to DJ, Nancy, Jack, JohnB, Simon, AVE, LindaH, Greg, Margi, Maggie, BarbaraH, DougW, BobP, Drummer, Kip, Margaret, UELI, Elaine, PaulL, HUB, DougL, Todd....and all other...

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Help us fight Cluster Headaches! Visit the O.U.C.H. Website!

Posted by Riccardo ( on April 05, 2001 at 07:24:55:

I think this (long) may be nice to read from new and old comers.
These are the posts on the message board from April 1998 to June 1999….the first year of life of this site….. I have collected and give you … as is….
(sorry if I have forgotten some people….)
I hope you like this site as much as I think I'm gonna...
DJ Wichita, KS USA
Saturday, April 11, 1998 at 22:58:54 (EDT)

I have had clusters for 16yrs. But my clusters follow the Trigeminal Nerve in the face. I also have lots of swelling with mine, that not many people have.
Nancy Wichita, Ks USA
Friday, April 17, 1998 at 16:48:55 (EDT)

I am 48 and had my first bout with clusters at 21. My bouts are always 1 month long and my headache free period has always been at least a year and seems to have grown over time. My period between bouts is now up to 3 years. For the first ten years or so I did not know this thing had a name and I did not seek treatment. Since then I have used oxygen and verapamil with great success. I won't say it hasn't effected my life but I always coped by knowing that it would end in a few weeks. Now that I have found effective treatment it is a breeze. Keep the faith! Does anyone know if we outgrow this stuff and are we statistically more likely to develop cardiovascular problems( or is that just a function of the high prevalence of heavy smoking and drinking among cluster sufferers - I don't smoke or drink )
Jack Boyd Babylon, NY USA
Thursday, April 30, 1998 at 14:07:19 (EDT)

I have suffered from primary chronic cluster headaches for ten years now. "Chronic" means no remission periods. I am very pleased to have learned of this site.
John Bown Tucson, AZ USA
Friday, July 10, 1998 at 08:20:28 (EDT)

Finding this site is great. It has helped me realise that I am not alone. It seems that other people simply cannot understand the pain and depression I go through when I experience a bout of cluster headaches. It is reassuring to know that other people can understand what I am going through. I am fortunate enough not to suffer from clusters too often but would like to say what brings on my attacks: either acute anxiety and worry or uncovered "strip" lighting. I have experienced clusters when I have been extremely worried and anxious. Also I have experienced clusters when I have been doing close-up work under "strip" lighting with an absence of natural light. Maybe it has something to do with the flickering of the light. I don't know. All I do know is that if I avoid the trigger factors then I can avoid the clusters (I hope)!! Once again, your site is extremely useful and sheds light on what for me was a frightening and alienating situation.
Simon London, UK, UK
Thursday, July 30, 1998 at 12:24:38 (EDT)

Verapimil is really working for me, but it may just be a remission period. I'd like to visit again but first I'll read all the stuff above and see if my other symptoms are there too. O, and I'm a minority: a female.
Annemarie Netherlands
Friday, August 07, 1998 at 17:14:15 (EDT)

headaches are so bad I can't remember if I filled this out before or not. It really affects all my thinking. Have had these damnable C.H for 9 yrs. now and it feels like 90. What a horrendous way to live.
Linda Howell Red BLuff, Ca. USA
Thursday, September 17, 1998 at 17:52:20 (EDT)

I'm a physician in Chicago who has been suffering with clusters for over 12 years now. Wonderfull to find such a group of people...I can't wait to join your discussions. Feel free, any of you, to email me with medication/treatment questions. I don't have all the answers, but I have some...and a very sympathetic ear.
Greg Hill, MD Chicago, IL USA
Wednesday, September 16, 1998 at 14:17:14 (EDT)

My husband has suffered 20 years from these **&#&$&! CH. I found this site yesterday and started him on "Dr. Jerry's Water treatment" and also on inhaling pure oxygen last night. He has had his first good sleep in weeks and actually awoke pain free. He started another one this morning, but took two glasses of water and another hit of 02 and was able to go to work without the runny, droopy eye and crazed look about him. Try this combination, people, something's got to help. The medical doctors sure aren't helping us other than making us into zombies with all the side effects of the damn prescription meds. Perhaps if we unite as a group, we'll get some attention - you poor souls who are sufferers and those of us who support you. Let's work together.
Margi Caglary, AB Canada
Friday, October 30, 1998 at 11:27:01 (EST)

am in my second excruciating cluster, would really appreciate some handy hints on surviving the attacks 3-5 in 24 hrs. Thanks
Maggie Davidson England
Tuesday, October 06, 1998 at 15:05:03 (EDT)

