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Below are the guestbook entries from March 2000. 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 thank you for this page its nice to know you are not the only one who suffers these awful headacheshelen <hell.cannon@virgin.net> hertforshire, England Friday, March 31, 2000 at 20:39:33 (EST)
I've suffered from something my doc called migraine for 27 years. Bouts now at two year intervals, expanding. Treatments useless. A collegue saw an article in a (womans) mag and diagnosed CH. Shocked to find this site and so many sufferers. Now due to see a specialist soon. Have tried to learn to deal with CH over the years, found that some foods really set off mine, alcohol of course, cheese, flavour enhancer, coffee. These not only set off an attack but would then lead to the next 18-24 hrs with a constant miserable head ( not heard anyone else mention this ). Does anyone ever shake this thing off?
Regards and best luck, daveh
Been there, done that. everything but surgerey, no thanks.
I was treated by the best at what they do-no help. Continued on my own research path- which showed two high percentage treaments which I concluded would be my treatment. Number one was the fact that oxygen is 80% effective is helping abort CH's. The second highest percentage treatment for women with CH's was the use of Ginger the effective rate was 50%, this is good! Anyway that you can get control of the cluster headaches is very, very good. So I did futher research on the most dramatically effective nutraceuticals that meet this criteria. I chose Zinaxin a natural standardized herbal extract. It's a product recommended by the world's liading nutritionist Dr. Earl Mindell, the author of the Vitamin Bible. I finally located the
zinaxin, took two softgel a day and in 10 days the CH's were gone. I had my life back. I stopped taking the Zinaxin and for a period of months I had no problems. Then guess what, I had the shadows. With this warning I jumpted on the Z again, two softgels a day. For a period of two days I had a few level three CH's. On the third day the SOB's were gone with the wind. Thank God! I know that people do things based on what they believe, and I surely believe that the Z works for me, without any side effects. I guess I tried the rest than I tried the best. Anyway, that's my partial story. you can reach me at nancycb@uswest.net
or my website at WWW.ezlife.freelife.com Peace!
Sufferer for 28 years and determined to find an answer!
No one can suffer such agony with out there being a cause!
I have tried many "things" to stop this "insane pain" and have recently tried something new. Will let everyone know if I have any form of relief.
i have bad headaches ooking for goodys powders if any can get the addy for goodys please email me thanks and anyone for support on hedaches email me
Just starting a bout, it's been 26 months since the last one. I have suffered from clusters for 20 yrs. Had horners close my right eye which has been corrected by surgery about 5 yrs ago. I have been taking verapamil, tried oxygen with little success. Ergostat use to work very well but can no longer find it.I have trouble sleeping and afraid to take cafergot. I tend to get very depressed during a bout and stay teary. I am very scared of CH and the last bout lasted 4 months. Any suggestions would be appreciated.
My name is Kevin, I've been suffer with Clusters for 14 years. Going through a cycle now I have anywhere from 6 to 8 a day. IM 35y/o feel about 85, haven't had full night sleep in 3 months. This is one of the longest cycles I think I have ever had. When I found this web site I got lump in my throat tears ran down my face, to think threes so many people going through this pain, the word (pain) is an understatement. I dot know if I should be happy I found this site or sad I happy in the since I found other folks that understand what I'm going through. I have been on every medication you can think of. IM now taking Sansert and oxygen this cycle I'm having now the Sanserts are not working, the oxygen is my like saver with out it I would have Committed suicide by now. The oxygen really works the Sansert did work very well before. This would stop CHs from coming on and even shorten the cycles. CH wake me up 3 to 4 times a night but the oxygen kick them in the ass most of the time every once in a while one will get out of hand then kills me, or send me to the ER. I wake up with shooting stabbing blinding pain that is in my right eye, my eye tears up and turns beet red and swollen, my nose runs and I start to hyperventilate the pain goes to the top of my throbbing head down the back of my neck. I scream and yell cry bang my head with my fist as herd as I can I pace back and forth. When CH gets so bad I rush to the hospital where they give me a shot and oxygen till its gone. My blood pressure goes sky high and my pulse jumps from 80 to 150, and the doctors stand there in amazement how bad the pain was and how fast it's gone away, and for the next 8 hours my whole head is very sore and tender from the CH. I lay back down to sleep just to wait for the next attack to hit me. These beasts are very hard on my whole family, they sit and just watch because there is nothing they can do to help me my family brings me ice cold wash rags for my neck. I get very short with them I don't like to be touched at all during a CH it seems to make my pain more intense. My neurologists sent me to have a CAT-SCAN and MRI but found nothing. My family doctor is a very nice guy he has been there through out it all and has really tried to help in every way possible with combination of medications now I'm getting ready to try Imitrex pills first if that don't work the injection are next. At this point in my life I'm willing to try anything, these CH have tried to ruin my life but I will not let it happen. Thank god for my family and loved ones. I was really upset to find there is so many of you having these NUCLEAR WARS in your head, maybe one day soon there will be a miracle cure for us all. Just wanted to say thanks to this site because I've learned about few new drugs I haven't tried like the Imitrex thanks again everyone. My prayers are with you all and your families God Bless.. Kevin McCartney
Well, it's about time I found something with this much information on "Cluster Busters" Have had them since 1973. Haven't had one in about five years until about a month ago. This last bunch was the most painful. Been 3-4 days since the last one. Finally, I can get some sleep now.
I have recently been diagnosed with cluster headaches.
It has been very debilitating to my life. I am interested
in everything that I can find out about this.
Hi, I'm not that new to the site,as I have posted here before. I'm not sure if I'm still allowed to now as I've been told it's likely that I have Chronic Paroxysmal Hemacrania, although I think it's similar to CH. Maybe it's part of the same "family" of headaches. Anyway, I'm glad I found this site as people have been really nice. If you're new, don't worry there are always people to help you. I would never have got as far as I have without this site. People mailed me with info and people I could contact directly to get help. We all suffer the same pain, so we can all stick together. At the end of the day, there's safety in numbers!
I have been visiting this site for several months now, printing out info for my boyfriend. He has chronic clusters and has for about 12 years. He doesn't have access to the internet, (yet) but asked me to post a message to everyone considering having surgery. He had the procedure done 2 years ago out of desperation, deciding that the chance to rid himself of the pain was worth the risks involved. Fortunately he came through it without any serious side effects, except for the permanent loss of feeling on the left side of his face, but the relief was very short-lived. The headaches came back. He knows some people have had success with this procedure, but hopes that everyone that considers it thinks it over carefully before making that decision.
Hang in there everyone.
Hey Guys,
I'm not sure if I belong here or not. The doctors cannot figure out what is causing my headaches. They range from dull pain on the left temple which is continuous for hours to a sharp pain in the right temple that will bring tears to the eyes and stop you from doing anything else. They are sending me for a brain MRI on monday. They prescibed Amitriptylin for me to try. I don't want to start taking anti-depressants for my headaches. I'm not depressed! I just want to know what is causing them so I can make them go away! I feel so helpless sometimes because nothing seems to work on them. Is this normal? I would like any feedback that anyone can give.
