weeks of work, so any info. would be greatly appreciated!!!!!
Victor Scott <Cindyndickscott@aol.com>
Birmingham, Al. USA
Sunday, September 30, 2001 at 21:27:52 (EDT)

I am 33 years old, and have had these f'n things for 13 years....I just started my latest cluster 2 weeks ago and for the first time I am fearful I will be dealing with them for the rest of my life. I had always read/thought that they go away with age, but I don't know. The big difference with my latest cluster is that I am vomiting more....I wish I could make my first post here a positive one, but my days and outlook are rather dark. David
David <saintinthecity@yahoo.com>
Park Ridge, NJ USA
Sunday, September 30, 2001 at 17:33:25 (EDT)

Hi,my husband has suffered from cluster headaches for many years.We married 7 years ago and in that time I have taken him to many doctor's,who have perscribed things like oxygen, imitrex(works sometimes)prozac(worked last year).I finally took him to a doctor who's specialty is pain management.This doctor was wonderful he put him on 4 meds and so far Steve has not had a headache in a few days.I feel for all the people who suffer from the headaches because I know what they do to my husband and me,it is almost as hard on the family as it is the person who suffers from the headaches. Goodluck to you all.
Debbie Proctor <debbieap1@yahoo.com>
Elizabethtown, Ky USA
Sunday, September 30, 2001 at 16:42:20 (EDT)

Hi everyone, Tim and I have been posting on the board for about a month now. The day we came across this site was the best day ever. Tim was hit with CH's in October of 2000 and has had them non-stop since. Tim can remeber having headaches about ten years ago and then they stopped. But now are back full force. We have been able to share so much information as well as our frustration in dealing with this pain. Just as everyone has been here for us we are there for you. We look forward to logging on each day hoping to see less and less messages which we hope means PF days ahead. Thanks for the support, Tim & Laurie
Tim Leach <laurie.leach@verizon.net>
St. Peters, MO USA
Saturday, September 29, 2001 at 22:37:55 (EDT)

Hi! I am 29 and just began my first cycle of cluster headaches. I first thought it was a nasty sinus headache, but after visiting the Dr. and speaking with my father, who has suffered from clusters for 30+ years, they are the much dreaded cluster. I am afraid to go to sleep, afraid to drink, afraid to eat nuts & chocolate - this sucks! My father and I could not have followed a more similar path. We both grew up with migraines - remission during puberty, have chronic sinus problems, we both sleep face down with our right eye planted in the pillow - same side of the attack. I have followed his approach of relief - nasal spray and steam (face essentially in the boiling water). I received a prescription of Fioricet (codeine) from the Dr., which seems to be OK - sometimes works. I have also begun a prescription of decongestants and steriod nasal spray. I am 100% positive that my cluster headache was initially brought on by sinus problems and STRESS. Right now, I would classify my headaches as a 9 on the KIP scale. Any recommendations from other sufferers would be greatly appreciated. I simply wish the pain would subside for all of us!
Russell <rschuster@snet.net>
Ridgefield, CT USA
Saturday, September 29, 2001 at 16:31:45 (EDT)

First I want to thank all the people who make this site possable and keep it going it realy is a blessing in a lonely battle. I have had migraines for about 20 years and episodic C.H. for the past 4 yrs.(misdiagnosed for the first 3 as sinus problems)thanks to this sight I know I am not crazy (well maybe) and I am not alone or as bad off as some.I found this sight during my last cycle.Had a lot of Kip 10s and the Demons almost beat me.If not for Oxygen witch I learned about here,I probably would have ended the pain for good.So for myself,my wife and three children THANK YOU!!!
Billy J. <memcmac@stny.rr.com>
Corning, N.Y. USA
Saturday, September 29, 2001 at 01:37:19 (EDT)

I have been suffering with these for almost 22 yrs and nothing seems to work although I have the feeling that while sinus problems and cluster headaches are 2 separate animals, I believe one triggers the other in some way.
Christel <Ixtapa99@aol.com>
Carol Stream, IL USA
Friday, September 28, 2001 at 18:31:12 (EDT)

have none yet as i just visit for first time.
bottina demosthenous <tineke2@hotmail.com>
londen, essex england
Thursday, September 27, 2001 at 18:50:00 (EDT)

I am a cluster-head & have been for over 14 years now. I was very happy to find such a web site (already saved at the top of my favorites list) with so much information & to also see that there are many others who know what it's like to have these damm headaches. Thank-You for creating this site. ROCK-ON ! ! !
LD Hugo <hugo4dranch@cs.com>
El Paso,, Tx USA
Thursday, September 27, 2001 at 14:03:45 (EDT)

Hello. I started having these evil headaches at 23. For the past three years I have had the hardest time getting support from both my friends and co-workers. It is good to know that there are others like me out there. I wish More people would be educated about our condition. Perhaps this will help them be more sensitive and not just assume that you are stressed out.
Wendy <wenstar23@hotmail.com>
Miami, FL USA
Thursday, September 27, 2001 at 13:36:55 (EDT)

I didn't start suffering with CH's until I was in my 60's and have had them almosy constantly with only a month or so break here and there. Thank goodness I have an understanding husband, altho he has never had a headache in his life, without his support I would not be able to handle these. My most excrutiating CH occurs around 1 to 3 a.m. and will bring me right up in bed. Then I head for the ice pack. I also take Zomig and Percocet whem I have an attack. I am on a daily dose of Depakote ER. Wonder if the powers that be will ever come up with a cure for these horrible headaches? They sure can put a strain on your life. Good luck to everyone out there and God be with you all. Dot
Dot <BusDot1@aol.com>
Leesburg, Fl USA
Thursday, September 27, 2001 at 04:43:35 (EDT)