I am a 55 year old woman who started having cluster headaches only six years ago and they've ruled my life until I will do anything to get rid of the pain. I've been lucky to find two doctors (partners) who both have this problem - one migranes and the other clusters. But I just found them after six years of looking. Hopefully, we'll start seeing some improvement in the very near future.
Barbara D Henderson Gladewater, tx USA
Tuesday, December 29, 1998 at 13:00:03 (EST)

Thanks for being here, wish I could have found this sort of info and support 23 years ago when they started. Good luck to all of us!!
douglas wright nanaimo, bc canada
Saturday, January 30, 1999 at 02:24:00 (EST)

Reading the two accounts on the home page of this site brought tears to my eyes. Tears not caused by the pain in the left side of my head but by the sympathy I have for the writers. I'm 48 years old and have "suffered" for 30 years. One or two bouts a year, 6 to 10 weeks per session, 2 to 3 headaches a day. Right now I'm in week four of my current cluster. I live on Verapimil, Ercaf and lidocaine nasal spray. Forget the not to exceed dosage. I'll take it till the circulation in my fingers and toes is completely gone if it lessens the pain. It's very comforting to read the accounts of other suffers and know I'm not alone. Tonite as I pray to the Lord that he gives me a decent nights sleep, I'll include each and every one of you. Hang tough.
bob pahlow San Luis Obispo, CA USA
Wednesday, January 06, 1999 at 13:23:17 (EST)

35 years old now. Don't know what "remission" is. 15 years of at least 1 cluster headache a day. Usually 2 or 3 a day every day since I was 20 years old. Taking Calan SR 3 times a day. Tried Lithium, felt like I was constantly on an elevator going up and down floors. Taking 3-6 Ercaf a day , 2 tablets at onset and one 15 minutes later. Tried prednisone but the prescription was ridiculous. 10 on the first day down to 5 by the 5th day. I was taking it constantly. How come I don't get a "remission"? Oxygen helps but so does breathing regular. Use to be a humorous and social person now I just want to be evil. Any suggestions on how to get rid of this incredible pain? Refuse to put a gun to my head......Thankyou.
dave rochester, ny USA
Friday, January 01, 1999 at 20:00:49 (EST)

thanks for helping my mother through her ch attacks . although i don't fully understand her pain i am trying to i also suffer from headaches ,i don't know if they are clusters but right now the left side of my face is numb and my eye hurts . that's all for right now good luck to you all!
b henderson(son of barbara d) somewhere, la USA
Monday, February 01, 1999 at 23:35:26 (EST)

What a great site!!! I am 59 and have lived with the beast since I can remember. Actually, thre are 2 beasts, 0ne above my left eye and the other above the right. The one on the right has been visiting now for the last 3 weeks and it's CHs are always 10s (the currently dormant left guy is mostly an 8). It awakens each night between midnight and 1 and slowly gnaws its way (with dull, tearing teeth) around my eye until it reaches my upper jaw. The journey takes from 45 minutes to an hour. If I am lucky, there is only one visit but usually there are 3 to 6. O2 is effetive only if taken in the 1st 10 minutes and I'm usually asleep trying to fight it off then. So its pace the floor, curse the darkness, kick the cat (poor cat) and contemplate suicide. But there's always tomorrow and maybe the episode will be over for a few months or even years. I too have gone through the med tests with clueless Drs. some of which made things worse. I have found that when in an episode, diet is extreemly improtant. I avoid like poison anything with Mono Sodium Glutamate. Also things like hot dogs (preservatives),parmesan cheese (naturally occuring MSG), perfumes and solvents (especially oil based paints). I'll be retiring the end of June and hopefully the life style change will bring some improvement. Maybe not. Painless nights to all..
Bob Kipple Jupiter, FL USA
Saturday, March 27, 1999 at 16:48:59 (EST)

I've had clusters since 1988. To date, I've not known another "real person" who experienced them. It's a comfort to me to know there are others. Though I am not currently in a cycle, it has been 15 1/2 months, and I'm starting to have "ghost clusters" off and on. Love this page! Thank You!
Margaret M.Godfrey Harper, KS USA
Friday, March 12, 1999 at 20:51:28 (EST)