Thanks,
Another new clusterhead
I have just started to get these pains recently. I am 26
years old and my Dr. is at a loss. I have a MRI in a few
days and after reading this site I am pretty sure that this
is what I have.Thanks for all the info. I will wait for the
reading of the MRI of course but at least now I am armed
with information for my DR. Good luck to everyone.
I have recently purchased a computer with access to the Internet. One of the first things I searched for was on CH. I was hoping to find some miracle that this wonderful technology would expose to me. Not to be, my doctors are doing for me what appear to be the typical drugs.
On a head-banging note…I have found a technique that gives me about ten minutes of relief while waiting for my Ercaff to take effect. I get in the shower with the water pointer only at my scalp. Gradually turn off he cold water until the water temperature is close to scalding…the closer the better. After holding the hottest temperature for a couple of minutes, turn off the hot and turn on the cold. This works exceptionally well for me because my bouts come in February or March when the water is cold.
I am having the longest encounter in twenty some years (seven weeks). My Doc has raised my Depakote to 1000mg two times a day. I was on steroids for three days. The CH lifted during that time but returned immediately after going off the steroids. He doesn’t seem to want to put me back on the steroids. Has anyone else had luck with this much Depakote? Now I must get blood work done!
I live in the Seattle area, and have lived in other parts of the country also. I suffer about one series of clusters a year, and sometimes skip several years. The worst problem for me, other than the pain, is that it completely disrupts my work (computer programming) and sometimes I don't know how sympathetic my employer will be.
I have a theory that it is related to light and the changing of seasons.
Is there anybody in the Seattle area that would like to talk or email tips for handling this monster, please let me know.
I refer to taking a "Natural Vitamin"-This is Natural Vitamin E.
I had clusters from about age 20 to 40. I used ergotamine inhalers,suppositories,codiene tablets,etc. A pharmacist friend suggested I try Vitamin E. It may be a coincidence or I may have outgrown them, but I have not had a headache since then and that was twenty-five years ago. I take one 400 Natural Vitamin tablet each morning.
I have recently been diagnosed with cluster headaches.I have had these headaches for years. I also have had heart by-pass surgery and my doctor tells me I can't tale most of the meds for these headaches. My doctor has not been very responsive with this problem. Anyone have any ideas ?
Thanks, Tim
It took me 45 minutes to complete this entry because I had an attack right as I started. I'm 28 years old. I don't smoke. I don't drink. I've tried everything: Imitrex, Toradol, Amitriptyline, Fioricet, Tylenol with Codeine, Excedrin Migraine, 2000mg Extra Strength Tylenol (yes 2000 at one time), Motrin (every strength available) and I'm still suffering. It's extremely hard because I have two small children (ages 7 and 3 months) I've been getting these attacks for almost a year and I'm almost suicidal. This is a great site. It's good to see that I'm not the only person in the world looking for a building to jump off during one of these attacks.
I'm searching for a professional neurogolist who is specialized for cluster headaches in Miami.
Can anyone give me a hint?
Thanks very much!
Uli Petzold
I'm searching for a professional neurogolist who is specialized for cluster headaches in Miami.
Can anyone give me a hint?
Thanks very much!
Uli Petzold
Does any body get a lump in there neck when your having an attack?
This sucks!
Hi to all of you out there. My name is Kathy. I am 42 years old and have been suffering since I was 19. The first headache I ever had was in my college dorm bathroom. I thought I had a brain tumor or something and was sure to die. Since then, many times, I have wished I would die. The pain, which here, I do not have to describe, is enough to wish it so. But there is more, isn't there? The ruination of all your hard work on the outside, the setbacks, the wasted time. The knowing you have to start over and rebuild from near ashes, what you have already built before. I cried so hard when I found this site. It confirmed for me, and for a friend, that I am not a baby, or delusional, or a hypocondriac...after decades of suffering and starting over, at least I am now sure that it's not my fault. The weight that has lifted is impossible to describe. Guilt can be as debilitating as anything to do with a cluster headache in my book. Thank you God, for helping me, finally, hope. I pray to find comfort here, and also offer it..
Gone thru My first year with clusters,
this site is just great. I,ve had CH for 20years. So far nothing has worked to stop them. Also I've never met anyone who has them,anyone in this area please e-mail.
I'm a 34 y/o female. I've been suffering from debilitating headaches for the past 18 months but they were just diagnosed less than a week ago as clusters. I'm in the middle of an attack now that has been going strong for 2 weeks. Some have gone as long as 8 weeks. I'm new to all of this and have no idea what I'm up against, what to do, etc. I landed in the ER last week. They gave me a shot of Toridol and sent me home with Darvocet. The HA was back 24 hours later after the Toridol injection and the Darvocet isn't working. I feel like I'm in the middle of a vicious circle. If I don't take the darvocet, I'm on the floor bawling. If I do and it takes the edge off the pain, I can't function because of the effects of the darvocet. I'm a single mom with no family here, so I have nobody around to help me out when I'm having an attack. I still have to work, hold the fort down and be a mom. I believe I'm going to be referred to a neurologist next week. All I can figure right now is that the attacks are either brought on by stress or change in season. Once they ease off, I can go 3 or 4 months before another one hits and they seem to get worse with each attack. If I sound desperate, it's because I am. I don't know how to deal with this and keep up with life at the same time.
Hi,
Stumbled across this site asking another site for help with ideas for my headaches. As you all say, its nice to know I'm not alone.
I've had CH for over 30 years, have tried pretty much everything out there. Imitrex works but discovered the hard way there are long term side effects. I'm now on a search for the right combination of herbs. I've tried all the usual stuff. Anybody have any ideas? i'm glad this site is here!!!!!
Just Wondering what far out things people have tried to get relief from their cluster headaches. Can anybody top getting a high colonic??????????? Or getting flogged at the Russian Baths in NYC?????
I would like to find out if there is anything new for the treatment of cluster headaches
I am 29yo female,don't smoke, ocassional drink, been suffering from CH for 9 years. I get a year break here and there. I have only been diagnosed for 2 years, so the others were quite unbearable with out treatment. I thought they were sinus headaches so I would hang my head over a boil pot of water,breathing in the steam, I think it did more to relax me. What works for me, I swallow 2mg sublingual tab of Ergomar(ergotamine) everynight before I go to bed. Takes about a week to build up in the system. After I am headache free for about 3 weeks I tapper down. I also take 10mg of Nortryptyline to break the sleep pattern,( deeper sleep). I am a 3rd year pharmacy student so I am well informed about the therapies available, both abortive and preventative. Thanks this is a great site, before visiting, I thought I was the only female out their in the world with these things. It would be interesting to know the traits of other women suffering from these HA, I have always thought I had a little extra Testosterone in my system. I am pretty outgoing and hard driven, don't smoke ( live with a smoker all my life)don't drink but a glass of wine now and then. I like to hike, snowski, golf etc. and damn it my face still breaks out at the age of 29, not too bad just annoying! Great site....Keri
Here is another female with cluster headackes, I started haveing them when I was 16. Have tried all kinds of medicines from different Doctors, and none where of much help. Been with out a headacke for 3 yrs. Now they are back. Was really happy to find your web site. And read about the new information. Prehaps I can get some help with the new treatment. Best to all Gayle
I have yet to meet another female with cluster headaches, I was seen at Duke
hospital...years ago...and diagnosed with cluster headaches, but was told that
it was a mans headache...I have met several men with these headaches but no
women...I have suffered since I was 18...and only in the last few years have
found relief with Imitrex (injections)...which will get rid of the headache
in about 5 min...