HI THERE IAM SO HAPPY TO HAVE FOUND THIS SITE. ITHOUGHT THAT I WOULD NEVER FIND THE PROPER HELP. IVE BEEN SUFFERING FROM THESE CLUSTERS SINCE I WAS 13 YEARS OLD AND I AM NOW 30. YEAR AFTER YEAR WHEN EVER IT FEELS LIKE IT THE DEVIL( THATS WHAT I CALL IT NOW) WILL NEVER LEAVE . IAM TERRIFIED OF THE ATTACKS AND NO ONE SEEMS TO KNOW HOW TO HELP ME. NEUROLOGISTS SAY THERE IS NOTHING WRONS. 5 OF THEM! YA RIGHT!!!!!!!!!! WELL IAM GONNA HAVE A SPELL NOW I FEEL IT SO I HAVE TO GO. DALI
DALI ROY <dalithebomb@hotmail>
toronto, ont canada
Wednesday, September 26, 2001 at 13:07:33 (EDT)

Hello everyone. I'm 37 and have suffered on and off for the past 15 years. Firstly I would like to thank the designer(s) for this site and also to all the people who have so richly contributed to it. You have helped me enormously. 2 months ago, after a break of 2 years they started again. Normally I get 2-3 per day, the pain varies from 7 to 9 on the kip scale and a normal episode will last for about 4 months. My trigger is a prolonged disruption of my sleeping pattern. In desperation I recently tried the water treatment, for me the results have been wonderful. It is worth those strange looks as my working day appeared to be an endless cycle of drinking and peeing. My headaches have now gone. I believe that if it wasn't for the advice on this page I would still be suffering. Thankyou.
Andy Salmon
Wien, Austria
Wednesday, September 26, 2001 at 10:44:06 (EDT)

hi i was born with ms. ive suffered headaches since i could talk my brain hurts all the time my head hurts everyday with ms its a sharp pain like youve been shot on one side of your head left or right light bothers me sound ive been on narcotics to numb it but god my liver needs a break i feel like a junkie. i want a life i want a beer no mo pills i have a rotten mouthed 12yr old stress makes me sick i want a life i wanna be HEALED!!!!!!!! michele fike ms sufferer
michelefike <thunderwing115@yahoo.com>
newkensington, pa USA
Wednesday, September 26, 2001 at 02:57:41 (EDT)

hi i was born with ms. ive suffered headaches since i could talk my brain hurts all the time my head hurts everyday with ms its a sharp pain like youve been shot on one side of your head left or right light bothers me sound ive been on narcotics to numb it but god my liver needs a break i feel like a junkie. i want a life i want a beer no mo pills i have a rotten mouthed 12yr old stress makes me sick i want a life i wanna be HEALED!!!!!!!! michele fike ms sufferer
michelefike <thunderwing115@yahoo.com>
newkensington, pa USA
Wednesday, September 26, 2001 at 02:56:32 (EDT)

I have been having migraines for 15 years. I've gone from 14, to 20, 31 episodes each month. I have taken almost every known medication/remedy with no success. I have had to go in for shots 1-3 per month over the last year. They have escalated in frequency, duration and level of pain that life has been unbearable. This pain caused me to stop working in order to get some control over this problem. Yet even being home for the last 9 months to (reduce my stress levels) has had no effects. Finally, after stumbling on a medical formulary in my GP office, I looked up migrains took note of typical meds. prescribed and found at long last a medication that has been the answer to my prayers. This medication is called Sansert. The only problem is because of it's potential dangers, I can not be on it long term. My question for anyone out there who knows about how this medication works (in reducing seretonin levels) Is there any natural ways to reduce the production of seretonin in the body. I know many foods that increase seretonin. But with me I've found seretonin to be a key factor in the increase of these episodes. Please e-mail me if you have any helpful information.
Sheila Spainhour <sspainhour@hot.rr.com>
Woodway, TX USA
Tuesday, September 25, 2001 at 17:42:00 (EDT)

Hello All, My name is Ken and I am a 47 year old sufferer of clusterheadaches. I have had the headaches for over 12 years now although I didn't realize it until earlier this year when a link at the Erowid website led me to this clusterheadache site and the comments concerning psilocybin and LSD as treatment.Here I found a description of symptoms which described me as a clusterhead! In my case the attacks are usually once or at times twice a day. An afternoon nap or snooze (1 to 4PM) or whatever small serving of alcohol will bring on a headache...in my case usually lasting an hour, rarely over 1 1/2 hours.This can repeat later in the evening but without the fear and predictability of the afternoon headaches. Over the years I had learned to accept my state; foolishly attributing it to stress; never hearing about or making a connection with anyone in a similar state and never questioniong a doctor.My comfort was knowing that each headache would disappear within an hour and a half. I discovered Flash's information at the end of an episode last winter and a couple of experiments with Psylocibin cubensis seemed to do the trick but it was at the end of an episode and the scientist in me still had his doubts. I also read on this site that episodic sufferers'occurences might be related to changing seasons and light change. I had not considered this before but it did sound like my situation. And sure enough last week a new cycle began,the headaches growing more intense with each day. The time had come for a real test. Having read that LSD works as well... Sunday I cut less than 1/2 off a "spiderman blotter" gifted me by a deadhead friend and dove ahead in. Well the dose was a bit more than expected and I hung on the pecipice of a dark chasm a few hours but weathered the storm well enough despite a restless sleep. (I think 1/2 the dose might have been enough) Yesterday 1 beer as a test at 3 PM No headache...maybe slight shadows. 5 to 6 PM Another beer; this time a strong Belgian golden. No headache. We'll see how today goes but it does seem to me that this is: Another Success Story!! Thank You all and especially Flash I'll follow up in a day or two with progress report.
Kenneth Krugman <kk23@optonline.net>
Matawan, NJ USA
Tuesday, September 25, 2001 at 13:44:02 (EDT)

Good day! I have been lurking around here for some time and can't begin to express my gratitude to DJ and all you wonderful folks for the support I see. You are all wonderful people! I have been an episodic CH for 13 years, and entered what has become the most vicious cluster yet near the end of July this year. My father (a now retired physician) was plagued by the demon from age 50 through 65, but has not had an episode now for over 20 years. Makes me look forward to retirement even more! Keep up the fabulous work, and thanks again for your great forum, well organized and thorough information and teriffic support!! Wiley
Wiley <flywileyp@hotmail.com>
Hereford, AZ USA
Tuesday, September 25, 2001 at 13:42:45 (EDT)