Hello, I'm glad I've found this site. I'm a 62 year old male from Switzerland. My neuro calls me an 'atypical' case of a CH patient: I'm a late-comer, my first attacks were at the age of 56. I have some kind of 'hot spot' in my gums that I can feel with my tongue even when in remission. During a bout this hot spot is sometimes hurting a little for hours and then suddenly flares up within minutes to a full blast CH pain in my cheek. My first GP prescribed some aspirin-type painkillers and considered CH only for a minute, even he knew my sister had it for some years! Fortunately her retired and the new GP soon sent me to the neuro. It took him about 10 min to diagnose CH. He put me on verapamil (489 mg during a bout, half in-between). That one can have an oxygen tank at home, I had to tell him, he thought is was only available in hospital! When I take O2 at the first sign of an attack (when the 'hot spot' gets hot) all is over in about 10 min, I didn't have more than a 'two' in the past couple of years. In my current bout, since start of february, an attack starts within 1.5 h of laying down, whether sleeping or not. This kept me quite short of sleep, since I usually didn't bother to go to bed for a 4th time! For a week I'm now taking naratriptan (Amerge) before going to bed and this gives me a full ration of sleep and only a slight attack around breakfast time. - From what I read on this site, I am better off than most of you and I wish you all much success in your fight against this demon, Ueli.
Ulrich Nyffenegger Niedererlinsbach, SO Switzerland
Saturday, March 06, 1999 at 20:49:57 (EST)

I am a woman and have had cluster headaches for 18 years. They get so bad I just want to die. I have them at night and the only pace to go for help is the hospital. They treat me like I am a on drugs and want a fix. I gave up any hope six years ago. For some reason I looked this up on the web. I thought I was alone.
Johnnie Elaine Holloman Forest Park, Ga USA
Tuesday, April 27, 1999 at 19:08:40 (EDT)

This has to be one of the better sites that I've seen. Does anyone know of any comprehensive studies of CH that might point to a common cause? I'm two weeks into my cycle and prednisone helps but the side effects are not so good though. I know the answer to a cure is out there, we just haven't asked the right question yet!
Paul L. Syracuse, NY USA
Tuesday, April 06, 1999 at 13:51:32 (EDT)

I'm not really an emotional type though i can shed a well deserved tear now and then, but i gotta tell ya when i saw this sight i got a little not in my throat.
Phillip Hubbs shelbyville , in USA
Monday, May 24, 1999 at 12:28:09 (EDT)

i suffered from cluster headaches from about 20 years, i'm actually 46. no way to cure it..... the sequences are 2 months long, 4 attacks a night (and some during the day) I think this site is very important for all the people suffering from cluster headaches....thanks
Riccardo Pentenero Torino, Italy
Monday, May 03, 1999 at 10:30:57 (EDT)

hello everyone i have suffered with ch for about 12 yrs. i have seen all differant doctors and tryd dozens of treatments. my last cycle lasted about 9 monts with 3 or more headachs a day. i have been takeing verapimeal for yrs and now have started taking lithium. this combo seems to be the best by far. but, i started going to the tanning salon. within about 3 weeks my headachs went away. this last as long as i went every day. then i reach a small finacial slump and stoped going to the tanning salon. gess what my headachs came back. stoping going to the tanning salon was the only thig that i had done differant that i could think of that may cause the headachs to come back. so, i decided that the tanning salon was much cheeper than the drugs and did not make me have drug hangovers and went back. within 4 weeks my headachs went away. i now make shure that i go at least 3 times a week now and have only had a few stress induced ch. im now tanned and basicly headach free.
doug lutz new orleans, la USA
Monday, June 14, 1999 at 02:35:19 (EDT)

Thanks to all for a long-needed site and all the messages. 15 yr sufferer (onset at 30 y/o) with (typically) 4-6 wk bouts every 2-3 yrs. periods of remission seem to be getting longer and intensity and duration are either shortening or my pain tolerance is increasing. On the other hand, this started with 1/day and I am having 3-5/day during this current 3 wk old bout. First treated with Prednisone (virtually no effect), then Sansert (works fine, but takes 10-14 days to kick in and major heart attack risk after 6 months continuous usage). Currently on Imitrex tabs-the only thing in the world I fear more than CH are injections and could never inject myself. Had a sample Imitrex inhaler which worked good, as well as samples of Amerge, which is also by Glaxo-Welcome and made for those of us who don't respond to Imitrex. Okay, clinical details for those interested--right temple, with stabbing pain on back of right eye, often leading to pain in right molar area, similar to an abcess. Lasts anywhere from 10-60 minutes. Responds to Imitrex (usually) IF taken prior to onset of the severe pain. I get a 'warning sign' of increased pressure in the right temple that gives me about 2 minutes to take the meds.Alcohol will definitely trigger a CH, but only during an episode. During periods of remission, the only sensitivity I have to alcohol is that I get 'normal' headaches from more than 1 glass of red wine. Sulfite related?? Slightly higher tolerance to white wine. Well, thats enough site-hogging for me, I guess. Will gladly converse with anyone who wishes to email. Thanks again-so great to talk with folks who understand this and don't think I'm exaggerating about the intensity of the pain and the debilitating aspects of this affliction.
Todd Valentini Jacksonville, Fl USA
Thursday, June 10, 1999 at 09:05:17 (EDT)

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