I'm not positive what I'm suffering are cluster headaches, but it sounds right. I had 4 or 5 attacks 9 or so years ago and haven't had any since, until now. I've had 5 attacks in the last 7 days, all, seemingly, triggered by alcohol.
Had a CH when I signed last time and left the wrong e-mail address. Here's the right one. Would love to hear from someone that is experiencing the same thing I have been going through for so long
Thanks, Chris
Hi all I too suffer from clusters and have been for over 20 yrs now.
I have mine sometimes 2 34 day periods, some times 2 times a day and
belive me I know how you all feel. Everytime I go see a doctor I feel
I feel like I m talking to a wall. I keep telling him I need something
for the pain if ya have no cure. But thats spitting in the wind. So now
I have decided to just deal with the pain til they have a cure for it
then to keep paying them money for something that will work one time and
not the next time.
For the past few years I have had intense head-aches that have always been my worse enemy, I went to the doctor and he wrote me a prescription but nothing else was done. Since then I have not been back and I find that excederin Migraine works better than the prescription that he wrote me. It is a royal pain in the neck knowing that there is nothing I can do to relieve my pain except to pop a pill.
I have been a CH sufferer for 20 years. I have been to so many doctors and spent so much money just to have them tell me I have Migraines, Sinus Headaches and what not that I had finally given up hope and just decided to live with the pain. Suicide has crossed my thoughts many times as I beat my head against the wall in the middle of the night. The pain is so excrutiating in the middle of the night when all you want to do is go back to sleep. The doctors have never perscribed anything above 800mg. Ibuprofen to me so I have never tried any of the medication I was just reading about. My friends and my family don't understand how much pain is involved with these headaches and just think I am a wimp. Not only do they occur in the middle of the night (12:30 to 1:00) but I also get them during the day. These headaches are debilitating to me. If I am driving and get one, I have to pull off the road and just ride out the pain, sometimes lasting up to 5 hours. I do alot of traveling for my daughters softball team and it scares me to be on the road for long trips with just my 11 year old and myself. I am really glad to see there are other sufferers like me and finally to have figured out what this beast in my head is all about. To all of you CH sufferers - my heart goes out to you.
Talking about headaches gives me a headache...but reading about them makes me feel good! I'm glad I found this site. I've been doing the dance for 27 yrs. I feel for all you fellow sufferers. I'm in the midst of the worst bout of my life...4 a day now...waiting for the next one any minute. Wish me luck.
Mark
This site is fantastic! I have been a CH sufferer for 5 years (I'm 23)and now know that I'm not alone!! No-one seems to understand the pain that I go through with these headaches and I've been reading this saying to myself - My God - that's exactly what I feel like! It's brought me to tears!
No drug I've had so far has been able to help though - I'm trying to find out if I can get Imitrex in the UK. Does anyone know if I can??
I've been a cluster headache sufferer for about 20 years now and have gotten them routinely about every 22 to 23 months, and they last 4 or 5 months. This is the first time I've ever entered information on the web. I want to say that I, with the help of my physician, thank that I have eradicated the headaches FOR GOOD.
i've been a ch suffer for 22 yrs.i found this site yest.researchinh headaches,since i was heading to doctor again.u dont know what it means to me to find others out there with the same pain an emotions we go through when in are cycles.nobody understands ch around here u tell them an they say,oh just a migrane huh,little do they know.Thank god i've found people out there that understand.Every thing i've read in here i could swear they were righting about me.this has now become my home page.well time to go take more meds.later.
tlc
Holy Guacamole! It's a real CH site! Good job!
I feel I need to express how moved I was to have read some of the comments on this page: finally, it seems that my headaches are by no means idiosyncratic pains, but a syndrome which is shared by so many of you around the world!
I'm a 21-year-old male student. I'm a relatively new [righ-hand-sided] suffer: some 24 months or so, now. The neurologist has me on propranolol, pizotifen, imigran, and brufen. Unfortunately, the ergotamine medihalers were taken off the market here in NZ some months ago ... its taste I shall never miss! I also use spearmint and tiger balm. I've tried reiki, but alas, to no apparent effect.
The cycle I'm in at the moment is about two weeks old, and is highly patterend: some two or three "shadows" during the day with a headache waking me at around 4 or 5am. The cycles usually only last for three or four weeks ... I'm really hanging out for its end!
Anyway, once again, I'm so glad to have found this site, and wish the very best to all of you "clusterheads" out there!
i have suffered from these headaches for 5 years. i have had some real bad times with them but i now am using oxygen
I am into my 8th month of CH this goround. My first cluster was 5 yrs. ago. It only lasted one month and then went away. This time, if it wasn't for STADOL NS I would have lost my sanity.
I can CURE your cluster headaches in three weeks! After 12 years of chronic torture that is what a chiropractor told me. Three weeks later they left and haven't been back for over a year now. Not one tiny bit. No drugs. One 5 min. visit per week to the chiro. teaching my spine to stay in line. Not all chiro. know how. Shop around. Cluster headaches have to do with spinal misalignment. I am an engineer. I deal with facts, not fiction. My chiropractor can cure cluster headaches. He has cured many. I know you don't believe this, but what choice do you have? Find the right chiropractor. My gift to you. Fact: I am CURED.
My husband is a CH suffered and has been for the last 17 years. He's close to 50 now. I am sitting here at work with tears running down my face from reading the messages on this site. Bill is in a cycle right now and has been for nearly two months. The only thing he has ever found that has helped is oxygen, and now even that isn't helping as much as it used to. Is it possible to build up such a tolerance for oxygen that it stops helping? He has multiple headaches every day; sometimes it's like his whole day is one long headache. Fortunately he owns his own business so his "boss" is very understanding. I am just so helpless. I pray and pray that it would be me, not him; that God would just make these things stop. It's good to find a "family" -- people who really understand what the suffering is really like, and also understand what it's like to be the helpless mate of a sufferer. Thank you for being here.