Hi just finished a month long cycle & found this website. Thanks so much for being here! Perhaps now my husband & mom will have an inkling of what I go through & stop telling me to try relaxation therapy & get CAT scans! Thank you for all the good info & the knowledge that I am not alone!!!!
Trish Nenni <jdnenni7@aol.com>
Rochester (Hamlin), NY USA
Tuesday, September 25, 2001 at 13:40:31 (EDT)

I'm a 23 yr old female and was diagnosed with cluster headaches last year.. It is nice to know I'm not alone. But I wonder if there are any suffers out there my age..I have yet to find a successful treatment, though your site has sent me in the right direction. Thank you so much. Good Luck to all the other suffers out there. We will get though it. :)
Jamie <jamieflint@msn.com>
Renton, WA USA
Monday, September 24, 2001 at 17:05:27 (EDT)

I don't know if I am a true cluster headache sufferer or if I have a "mild" form of this disorder. The headaches occur fairly regularly (like monthly) and last for several days. I often wake up in the morning with a pain behind my one eye, sinuses on that side and a portion of my head trobbing. About the area you'd cover if you place your palm over your eye. The headache usually isn't horrible, but my eye feels like it is going to explode. I haven't been to a physician yet, because the headaches aren't terrible. Sometimes rest and Excedrin migrane will relieve the episode; but sometimes it can go unabated for 24-48 hours. All I can say is thank God the pain isn't like I've seen discribed on this site. If I do suffer front cluster headaches, will the pain level eventually increase to what is described here?
diane major <dkmajor@home.com>
Pleasanton, CA USA
Monday, September 24, 2001 at 13:29:51 (EDT)

Hi, glad I found you.
Danny <danny.faith@ubsw.com>
LONDON, ENGLAND
Monday, September 24, 2001 at 11:56:17 (EDT)

Thank You! Thank You! Thank You! Thank You! It is unbelievable how much this site that I never even thought to look for has helped me in the last 30 minutes I've been on!! I now know that I AM NOT INSANE!!! Reading comments brought tears of relief to me as I realize there are others out there like me. After suffering for years, the day came when I knew there had to be something I could do for the pain. Late at night, while crying to my very understanding husband, he gave an ultimatum when I stated that I wish God would just take me from this earth so I would no longer have the pain. With 3 young children I dearly loved, I sought help and am now aided by Imitrex injections for my cluster headaches. After tonight, I know this web site will be my newest best friend!!!!!!!
Edna Boudreaux <talktoedna@yahoo.com>
Raceland, LA USA
Monday, September 24, 2001 at 01:02:08 (EDT)

First off,,a deep heartfelt thanks to DJ for this site,just read his story,and had tears rollin down my cheek,followed by a grin about the co-workers H/A.And many thanks to all the folks who share their stories and info,what a vast amount of info on 1 site. God Bless You All. Sincerely,Bryan
Bryan <PDIBRYAN@AOL.COM>
Ann Arbor, MI USA
Sunday, September 23, 2001 at 07:35:02 (EDT)

I am very glad to have found this place. I have been suffering from these headaches for about 7 months. They have become a daily part of my life and are beginning to interfere with my quality of life. Its good to see that there are other people. I just wish that my doctor knew more about them. I have some side effects from them such as termbling, stuttering, and stumbling alot. I am forgetful now and have had to reduce my course load at Univeristy and just really want to know what others doto control them. Please drop me a line if you ever have any suggestions.
Tracy <thowald@nbnet.nb.ca>
Saint JOhn, NB Canada
Thursday, September 20, 2001 at 21:22:16 (EDT)

I'm just glad to know that I'm not the only person who goes through hell on a daily basis. There have been many of days that I got on my knees and begged God to just take me now, because I just couldn't take the pain anymore. I have lost a job over these headaches. No one ever seems to know just how much pain that I am going through. I pray every night that some one will find a cure for these painful headaches. Curtis
Curtis Richard <c_lee@hotmail.com>
Houston, TX USA
Wednesday, September 19, 2001 at 22:57:40 (EDT)

I have been suffering with these miserable things for 23 years. before being diagnosed I had all my teeth pulled thinking this was the cause of these horriffic headaches. I put myself through years of nasal tests, cat scans any test that you can think of with no success and no relief. No doctor i went to new what i was going through. My wife at the time thought I was a fruit cake. about 5 years ago i finally got the word cluster headaches. big deal its got a name. it has no cure. at times the pain gets so great i just want to pass. it is the main reason i do not own a gun. i love hunting but just don't trust myself with one during an episode. my cycle just started about 2weeks ago i really really hate these things. I'm 46 now and beginning to worry wether these will wind up being the death of me anyway . the strain it puts on your heart has got to be doing something. well thanks for letting me talk, just found your site seems like a good thing, I'll check back later. Good luck all try to stay in good spirits they will pass for a while.
Mike <jmhumphrey@home.com>
Taylor, mi USA
Wednesday, September 19, 2001 at 17:08:15 (EDT)

Hey all! I'm 19 year old male and I've been suffering from these headaches since i was about 8 or 9 years old. I never seem to get the traditional group of headaches but more of a constant headache that never stops once it starts. I haven't been able to trace when they'll come or how long they'll go for. I'll go for maybe two or three weeks without any and then all of a sudden one day I get a headache and i'll have it for days, sometimes i'll get a few hours of relief between a CH. I've tried all kinds of medicine and I haven't found one to work for me. Excedrin Migraine worked for a short while but I have no luck with it anymore. This is a great site! Stay strong we'll get through these beasts!!!
Matt B <matt_b17@hotmail.com>
Mount Pleasant, MI USA
Wednesday, September 19, 2001 at 14:54:54 (EDT)