What a site, glad to have found it, more informatio here than I have ever seen on CH. I am a 41 year old male in the 3rd week of my latest cycle. I have had CH's since I was 13 years old. I was not diagnosed with CH, until 1994, but now I know that it has be CH all along. When I first started having the "bad headaches" at 13 I was told they were migraines, sinus infection, eye strain, ect, you know the story. Through my teens and into my early twentys the beast would come and go, I would go to the Dr. always to be told the same thing, you are having migraines and there is not a lot we can do about them. Migraines run on my Mother and Fathers side of the family. In my late 20's to early 30's I started noticeing a pattern, about every 3 years the beast would come for about 3 months and visit almost dailey, lasting for 30-60 minutes, with crazed fits of screaming, yelling, head banging and pacing. In 1994 the pattern changed to a 2 year cycle, getting more intense with longer crazed fits, and having more in a day. During this cycle they are lasting even longer up to 2 hours and having as many as 4-5 a day at times. In the past I have had 2 cat scans, MRI's, EEG's,and all come out fine. I have taken more med's over the years than I can recall the names of, with out any relief. Used enough hot water running over my head and neck to float the Titinic(which in the past has helped as much as anything, but is not working as well this time). Last week I was prescribed Amerge, with a little bit of help, if I could beat the beast to the punch, if not lets start dancing to the music. Yesterday I was prescribed Migranol nasal spray. At 3 a.m. this morning the beast come for a visit, after a blast for each nostral, a baggy of ice on the head and 15 minutes he started to leave. (Shortest one I can ever remember after going full bore.) Maybe this will work, lets hope so, I have been fooled before.
It is somewhat comforting to know that I am not alone in my pain that is hard for anyone to understand who has not experienced the agony. Has anyone every heard of anybody who has been cured of this horrible affliction, if so please let me know. I wish the best to every one in their search for a cure.
I am a 32 yr. old female. I have suffered for 11 years. When I first found this site I started crying. My dad called and I started explaining that I had had the headaches last night and that I had found this site. He said why are you crying are you in pain now? No I said It is just so wonderful to know there are others out there I have felt so alon for so long.
Last night I awoke with the first minor cluster I've had in two years. Got up and decided to search the internet and found this site. Thank God for the internet. I've suffered for over 30 yeas now and thought maybe I'd outgrown the episodes only to have a new one now starting!
I've done it all, taken everything imaginable, had every test known to man, even agreed to have the surgury that used to be recommended (total witchcraft)!! Found Dr. Seymore Diamond in Chicago, one of the most compassionate men ever to have lived. It's been two years since my last episode and wonder if there has been any significant breakthru in treatment? What is DV? Does it work for everyone? Anyone know if a good doctor in the Dallas, TX area? Any help would be greatly appreciated.
Thanks for being here. I think I've found a new home on the internet. This site my be a godsend!!
My husband has been recently diagnosed with cluster headaches. We are having a hard time getting non-cluster headache people to understand what was happening with him (especially at his job), when we hardly knew ourselves. This website has given us a lot of infomation and possible medications that we will talk over with his doctor. Thanks!
Brenda from Madison, Wi.
I have ben trying to e - mail you
You must have entered the rong e-mail add.
E-mail me back
I'm lucky enough to not have this problem however my husband does. He started about 1975 and thought he was having sinus problems. He wasn't diagnosed until 1980 and they used a combination of sansert and prednisone. He got the headaches every other year and they lasted about a month. I have never seen him in so much pain. I've seen him cry, bang his head, he has even begged me to hit him on the back of the neck but I never do it hard enough for him. The last attack he had was in 1994 I think. I thought they were gone for good. He would only get 1 or 2 headaches in a day. They are back with a vengence. He is getting 4 to 6 headaches a day and is totally incapacitated. It's so hard watching him suffer. The doctor has him on prednisone but says sansert is no longer on the market (does anyone know if this is true). he was on barbitul which flipped him out but didn't help the pain. now they are trying something new. Oxygen helped the other day at the doctor's office along with a shot but that doesn't help us here at home. Not only is he suffering unbearably but the prednisone is having an effect on his personality. He's beginning to think I'm the enemy and all I want to do is help him. Any suggestions are welcome. I'm starting to bang my own head for lack of answers.
Clusters started at age 53. Frequency ranges from nine months to 20 months. Average length of cluster is 25 days with 2AM being most frequent time. Last 20-30 minutes and are always behind left eye. Imitrix pill does not help since the headache always subsides within 30 minutes, whether I take the pill or not. Feeling of euphoria after headache subsides! Had them in July, December, March and October, so seasonal cause does not fit.
I have been getting chronic cluster headaches for about 15yrs.
now, and I don't see any end in sight! I have been all around
the USA to see all kinds of doctors, and they all tell me
the same thing, that I have chronic CHs.
The bad thing about CCHs is that you just never know when a
headache is coming. It's like being hit in the back of the
neck with a baseball bat, and from their, it travels right
through your head to behind your eye. Then it really starts
to increase in pain level. The worse part is, it could last
for 45min. or as long as a couple of days. It all depends on
what triggered it, and how fast you could get some pain killers
in you. If you don't get something in the first 10 or 15 min.
you probably won't be able to stop it.
Hello!i am 20yrs.old and have had a constant headache,Non-stop, Day and night for the past 10 months! I have no idea what i have,have had CTscans,MRI,about 10 different blood tests and variuos other tests throughout the rest of my body and nothing has been found!!I am not able to do my full time job.
I have yet to meet or even here of a person who has had a headache as long as I have(constant), but I KNOW I'm not alone and am not the first person to get whatever I have. So if someone has what i've got or knows of someone who does, any info. would be so greatly appreciated.
Thank you!
I've been on the site for awhile now on and off, but I'm looking for some fellow Texans and Dallasites to have a pity party and chat with. My CH have gone from episodic to chronic and now the frequency and intensity are going off the charts - I just need to know someone else who totally understands is out there!! Thanks for giving me my little soap box - looking forward to getting in touch.
LuLu
iv,e been suffering for a year now,cant find a medicine that will help.this is the worst pain iv,eveeer been through,any information ion medication will help.thank you,
Thank you, thank you, thank you!! Finally a site I can go to for information.
I am the sister of a cluster headache sufferer. I got one ONCE when I was 12.
I am 36 yrs old and my sister is 35. My father had cluster headaches and died
having one (he was an alcoholic). I've been told that my brother also sufferred
a few episodes over the years. My 35 yr old sister gets about 2 episodes a year
lasting 1-3 months each. Now that I found this site I will be forwarding the information
to her. If it weren't for her husband being with her throughout all her episodes
I don't know what would have happened to her by now.
what a wonderful website! I never knew there were so many cluster headache sufferers out there! thanks for answering my questions and being there for me
THE WEBSITE IS A WONDERFULL YHING FOR THOSE WITH CLUSTERS, I HOPE WE ALL SIGN IN AND COMMUNICATE, IT HELPS.
well i'm my 6th week now ! wish i had found this site sooner
doc. has me on verapamil/ ercaf tab / predisone . have had this problen for all most twenty years and i want to die. the meds are not working as well as they did over the years
it's about 11:20 pm and i don;t want to go to bed had my worst attack on 3/13/00 than i ever had over the years did not have another attack until last night but my head has hurt all week if this dose not end soon i don't know what i'm going to do i really can't take any more .just thank god there not 2 times aday everyday any more think this term is about over but you never now 7 weeks every other time 2 more weeks to go than i get a break until next january. the thing that make the worst is people think it is just a headache and it will pass with a asprin well thats a joke. as you all know!!!!!!!!!!!
Thanks - I'm NOT alone. I'm 26 and have been having CH's since I was about 19. They weren't diagnosed till I was about 22. Too many trips to the Docs & the dentist, eventually they sent me to a specialist who told me what they were after about 10 minutes. I just thought I'd leave this message for you all to say "I'm here & I'm one of you!!!" Signing off - Mail Me !! Bye G.
I have just found this site and have found an enormous amount of information. I have been having ch's for 5 yrs now, only diagnosed last year. My major weapon has been the nasal spray imitrex, If anyone knows or has tried prednisone as a cycle breaker, I'd be interested in knowing the results. I am currently searching for an MD who has proper knowledge of treating my ch's. Good luck to all and hopefully perhaps a few good night sleeps.
I got a computer just to search this web site. My husband and I we're at a party last year and a women told me about this web site. I am shocked to see all the people who suffer from cluster headaches! I always thought I was alone and no one ever fully understood what I was going through. I started getting clusters when I was about 12 years old and have had them for about 28 years! My parents took me to every doctor there was, they could not find anything wrong with me. My mother started reading articles on headaches when I was about 14 and told me to read this article, she said that it sounded like exactly what I had. I usually got them they same time each time in the summer and they would take on a pattern of every other night, I would wake up 2 to 3, sometimes 4 times out of a sound sleep and before I would even get the cluster, I would feel it coming on and i would feel sick to my stomach and want to die the pain was so bad, only to go away after 15 - 30 minutes, sometimes longer and then i would fall asleep and a hour later it would all start over again. This would happen for usually a month and then dissapear for 2 years. When I had my daughter 5 years ago, I didn't get one for 4 years and thought they had gone away for good, but no such luck, the end of the summer of 1998, They came back, this time, they we're the worst, lasted for 6 weeks, I got them every night and even during the day which was rare for me unless I was out in the sun all day during my cluster period. I had tried in the past, prednisone, sansort (sp) and oxygen and this last time imitrex which appears to be very popular. Unfortunately, nothing has worked for me. And I don't know if it is me, but they we're the worst this last time and I am not sure if imitrex can make them worst? I am at my wits end, and i don't get them as often as i see many of you do! I am due for them either this summer or next and keep hoping for a miracle. My biggest fear is that the next time i get them they will never go away! I will then be suicidal. Now that I bored you all, any suggestions!
Thanks! My headaches are episodic; I seem to get them for 2-3 months every 2 years or so. These episodes can vary in terms of severity, but they always start at my left temple or above my left eye. Mostly, I've just tolerated them for the last 12 years since college. My last episode 2 years ago was pretty bad. It put me out of work for a couple of weeks. I finally went to see a doctor and he put me on Imitrex which made me feel worse. I've just started a new comparatively mild episode which seems to have been triggered by some dental work on my upper left side. Thanks for the chance to vent a little.
Hello everyone, I'm the wife of a ch suffer. Unlike most people Eddies headaches have not cycled. He started in feb.98 and they are to the point where he is at migraine level all the time plus he peaks about 10 times a day. I'm trying to find information that links head traumas to cluster headaches If there is anyone out there that has seen this info please e=mail me. I've seen it but can't find my way back to it. Eddie has been in pain a very long time and he has tried just about every medicine there is. Thanks for any help . Debra
Well, I had no idea that there were so many others out there with cluster headaches. I guess like most all of you, I too was just surfing the internet for answers. After reading many of these short letters, I too feel compelled to tell my story so I can pass along what has worked for me. I started getting cluster headaches in Dec of 1991. They lasted about two months and cost me my job...It wasnt a very good job anyway and probably started this whole cluster headache thing. My wife, then Girlfriend, would drive me to the emergency room where I would get a shot of DHE Something and I wouldnt wake up for about 30 hours...and when I did I would be rushing back to the hospital to have them take the ice pick out of my skull. This went on for several months and the headaches went away..
Well, I guess I should say Im lucky because my headaches didnt come back for seven years. Last winter, they did come back and I was prescribed Imitrex for the pain (That has been a life saver) My headache is usually gone within 5-10 min. I was recently prescribed oxygen and that seems to work but takes a little longer to take effect..I am still trying to learn to be patient and let the oxygen start working but I guess I'm a wimp when it comes to cluster headaches. I have tried a variety of medications to break the cycle but nothing's worked yet. My fingers are crossed. Good luck to all of you who suffer with these damn headaches too.
I'm really excited about finding this website for cluster headaches. I am a clusterhead!!
This is the first time I have ever looked for or found a place devoted to cluster headaches. Most of the people I know don't suffer from them and can only tell me they feel bad for me. Most of the doctors I have gone to over the years seem clueless.
I started getting these headaches when I was approx 15. They would come on everyday like clockwork. This lasted until I was in my 20's. At that time our family "doctor" said I got headaches because I was young and somewhat aggressive. As I got older, the headaches spaced themselves out. I would go through bouts for a month or so then they would dissappear for almost a year. That has been the pattern to present. I am now 45.
I have had brain scans and head x-rays done. I have tried sansert and ergotamine tartrate. Nothing so far seems to have worked. As a result I stopped going to doctors 10 to 15 years ago. When another attack starts, I just "bang my head"(litterally) for a couple of weeks or so until I win.
I'm not sure what I hope to accomplish by typing this, but I have a genuine sympathy for anyone going through a bout with cluster headaches. I am not a weak man nor am I afraid to face pain, (I hold the rank of 2nd degree black belt in karate, I know hurt), but any pain that that make me punch my own head for almost an hour during an attack or even at times cause me to consider suicide as a viable means of pain relief is fairly nasty pain.
Thanks for the space and the site.
Hello fellow suffers, im a 14yr. CH(monster) suffer, I already have a two message out here so i wont bore you with more of my painful story's.. I just have question??? My ch come every year like clock work, and last yr. i had one of the most Worst cycles i have ever had, it lasted long them most, BUT!!!! this yr. at the same time of year nothing then nothing and nothing well finlly they came but there not hard to stop 5 min. with oxygen gone i did get a refill on my sansert to shorten cycle. Oh yeah my questions have any of you had a easy cycle this year im just so happy these mother****** have pasted me by this year. Dont want y'all to get the wrong idea about me joking around about these monster but i feel ive payed my dues and i know there not gone for good :( but im happy there nbot here now that all.. And im hoping you all are having the same luck as me this yr.. some one told me 2000 was going to be a good yr. hey I know way i dont have them this year Y2K bug melt down.. Well hope yall had the same melt down as me.. I really feel deaply in side about CH and the peolpe that suffer from them I do cry when i read the storys on this site. I cried like a girl the night i found this site it very sad that we have to give up our lives for for these CH. Hope your all have a mellow yr as me and good luck to yall!!!