I have suffered with clusterheadaches for eleven years and have tried every prescription med presently available. About seven years ago in the middle of a cluster siege (I was experiencing 22 a day) I popped two Aleve pills. I could feel my cheek pop and crackle and for the next several hours I had no headaches. I continued taking Aleve for three days and it broke the cycle. Since that time, I have managed to control, but not rid myself of them, by using this drug. I also have migraines, and this drug is not effective for that headache. Has anyone else ever had any luck with this drug?
Karen <Sovell2@aol.com>
USA
Monday, September 17, 2001 at 21:37:38 (EDT)

I've been a cluster headache sufferer, annually for 7 years now and presently has been going through a cluster episode for about weeks. would like to hookup with your website and find out more from other people that's going through the same painful headaches. thanks!
eugene kealoha <kupunasea@aol.com>
waikoloa, hi USA
Monday, September 17, 2001 at 21:15:02 (EDT)

Hello. I am soo pleased to have found this website. I have been coping with these awful headaches for two years now and I have had an assortment of drugs for them. I really hope that I do not have to suffer this punishment for too many years, though I am aware my two years of hell with work, relationships, depression, motivation, etc. pails in comparison with some of the horror stories I have read about on this wonderful site. I wish that I could think up a cure for all of us..if only!! Take care and I wish you all good luck! Gareth J.
Gareth J. <gags10@hotmail.com>
Cardiff, UK
Monday, September 17, 2001 at 04:49:39 (EDT)

Thirteen year sufferer.
Sonny DeShong <sdeshong@texasbag.com>
Houston, TX USA
Monday, September 17, 2001 at 01:35:56 (EDT)

My dad has been suffering from CH for as long as I can remember. I have watched my dad go through what we call "seasons of hell" for so many years, I wonder how he does it. My dad is a very manly man that was brought up in an environment where men don't show pain. I must say that I have never seen my dad helpless against anything else is my life except CH. I have tried to figure out why such a wonderful person has been cursed with such a devastating disease and why there is no treatment. I am deeply saddened to find so many others that are suffering form this horrible dose of hell. I am thankful for the fact that this site exists and that finally we may be able to talk with people that really know what pain is.
Stacey <res04g41@gte.net>
Post Falls, ID USA
Sunday, September 16, 2001 at 19:18:05 (EDT)

i have been getting clusters for 22 yrs. i didnt know what they were for 10 yrs. i was on lithium for 14yrs. it worked but started giving me problems last dec. when i went on high blood pressure pills. ive been off the lithium for a month. the headaches are back in full force. i am just finding out that i am not alone. thank god for the internet!
bill taylor <btaylor228@home.com>
allanburg, ont canada
Sunday, September 16, 2001 at 11:31:41 (EDT)

By -the-way. . .I find oxygen works great as an abortive! I have had tremendous luck with it. However it does little or nothing to limit re-occurances. I can usually abort a headache withing 10 minutes using O2!
Brent <brd_01@msn.com>
Grand Rapids, MI USA
Sunday, September 16, 2001 at 07:14:17 (EDT)

I have just returned to a cycle of headaches after a year and three months away from them. Typically I would always have a two week period twice a year (Spring and Summer), but I was lucky for a while. I think that they decided to have vengence upon me this time for being away for so long, hence aimlessly wandering the internet while dealing with the best they can throw at me. I didnt even realise there were so many sights aside from the common-fare medical advise type items. Its nice to see.
Brent <brd_01@msn.com>
Grand Rapids, MI USA
Sunday, September 16, 2001 at 07:09:33 (EDT)

I have just returned to a cycle of headaches after a year and three months away from them. Typically I would always have a two week period twice a year (Spring and Summer), but I was lucky for a while. I think that they decided to have vengence upon me this time for being away for so long, hence aimlessly wandering the internet while dealing with the best they can throw at me. I didnt even realise there were so many sights aside from
Brent <brd_01@msn.com>
Grand Rapids, MI USA
Sunday, September 16, 2001 at 07:09:32 (EDT)

I am a 36 yr. old female who suffers from these monster headaches. I started having clusterheadaches approximately one month after having surgery on a brain aneruysm. The first time I experimented the excrusiating pain I thought I had an aneruysm rupture. By the time I was getting ready to go to the e.r. the headache left as fast as it came. Not knowing what it was, through time I was able to calm myself that the headache would go away. They would wake me up around the same time each morning, and last about 45 minutes each episode. I wasn't diagnoised right away and went through many more testing before finding a name for this pain. It was comforting to know, that there was in fact a name and I wasn't alone. Before then I was frightened to go to sleep at night, trying all didn't types of "antidotes" different sleep patterns, trying to sleep sitting up, or not really sleeping at all. However, walking at a rapid pace, and oxygen do seem to help most of the time. I know somehow, somewhere there has to be an explanation for this unbearable pain, some link. I would appreciate any information of anyone who suffers from these headaches, what they believe sparks them, my email address is rkreul@earthlink.net there has to be a solution. Thanks
Rhonda K <rkreul@earthlink.net>
Ashdown, Ar USA
Friday, September 14, 2001 at 19:07:21 (EDT)

Having been a sufferer for the last 2 years or so, it wasn't until I went on holiday to the States 3 weeks ago, where I met a fellow passenger who suffered the same symptoms, that I fully realised the seriousness of my condition. I now know I am not the only one in the world who sits there alone, bangs their head regularly and cries like a big baby. Now I propose to visit my doctor next week (now booked) and hopefully then I will be able to end my dependency on 20-30 paracetemol per day. Good luck to you all.
Antony Hopkins <antony.hopkins@aggregate.com>
Leicester, England
Friday, September 14, 2001 at 07:38:21 (EDT)

I suffer from terrible headaches and pressure in my eyes! Sometimes a have to wear dark glasses!
Karen <kargb@aol.com>
Miami, Fla USA
Thursday, September 13, 2001 at 15:58:12 (EDT)