Kevin
I'm 37 and have had cluster headaches for about 20 years. The clusters seem to be getting longer now, the last one lasted 3 months and I'm six weeks into the current one. At this point I'm so tired from being up at night in excruciating pain, feel sick from taking so much percoset and cafergot and lidocaine that I want to try something different. I called my doctor and got a prescription for Imitrex nasal spray. Unfortunately, I didn't work for me. My doctor suggested a massive dose of cortizone to try to stop the cluster all together. Has anyone ever tried this and could you tell me whether it worked or not. I'm not really thrilled about trying steroids but at this point it can't be any more damaging than the massive doses of the other med's I'm taking. This is a one time shot to try to end the cycle, not a daily dose for each headache. I'd appreciate it if anyone who has tried it could let me know how they made out. Thanks
I have had cluster migraines for almost 13 years. I am a 37 year old female. I am tired of the pain, the constant hour upon hour,day to day, pain...that sometimes last from 2 to 3 hours all the way to 5 to 6 days.
Open for suggestions....I need help.
I am 50 year old male with cluster headaches and I think this is my third cycle. I am lucky to have them about every five years. They last about 4 to five weeks. The last cycle I took sansert as a preventative and it worked but this episode my doctor said it had too many side effects and put me on prednisolone. This seemed to help a great deal but could only be on it for about 5 days. It did seem to lessen the frequency and severity of the ch's, but think I could have been on a lesser dose for a longer period of time and would have been much better. Immitrex tablets were prescribed for the bad one's, but seemed to take too long to "kick in" . If I take them at first sign and also put ice behind my ear and side of my head , the combo seems to work. One thing I did notice this episode was I cannot tollerate any alcohol. One drink triggers a bad one.
I have no idea how someone lives with a chronic CH with only a couple of days of relief at a time. I thought I had it bad!!
What a relief to find this website. I am not alone!!
I got my first cluster in 1991 at age 22. My clusters happen every two years, usually in the fall. The headaches usually wake me at 4am at 8-10 on the Kip scale. They follow the classic pattern of lower intensity start, increasing intensity and frequency (up to 3 per day) by the end until the cycle burns itself out. That takes 4-5 weeks. Though I have no "headache" in between I feel miserable. I am, therefore, out of commission as long as the cluster lasts. Last year I tried nasal Imitrex. It broke the bank but offered relief from the most intense pain. That is invaluable to me.
Next year is my cluster year, and dread consumes me at the thought already. I will have 2 small children by then, and have no idea how I could cope through a cluster. I am therefore grateful to read about all the treatment options out there. I am even more interested in prevention.
I am interested to know if anyone out there also has common migraines as I do. I also have Raynaud's syndrome. These two have recently been linked to a bacteria called Helicobater Pylori. Could there be a link to clusters too? I would love to hear from anyone who shares my symptoms to brainstorm :-} with about this possibility.
I am a 30 year old male who has suffered from Cluster headaches for about
2 1/2 years. I have tried quite of few drugs, seen doctors and I am now
looking for alternatives to help treat this disease, and I think of it as a
disease. Thanks.
From a 23year old on 100 asprin a day (I didn,t know)
to a 38year old and still learning,I know what pain is to
the point that,(if you suffer you know)but this is for my long suffering family.To my Wife and my girls,You are my rock,and allways keep me sane.I can never repay you for the kindness and understanding you all show.I love you now and allways.Ivan.B 14.3.00
I get very, very intense headaches and nothing seems to work. I have be to numerous DR's and they give me pain meds and was like taking candy.
I am about to go to the headache and pain center, because I can't take much more.
Hi there guys, you have no idea how great it is to see you other sufferers. I have suffered since 13 now 35 and went until 21 until I was diagnosed. As you can imagine I have been diagnosed with everything from sinus problems to brain tumors. I can concur with all the others who get no sympathy from non sufferers - is it just me or are the "well I get migraine as well" types the worst.
All the Best
Nick B
atlast I have found people who suffer the same hell as mine,
Ihave been through all the problems encountered with doctors
not understanding the symptoms,my all time classic was to be told that I was under stress.This was after recieving the results of a medical check at the same clinic telling me that I had slightly low blood pressure and my colestol level was perfect!!! The doctor then told me after I had informed of the test results that I must be imagining the pain.
I have suffered from cluster haedaches for ten years now and only in the last three years have made any real progress in treatment.
I have just entered a cycle of clusters and I am taking a daily dose of AMITRIPYLINE (25mg)this has so far been the most successfull at putting the attacks into remission for spells of about six months.My main worry is that as the years go by the attacks are more frequent and the cycles last longer, this time I have had to double the dose to 50 mgs to bring the attacks under control.
Looking on the positive side ,because the problems of the problems related to this,lack of sleep,failure to arrive on time for work etc I ended up working for myself so as to suite my own time table according to how bad I may be,eight years on and I now have a successful business, something I would never have attempted before the attacks
I hope that gives encouragment to fellow sufferers of this seemingly endless nightmare.
how is a person make a living
when you get these monsters in your head
i dunna what to say so hey uhh okay bye
I'm looking for some answers. I have had a bad headache for the past3 weeks! The pain is above the left eye and shoots to the back of the right side. I have had an MRI and it was normal. I,m having a Spinal Tap on 3/15. After reading some of the messages, it sounds a lot like CH. Can anyone help? Thanks for reading & kindly email if you have any suggestions. ~Billy~
I thought I posted here last week or the week before, but I'm afraid I was in such a prescription drug stupper...I probably did it wrong. Anyway I am 42 year old male and have been getting CH for the past 20 years or so. Luckily I have a very smart GP who knew right away what they were..yes even 20 years ago. You name it and I've tried it. I tried all the drugs listed here. I am just in the middle to end of a really bad run. Its been around 6 weeks since this episode began ...so its got to be coming to an end soon. My personal remedies are .....Imatrex (of course)...vicoden...and lots of exercise. I go to the gym every day after work...then later at night 9-11pm walk. Sometimes I think I must look like a zombie..walking the streets at night with the left side of my face constricted in pain....eyes bloodshot...hunched over...but if I walk long enough I can usually walk off the pain. My newest thing is trying to talk myself out of the CH ...and guess what ...I think its working. The last few days I have been able to talk myself down from them. I read this book on back pain (chronic pain) and its says that a lot of the pain we feel is self generated. I am beginning to believe this. Anyway just my 2 cents worth. I feel for all of you out there...because sometimes it just seems so hopeless...but keep the faith it does get better.
I am so fed up with Cluster Headaches, I have been suffering on and off now for seven years. They have only come back to haunt me the last six weeks or so and I'm praying for the day that they will just go away !
I am still looking for suitable medication to control them so if anyone has had good experiences with certain drugs or alternative medicines I'd love to hear from you !