I think this a great place for people that are suffering from cluster headaches, I don't have them but my finacee Mike B does have them. I have just seen some just htis last weekend for the first time. I know he feels embarassed about them and I feel so helpless that I can not do much for him but I can give him all the support he needs. He talks alot about it on the message boards, which I think that it great. You can post this on the message board if you like so all the sufferers know I am pulling for them all even though I do not have this med condition. Hey everyone this is MikeB finacee, just want you all know that I feel for you all and my prayers and thoughts are with you, I support you all. Mike has been having a very hard time with these cluster headaches and his women does understand and loves him very much. Love and best wishes to all, Love Annette
Annette Marie Way <anniehasstyle@email.com>
Springhill, Fl USA
Wednesday, September 12, 2001 at 00:11:42 (EDT)

New to the board....I guess my 5-6 per week don't compare w/ some other horrors. Had them for three to four years in the 80s; they totally subsided until this Summer. NOW A PILOT FOR A MAJOR AIRLINE. Haven't had one while flying but I do carry an Imitrex Spary at all times. My lively hood depends on coping and dealing with the situation. Any ideas on successes? I can't take any meds with side effects for obvious reasons. I do have an unlimited O2 supply onboard!
Stu <WaldoUSMCR@aol.com>
, USA
Tuesday, September 11, 2001 at 22:13:18 (EDT)

Glad to have found this site! If my cycle holds true, I'm nearing the end of PF (2 yrs) and dread my next 2 month session with The Beast. Verapamil and Prednisone are my best preventatives; Cafergot and hot, strong, tea my best relief if the Beast slips thru.
John Grafton <grafwick@msn.com>
Akron, OH USA
Monday, September 10, 2001 at 15:35:38 (EDT)

I have been suffering from cluster headaches for some time. Medication does not work for me. My advice is to try some form of fairly vigorous exercise. I know it does not always work and you have to do it before the pain gets hold of you. I do yoga and I recommend the Salute to the Sun series of ansanas.
paul Taylor <pt93@hotmail.com>
Great Britain
Monday, September 10, 2001 at 09:16:24 (EDT)

Hi, my name is Tonnyiel. Someone very close to me by the name of Gail suffers from these "Cluster Headaches". I went to visit her a few weeks back and she was telling me her story about how she feels and what she knows about this disease. As I was listening to her speak about this horrid series of experiences I could see the fear in her eyes and the hurt that she could feel just thinking about them again. She told me that no matter how much she disliked someone she would NEVER wish this uppon them. She has them anywhere from a half hour to 4 hours without a break. She can't eat anything without vomiting, she still drinks water so she won't become dehydrated,she uses ice packs to soothe some of the pain and she has to ly in the dark,tossing and turning. Her boyfriend cannot even stand to see her in so much pain so he goes to sleep leaving her there to cope with this awful thing herself.
Tonnyiel.S <Coolsugar76@hotmail.com>
Langley, B.C Canada
Monday, September 10, 2001 at 01:54:13 (EDT)

Hi,my name is Colin and I've suffered with these things for 14 years now, the first 10 everyday,sometimes twice or three times per day up to six in a single day. I found this site by accident whilst trying to setup a (cluster headache support group)only to find you guys have already done it.My CH are chronic and intractable and have tried every prophylactic treatment on offer repeatedly.These Clusters have totally destroyed my life bit by bit day by day. I honestly believed that a human would pass out at this level of pain, ha what a joke, if only. I have never met another sufferer, so you can imagine my joy at finding this site after all this time.This has been a journey that only you guys and gals could truly understand. I still just try to get through each day & night,one at a time. In fact I find it amazing I'm still here, if you know what I mean.By the way I'm a 39 year old Australian male and these things started at 25, and as I later discovered my father and his brother had these at the same age, but theirs subsided after 12 years.Well I'll finish for now but if anyone wants to hear an unbelievable but true story give me a call or email at Phone 02-66793296 or kolin@iprimus.com.au Thankyou all for starting this site and I sincerely wish you's all the best. Colin
Colin W Shaw <kolin@iprimus.com.au>
Eungella, NSW Australia
Sunday, September 09, 2001 at 23:14:10 (EDT)

My moms words are like yesterday, Love The lord, get a jod and walk out the front door! good-bye
I know < We're >
never , a lone
Sunday, September 09, 2001 at 17:14:28 (EDT)

Hi everyone. It's nice to see I'm not alone. I'm only 15 (about to turn 16 this month), and I've been suffering for a few years now (about 3). I tried everything from generic Tylenol to other forms like Excedrin and stuff and NOTHING WORKED! I've been tested for allergies and I supposedly have none, but I don't know. Aspirin for a while was the only thing that worked!!!! Now I'm starting to take Duradrin but only for "the really bad ones"-hehehe. :) And yes, it does suck to wake up with a migraine...it's why I like sleeping so much but then...eh, gotta wake up sometime! Peace, B.
Brandi <qos_fan_rainlamp@yahoo.com>
Chincoteague, VA USA
Sunday, September 09, 2001 at 14:43:51 (EDT)

Ive suffered chronic CH for over 10 years now, and Ive walked (my dance) thousands of lonely miles. Now ive found this site, wonderful to know youre not by yourself. Remove the "cat" to mail me
Stephen Baker <stevebakerj@"feline"lineone.net>
Birmingham, West Midlands, UK
Sunday, September 09, 2001 at 11:58:47 (EDT)

An excellent collection of a lot of information. The medical info was well worth the read. Boy do I get my money's worth out of my insurance company... 8)
Ethan Solomita <ethan@cs.columbia.edu>
Sunnyvale, CA USA
Sunday, September 09, 2001 at 04:06:12 (EDT)

Fortunately I am in an off cycle right now, but just wondering when the next bout will begin. I am glad I found this sight!
Rich <wrenchy100@yahoo.com>
Sterling Heights, MI USA
Saturday, September 08, 2001 at 22:31:05 (EDT)

I'm a 41 year old male. i eat healthy, take vitamins, go to the gym 3x/week. 2 weeks ago, out of the blue, my right eye drooped halfway shut & the side of my head exploded. i took ibuprofen, then aspirin, they did nothing. finally took vicodin my girlfriend had leftover from a root canal. next day, same time, same thing. i thought it was a virus and would go away. after a week of this i went to a GP. luckily he knew what it was. altho he had never seen a case, he had read about it. the new strategy, which has been working, is as soon as the eye starts to droop, pop a vicodin. that keeps the attack away, altho there still is a background headache. someone else's post mentioned a warning 'ping' in their nose, i get that too. i'm going to a neurologist for a cat scan this week, just to make sure that it's not a tumor, but after reading the symptoms, i have no doubt. since this is my first cluster, i'm quite anxious to discover if i'm episodic, and this crap will go away for awhile, or if i'm chronic (screwed). i'm not crazy about taking vicodin every day, but if it works, that's fine with me. a lot of people seem to have success with imitrex. i'm wondering if there have been any successes with alternative medicines, acupuncture, chiropractic, herbals, etc. it's scary to see how many posts there are here just in the past month. and since this is a guestbook, not a message board, all of you are new to this site as well. almost every one i've talked to about it has never heard of clusters, think of all the people who have been mis-diagnosed. i'm very happy to have found this site, i'm sure i'll be here again.
Glenn <ggrant@nyc.rr.com>
new york, ny USA
Saturday, September 08, 2001 at 12:57:57 (EDT)

I think the site is superb! Ive just got a new partner & am about to start an attack of the KILLER HEAD.This may go some way to help her understand what Im about to go thru.KEEP YOUR HEADS UP FOLKS, CHEERS. ANT
ANTONY WHITTLE <CORVETTE3158@aol.com>
BASINGSTOKE, U.K.
Saturday, September 08, 2001 at 11:16:47 (EDT)

I can't imagine more people than just me going through this excruciating nightmare. Nighttime stinks!
Brandy Coody <countrychic709@msn.com>
DeRidder, La USA
Friday, September 07, 2001 at 12:03:17 (EDT)

Great site! I have been a suferer for 43 years. My attacks began when I was 14. My episodes last for 1 1/2 - 2 months and usually come once a year in any season. I discovered Oxygen 12 years ago and it has allowed me a semi-normal life. It doesn't work for everyone but I would suggest sufferers try it before swallowing the real heavy-duty medications. You never know it might work!
Larry Rumming <lrumming@islandnet.com>
Nanaimo, BC Canada
Friday, September 07, 2001 at 02:03:00 (EDT)

I've been a cluster headache sufferer since 1976. They started a couple of months after I had knee surgery. My Doctor diagnosed them as "tension headaches". The headaches occure almost exactly 60 days apart and last about 9 days. After 14 years of this they went away. Then in 1994 I had to have surgery on my other knee. Back they came. In fact one is starting today, which prompted me to search the internet. I'm sorry that so many people have to go thru what I do, but now I know im not alone.
Frederic D. Scott <scotulare@mediaone.net>
Tulare, Ca USA
Friday, September 07, 2001 at 00:18:32 (EDT)

I had suffered with CH for about 6 years only to have them return after almost 6 years remission.It's great to know that i am not the only grown man rolling around on the floor in tears,groaning,squeezing my head between my arms,banging my head into a pillow,pushing my palm into my eye,pacing and running in place for hours repeatedly during the middle of the night. Great site you have here!! Thanks.
John F.Malone <Irish65@charter.net>
Hampden, MA USA
Thursday, September 06, 2001 at 20:55:41 (EDT)

I have been a sufferer for 20+ years, every 23-24 months for a 6 week period and there due now. I was only properly diagnosed about 8 years ago, and i am working WITH my doctor to find a drug that reduces the devil! Great site i'll be visiting regulary
Tom Nash <thomasjamesnash@aol.co.uk>
hastings, England
Thursday, September 06, 2001 at 16:08:05 (EDT)

I have been suffering from CH for about six years now. They started when I was 25 and are still going strong. I cycle about every 4 months and they last for about 2-3 weeks, usually 2-3 times per day. First I want to thank the webmaster and the contributors for this site. I was mis-diagnosed with chronic sinus infections / headaches four years ago and since then I have had two endoscopic sinus surgeries and have been on antibiotics about 8 months out of the year. I overheard a colleague talking about migraines and clusters yesterday, and last night I did a search on clusters and found this site. Anyhow, I have been avidly reading all of the information contained here since that time, and I cannot tell you how grateful I am to finally have a name to put to my condition. The pain is still here, but at least I know what to call it, and hopefully someday how to deal with it. I cried last night, not because of the pain, but with relief that after six years I finally know what I have. So, the anti-biotics, nasal sprays, and various other junk went in the trash this morning. Now, I need to find a doctor that can help. I can't wait to fire the bastard who missed this four years ago and has been filling me with toxins since then. If anybody knows a physician in the South Denver area that has helped, please send me an email. Thanks for letting me vent!!
Brian <dedredneck@yahoo.com>
Highlands Ranch, CO USA
Thursday, September 06, 2001 at 12:28:46 (EDT)

I have been a sufferer for five years that I can remember, but thinking back I remember headaches keeping me up throughout my childhood. I am in the midst of an attack at the moment and it has been ongoing for three weeks. My doctor has put me on Zomig, and they seem to abort the attck before they happen leaving me symptom free for more than 24 hours (including restfull sleep!)I don't know if it's something to do with the UK, but the doctors over here seem reluctant to prescribe oxygen.
Abbas <Abbas_ah@hotmail.com>
Middlewich, United Kingdom
Thursday, September 06, 2001 at 11:59:18 (EDT)