A very fed up ClusterHead !
hi, i have friend, jay, who is going thru a really bad time
right now with his clusters. they appear more frequently, harder
and appear to last longer then they have in the past. he is
seeing a neurologist in our area but is frustrated at this
time. he is looking for any advise, espicially other medical
physicians who may be of help. please, e-mail back with any
advice or ideas you may have. ty
I can't believe I found this site.. I sitting here waiting for my next CH attack.. I have read more info on CH's in the last hour than the past 8 years when they started. My CH's usually last 1-2 hours, today I had one that lasted 15 hours... probably several of them togther. I wish everyone who has found a good doctor who understands the pain and who is up on CH's would post the names and city of that doctor. Then we wouldn't have to go through all of the "specialists" to find one.
I watched my father go thru CH's for 30 years... I was on a police dept and several times he asked to "borrow" one of my firearms for "protection". Although I wasn't suffering at the time, I knew what he wanted it for. I started getting CH's at the same age he did and also was diagnosed with Horner's Syndrome at the same age. I prayed to God that I wouldn't get this, but I did.
God bless all of you that have CH's. If anyone knows of a really good doctor in the Colorado Springs area that treats CH, please let me know.
its good to know that i am not alone.....
Cluster headaches for 25 years, have gone from episodic to chronic and now back to episodic. This episode more intense than the others with little relief from Verapamil, prednisone and Imitrex.
looking for info on meds or surgical procedures for clusters
Hi. I have suffered from cluster headaches for approx. 25 or more years and i have been to every Dr. I get cluster headaches about every 3 years and usually in the summer. Although the summer of 1998 they started the last week in August and they lasted 6 weeks! I have had the oxygen tank and i have taken imitrex but so far nothing has really helped! When i had them in 1998, they were the worst they have ever been! I even got them during the day which i hardly ever use to get them during the day! I had lost 6 weeks of any real sleep and became extremely depressed, thinking they may never go away! They usually wake me up 2 - 4 times during the night and the pain is so intense i can't stand it! Most people have never heard of cluster headaches and have no idea what i am going through. I hope to learn more from this web site.
hi!my name is anna my friend chryl have cluster headache i'm very sad when her headache comes its been six weeks she cant work help us.....! i hired about there no cure for cluster headache i dont belive that please help us .....
I have suffered with cluster headaches for about 2.5 yeaers now. When they hit, I can have up to 10 a day (which sometimes last only 10 minutes - or 1.5 hours). They can wake me out of a deep sleep to the point that I toss & turn & beg for the pain to go away. I usually try to ignore it, or 'will' it away...but that usually doesn't work. The pain is always directly superior to my right eye. When the cluster headaches hit, I have no idea how long the epsodes will last. Sometimes it's a matter of days...but other times it's weeks on end. The most remarkable feelings I have during them is the inability to read correctly & anorexia. I have zero appetite when suffering from a cluster headache. This was something I never thought I would've had in my life. Up until the age of 28 I had perhaps 5 normal headaches over my entire lifetime!!! One thing is for sure...when the cluster headache gets me down to the point of agonizing tears, I try to count my blessings (at least I can walk & am not paralized, & am not suffering from any terminal illness), sometimes that makes me feel better. So far the only respite I've had has been to deep breathe & massage my headaches away. Two years ago, I was hit with so many cluster headaches over a two month period that I was afraid to leave my apartment for fear of an attack while outside. During this time I brought a heating pad with me to work. I found that if I was hit with an attack I could hold a heating pad over my right eye & forehead for 5-10 minutes & the cluster headache went away. Perhaps this would work for others. I am hesitant to try any drugs; however, I will try the water treatment &/or oxygen. Till then, I try to eat right & exercise regularly with a variety of outdoor activities. For the July & August of '99 I swam laps everyday in an outdoor pool. For those two months I never had a cluster headache. Now I live in an apartment without a pool & my bathtub just isn't big enough to swim laps in (ha ha). I feel better now that I found this website. My goal was to find non-drug treatments that work. I don't want the headaches to control me...I am/will control & handle them. Tiffany A. Chicago, Illinois
Iam really thankful to have found this site. Am going through a cycle right now.
Am taking zomig and codiene for the pain(DR decided that i had cluster headaches). This seems to help
a little. I have the injectors to use,but trying to save for a real head banger.
I continue to pray that they come up with something to do away with the beast!!!
Thank you very much for this site. I'm a relatively new CH sufferer and appreciate the information from other sufferers. I'm glad to know I'm not going crazy =) I believe the onset of my experience with CH was due to a closed head injury I sustained in an auto accident in December of 1997, at the age of 22. That injury and first bout with CH lasted about 6 months before it eased off. My doctor treated me with oxygen therapy and it helped take the edge off the pain and I was able to graduate from college within that same period. I thought that when the bump on my head from the accident went away, the cluster headaches would too. And they did, until they came back 4 weeks ago.. just over 2 years after the initial onset. It's actually quite depressing to learn this may be an ongoing part of my life now. I also have suffered from migraine headaches for the past 7 years. The most troubling part to me is that I find it extremely challenging to accomplish even simple tasks, such as getting dressed, when I have either type of headache. It helps to know I'm not alone though and can seek information, some comfort, and even a bit of humor at this site. Thanks again!
What a wonderful place this is, the potential is far reaching, I have had Cluster headaches for 47 years and the biggest problem other than the headache is finding a Physian that understand and will be aggresive in treatment. I don't need diagnosis, I need treatment.
Hello from a long time CH sufferer. I have been getting these CH's for 20 years (now 44 yrs old) & never knew what they were (as alot of other people have posted). Had the juggle from General Practice to Dentist to Ears Throat Mouth DR back and forth, all with no relief. Finally in Jan 1999 my new General DR sent me to a specialist & I was diagnosed with CH. What a relief to finally know what it was that was driving me insane. The relief turned to horror when I found out more information on CH. In 1999 I was on the tail end of a nasty 6 week session and so no meds were given. Just a reasurance that the "next time" they start up again come in for the meds. My annual dances were usually a once daily 2 hour session starting sometime between 9pm to 2am and last for about 6 weeks. Intense pain on the left side of the cheek & eye. Nothing I ever tried helped shorten or dull the pain. The first week is not intense but then it would build to 8-9 on the kip scale for about a month. The last week would then taper back off.
Just like clockwork the CH's started up again about 2 weeks ago. The first week was very mild & I didn't go to DR's. The 1st day of the second week I started getting 3 CH's a day (6am - 3pm - 10pm) at about 6-7 on the kip scale. Scared the crap out of me. I called for an appointment with the specialist & was told the first opening was 4 days away. Pleading/begging didn't help. I did go back to my General DR the next day praying he could do something & he came through. The specialist had followed up last year with a note back & explained the drug remedy he was suggesting. My general Dr gave me enough meds (20mg prednisolone (sp) ) 3 times a day to get me to the specialists appointment. After reading about 50 posts on this web site I felt my chances were slim that this would work and I was scared because I would have to deal with 3 sessions of dances a day instead of one. So far I am a very luck man to be able to say that I have had immediate relief. The first day on the meds the CH was very mild (still 3 times a day. The next day was they were almost completely gone. 3rd day I am clear as a bell. Today the specialist said to continue the meds for the full 7 days, then reduce by 1/2 pill each day until down to nothing. If they start backup during this taper down phase, then go up 1/2 pill a day & hold for 3 days then taper down again. I will be very nervous when the taper down starts & the fear of more pain starts sinking in. I will post again after I am off the meds (whether the dances start or not). I know that different things help different people but I feel it is important that we each share our experience to try to help each other. I cannot believe in today's world we would have to suffer with this agony without the medical profession knowing what is happening to us or the drug companys coming up with a method to treat this. This web site is a godsend of hope & support that for 20 years I did'nt have. Good luck & keep sharing, searching and caring. Thanks for being here. Mike.