I am 32 years old and have defied basically all the "rules" or generalizations that go along with clusters. First of all, I am female and second of all, these suckers started when I was 12 years old....20 years now. I have had two long breaks of about a year and a half each (each when my children were born) but other than that, I have the typical cluster break of 4-5 months before they start right back up again. I HATE seeing so many people here but it is nice to know I'm not alone.
Susan <susan_and_chad@msn.com>
Richmond, VA USA
Thursday, September 06, 2001 at 09:31:45 (EDT)

I am 43 and have been suffering from CM for 22 years. They were really rough through my twenties. When I was 31 I had a solid year with only 20 or so days off. I was a complete mess. Then they stopped for ten years with only a few short attacks! Two years ago exactly I had a month of hell, then nothing until now - they started three weeks ago again. I'm glad I thought to look for a site like this today. Hi everyone.
Jeremy <thepingthing@home.com>
Vancouver, BC Canada
Wednesday, September 05, 2001 at 22:58:59 (EDT)

I've been diagnosed with CH for two years now.(I am 53 yrs old). The Doctors tried every drug on me to no avail. After about giving up , one Doctor gave me oxygen and it gave me immediate relief after about 20 minutes of inhaling it. I do not run out of oxygen !!! period. I take my tanks wherever I go, work or play. I dearly hope that the oxygen will not fail me in the future as it will be time to LEAVE.
Steven Hill <sevolter@hotmail.com>
Elon, NC USA
Wednesday, September 05, 2001 at 19:09:57 (EDT)

I am a 23 year old female and I am sooooo glad that I found this site. I am suffering from a cluster right now as I type which is probably the only reason I found this site. It is wonderful to find people who suffer from the same pain that I do, but at the same time scary that this many people suffer from this pain. I would love to hear from any one who can shed any light as to how to cope or even treat clusters. Thank you for this site.
Leta <twoleta@hotmail.com>
Tulsa, OK USA
Wednesday, September 05, 2001 at 17:18:47 (EDT)

I have suffered from cluster headaches for over 30 years now- they started when i was in my early 20ties and have settled into an 18 mth cycle. have been hospitalised several times and was given a diagnosis of Horton's Headaches(anybody else)the cycle stars with 1 attack then a few days later another untill eventually i can have as many as 12 attacks in a day.The whole cycle lasts about 3 months and I dont't know how get through them. Originally I was treated for megraine and nothing worked. I was eventually put on Oxygen which initially appeared to reduce the intensity but soon made no effect. approximately 10 yrs ago I stated reflexology and that delayed my attack for about 4 months. since then have tried combinations of reflexology accupuncture and cranial ostiopothy which have all had some effect in either citting down the severity and number of attacks. I have recently been suffering from severe depression and have been taking "Effexor*xl" venlafaxine 150 mg/day and my cycle did not come this spring as normal.I have been feeling the effects of an imminant attack but touch wood nothing has broken out apart from one minor attack when I had forgotten my medication. Has anyone else had a similar experiance or am I just fooling myself that I may have found a cure ( by accident)?
john hewitt <HEWITT22@NTL.COM>
middlesbrough, england
Wednesday, September 05, 2001 at 09:11:35 (EDT)

I am Cluster Headache for 17 years.
Wangzhe <wangzhe0303.sina.com>
Beijing, China
Wednesday, September 05, 2001 at 01:44:29 (EDT)

My name is jason and I am 20, I have been getting these since iwas 16 and my cycle just started again adnd its misserable they come every year bout this time. And I now know I not alone at 3 am in tears punching my head. walking out side then goingto work and people say you look fine. thany you ch.come THank you
jason cox <jasonmisa1@aol.com>
St Paul, mn USA
Tuesday, September 04, 2001 at 22:46:15 (EDT)

I am a 46 year old female. Had my first bout in my early 20's. No-one knew what to do for me. Saw dentists - they ground down my teeth and pulled molars. The bouts came at the change of seasons (spring and fall) and lasted about 4 weeks each time. They eventually went away and never came back until 2 weeks ago. Over the years I had read about CHs and recognized the symptoms as what I had suffered from. I have just started on propranolol and imitrex nasal spray. Unfortunately, I can only "snort" imitrex twice a day and I get attacks about 6 times a day. The severity and number of attacks seems to be reduced since starting the propranolol, but the jury is still out, so to speak. Another problem I have is that I work night shift (I'm a nurse) and I cannot get a good stretch of sleep. Attacks wake me up starting about 2 hours after I go to bed. Thank God for this site. It seems to be a great resource! Thanks.
Julie DiRenzo <beingjulie@hotmail.com>
Audubon, NJ USA
Tuesday, September 04, 2001 at 21:23:10 (EDT)

Hello,My name is Joe.I have had Cluster migraine since I was 19..I will be 40 in 2 weeks.I used to get the 'cluster' every year for about 6-8 weeks,now the last 2 clusters have come every other year for about 3 mounths straight.Last week after a 14 hour long 'Cluster'I somehow made it to work and out of desperation I put in the 'keyword' section 'Cluster migraine headache' and came up with this sight...I now know I am NOT alone.I can honestly sat that these headaches have somewhat ruined my life.In 1991 when I went into a 'cluster' my Neurologist told me that Oxygen therpy was allowed for treatment again(I think he said that it was stopped in 1957)It helps-only helps,along with 3 medications which SOMETIMES help.I try to make it through this very very tough time in my life...NOW I KNOW WHERE TO GO!Thank you,Joe.
Joseph Peel <Dinovinyl@aol.com>
Bayonne, NJ USA
Tuesday, September 04, 2001 at 16:07:19 (EDT)

i am 46 years old i have had these for 20 years and still dont no what to take or what to do nobody seems to want to help or know what to do somebody must know please let me know thank you (joe)
joe stoops <stoops55@shawneelink.net>
newton, Illinois USA
Tuesday, September 04, 2001 at 01:14:44 (EDT)

I was beginning to worry that I was suffering from a "male headache". I just saw a neurologist for treatment for this horrid pain, and I believe that she's convinced herself that it's migraine. However, everything that I've read in regards to the cluster headache leads me to believe that this is in fact what ails me. For approximately 2 weeks straight every afternoon at 2:00 my left eyelid droops, my eye starts to water, and I begin to have facial tics. Does anyone else have those? I have yet to see that anywhere. I then get a sharp stabbing pain behind my left eye. The attacks usually last about 4 hours. Does this sound about right? Any help would be great, if it's not a cluster headache, I would sure like to know what it is. Thank you Sherri Thomson lesherri32@cs.com Idaho Falls, ID
SHERRI THOMSON <LESHERRI32@CS.COM>
IDAHO FALLS, ID USA
Monday, September 03, 2001 at 23:46:30 (EDT)

Hello I've often wondered what the effects are on long term sufferers like myself(29 years luckily 2 yrs between 2 month cycles)I know I could have gotten more accomplished in life if not for setbacks durning cycles, also over the years I've had over 100 hypo pain shots to hips, have taken lots of prescribed drugs that aren't good for you,and also feel that we endure much mental torture.I honestely believe that what we suffer after years of clusters is comparable to what other groups allready get disability for..I would appreciate hearing other views on long term efects of clusters!!!!Please Please Thanks Dale
Dale <dsoper@worldnet.att.net>
Brandon, sd USA
Monday, September 03, 2001 at 20:36:58 (EDT)

Please tell me i am not the only 32 year old female that suffers from this????
belinda rorke <ezrorke@aol.com>
seattle, wa USA
Monday, September 03, 2001 at 02:16:41 (EDT)

This is a great website. It is great to talk to people who know what you are going through. Especially when you're a women with a headache disorder that is common for men.
Andrea Moore <mopsmoma@netscape.net>
Overland Park, KS USA
Sunday, September 02, 2001 at 18:57:28 (EDT)

Hi everyone! Glad I found a place where there are others like me! So glad to know I'm not crazy. Anyone out there know a physician in the Raleigh area who is knowledgeable about clusters and will listen?
Will Graham <wgraham@nc.rr.com>
Raleigh, NC USA
Sunday, September 02, 2001 at 14:18:52 (EDT)

I'm glad I found this site. I'm at my wits end after 5 excruiating weeks of this cycle. I'm looking for any help I can get.
Nancy Kirchner <nkirchner@hotmail.com>
Westerville, OH USA
Sunday, September 02, 2001 at 12:09:21 (EDT)

I have suffered from cluster headaches for the past 15 years and have sought help from many different Doctors. Like most of you nothing has worked ; while visiting Florida last spring I purchased some natural products which works if applied within the first minute or two of an attack. Product name APR, Addresse: Jerald Klukow, P.O. Box 17692, Clearwater, FL 33762.
Lloyd <jlh@auracom.com>
Bridgewater, NS Canada
Sunday, September 02, 2001 at 09:25:52 (EDT)

I've been suffering from these headaches for a period of 15 years (once a year, a week to two at a time). They almost always awaken me during the night, every night.
Timothy P. Lewis <timplewis@altavista.com>
Fairfield, OH USA
Sunday, September 02, 2001 at 08:33:57 (EDT)

I have been dealing with cluster headaches for about 7 years now. Mine had started to happen for only a 4 week period during late summer with about 2-3 episodes a day. Now the periods are getting longer, this year I started to get them late spring and I am only into September, I figure I have another month or 2 to go, the episodes now happen anywhere from 2-6 times in a 24 hr period. Some days they occur at the same time like clockwork usually 10am, 3pm, 7pm, 2 am & 4am. The times they last are very inconsistent as well, some last only 20-30 minutes, however I have gotten 1-2 hour episodes that are killers, something new I have experienced as well, just when I think they are subsiding they come back at full force. I started on midrin, then to Immitrex(pills & nasal spray) and now am taking Zomig, NOTHING helps me, they just seem to go right through whatever i am taking. I am at a point of frustration, the pain unbearable at times, I dont know anymore where or when the next one will hit, I have to take days off from work because i am just soo wiped out from these battles. When i do get an episode I want to just be left alone in silence so i can deal with the pain in my own way, its very frustrating when I get them in a public place because i have no where to go to be alone, so i prefer to stay home when i am not working. These things are controlling me and becoming more and more painful and unbearable. I get them on the right side of my face, my teeth feel like they have been drilled with no novacaine, my right temple throbs, I sweat and hold my breathe, the right side of my noses clogs up totally and then all of a sudden will start to drip, my right eye tears up and latley the pain as become so intense that I cry, not liking that at all. The only thing i have found to relieve them a bit is to double over on the floor put as much pressure as i can on either my right eye or the temple area, sometimes it helps other times it seems to make it worse. Does anyone have any suggestions out there? A Dr. has told me to use an Oxygen tank in the past but i didnt think that would do me much good, especially when i get my attacks during the day as well when i am not home. I just hope this seasons attacks end soon, i dont know how much longer i can deal with them for this year. Thanks for listening to me vent. Bye
Todd <tjlev1967@aol.com>
freehold, nj USA
Sunday, September 02, 2001 at 07:54:32 (EDT)

my husben is taking esteroids 35 ml a day he has to drop 5 every week, what worries me is that he driks while he is taking the esteroids, what complications can he have? i will apreciate all th info you can hive me thanks. marianne
Marianne <merymossrochi@hotmail.com>
san salvador, El Salvador
Saturday, September 01, 2001 at 21:14:16 (EDT)

Well i went five years in remission,up to last week that is.Then without warning in the middle of the night my worst nightmare came true.There i was lying in bed, tears running out of my right eye,my nose was watering and i was sweating like crazy.Now a week later i am getting hit three times a day,Just like the last time I went through a cluster five years ago.Usually one around 9am,another around 9pm and another in the middle of the night.The only thing that makes me feal better is how good i feal when the pain stops,from one extreme to the next!!!!Anyway great site guys its nice to know i am not the only one out there dealing with the beast!
Derek Beitz <derekbeitz2@home.com>
Kelowna, bc Canada
Saturday, September 01, 2001 at 01:24:59 (EDT)

 

 

 


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