Sorry all I've put in wrong E-mail address,new to this computer revolusion. See below.
Hi Sufferer's. I have been suffering CH for 11 years now. I
started getting them at 20 years old, I'm now 31. I've only had a break of 3 months in all this time. I've tried Lithium, Verapmil, Prednisolone(steriods), Sumatripton, both nasil & inhaler and lots more, to no avail. Then I was
prescribed Imigran(Imitrex) injections, What a relief !!!
The beast then started attacking more regular, (33CH in 2 weeks) HELP!. I was then passed on to another Neurologist. I
went into hospital on 28 Feb 2000, he injected Glycerine into the area where we all recieve the pain, (this reduced my CH from lasting 1 hour to 20-30 mins, but it didn't stop the pain as expected). I now go back into hospital again on
13 Mar 2000, this time he's going to burn the nerve end's. I will be left numb down the left side of my face, to what degree of numbness I don't know? and neither does he. I will hopefully be pain free after 11 years. I've met another sufferer from my region, he had this procedure done in Jan 2000, he has not had a CH since. It's left him totally numb, (as expected) but he can live with that. He now feel's he can start getting his life back. I'm hoping there's light at the end of the tunnel, but for, HOW LONG?,
HOW BRIGHT?, WHO KNOWS?. I'll keep you informed.
help
I'm suprised that there are other sufferers out there like myself. I was first "bitten" about 20 years ago at the age of 28. I didn't know what to think with the pain being so intense. At first I thought I was having some sort of stroke or something. Maybe a brain tumor!
Off to the doctor's for the first of 3 misdiagnosis. First it was a sinus infection. That cost me my back top teeth that were perfectly fine. Siunusitus, facial neuralgia, no solution to my problem. Suffered through 2 cycles over the next three years. Finally a different doctor figured I better see a neurologist. BINGO...somebody knew what was going on. He managed to save my sanity with medication. Here's what the answer was. An IV of SOLU-MEDROL 125 mg.
That was followed up with an Rx of CALAN. I was CLUSTER_FREE for over 5 years. I just got nailed again this past week and ran to the doctor's. This time I couldn't get to see a neurologist through him because "they were all booked up." I wound up in the ER with my med records and they did the same with the IV. This time the neurologist gave me an Rx for DEPAKOTE 250 mg. Yesterday and last night were the first with no major "head-bangers". There is a little discomfort, but I can live with that little pain.
They said the secret is to catch the "cluster" early in the cycle as possible. Hey, it seems to help me, and anything I can pass on to other sufferers might be useful. We all no what kind of hell we go through with these. Thank you and may GOD help us find a cure for these "demons".
For so long, I thought I was crazy. Such an odd feeling of relief to know that what I suffered from was not my im agination. Here's to the hope that someday, our relief will come permanantly....
I was diagnosed as suffering from cluster headaches this morning after a long process of eliminating other disorders, thank goodness something can be done about it now.
I am glad i am not the only one out there.
I am a white male adult, 40 years old. I've been chased by the beast for 15 years. Spent the first 5 being told it was all in my head...(duh!!)...was prescribed codeine, fiorinal and vicodain till I was sick to my stomach, constipated, and still getting no relief. Tried the ergotamine tablets disolved under the tongue, verapamil as a prophylactic, cafergot by itself....(works but that came later)...and finally made enough waves that my HMO refered me to a neurologist. I'm episodic, typically getting only 2 cycles a year. They usually start around the time changes in October and march, and run for 8 to 12 weeks. Unmedicated I will get 1 to 2 headaches a day lasting from 2 to 3 hours. What worked for me is when the cycle starts, (I get my first slammer), I go on 1200 mg a day of lithium. This blocks 90 percent of the headaches. For the ones that break through, I breathe pure oxygen,(critical that I start within 3 to 8 minutes or I'm dead), and I take 2 to 3 cafergot. What my neurologist says is, the cafergot by itself would stop the headache, but it takes over 10 minutes to get it loaded up in your system. By that time the pain mechanism has been unleashed and well, you know what that means. So the oxygen keeps the beast at bay until the cafergot can fence him in. Well that's it. It has allowed me to lead a normal life again. Am happy to mail back any details i left out. Wish I'd have had this web page 15 years ago!
My oldest son suffers from migraines and I have them too! His fathers side of the family have them worse. He is twenty now, but recently he has experienced what he describes as explosions in the head. With these explosions came clentching of the jaw and he bit his tongue. The doctor said he has to research this out and put him on blood pressure medication because his blood pressure was high. I am also on blood pressure medication and so is my mom! Has anyone ever experienced what I have explained????
i am a sufferer of clusters,have been on and off for the past 14 years.hello to all
Hi, I'm new to this experience. I just started about three weeks ago and now am fully involved in the constant pain and agony of the daily attacks (about 5 on average). I don't drink or smoke, but have seasonal allergies and live in a rather gray environment (Seattle). I'm 37, married, and in (or was in) great health. What in the world happened? Why did the lightening bolt strike me now? I guess all of you feel the same way, "what happened?"
My doctor fortunately picked up on the signs and diagnosed right away for clusters. Had a CT scan done (though it appears an MRI is more useful.) He has referred me to a neurologist for further evaluation.
Besides not yet finding the right mix of medicine (Imitrex does not work and Verapamil hasn't effected it either, though it does reduce the aura effects), I am really perplexed how one is to function in the business world with this condition. Most of my attacks are during the day from 4:00am to my last usually around 3:00pm. Besides banging my head against my chair and pressing my pens and pencils against my head hoping it will somehow go through, I haven't found anyway to handle normal tasks like reading, talking or writing during these things.
My wife is a migraine sufferer who, because of a heart condition, is precluded from using all prescription migraine meds. So she does have an understanding of pain which helps. I just pray that this will pass soon enough, like the rest of you out there.
I don't have much else to add, except that I have learned a great deal about this horrible thing using this website and reading your messages.
Signed Novice Pain Sufferer
The devil seems a little tame compared to what I call it! But a truly great site and I will find it very useful and informative.Suffered too long but one attack is too much!
I'm not suffering from CH, but my brother is. Since his first attack in 1998 I've been looking for useful information which might help him and us (his family), too - and finally I found something! Thank you all for providing this wonderful, interesting, informative and useful site!
I am currently CH free for over two years. At age 77, I think I have outgrown them. They started when I was 40. I tried everything med and other treatments. At first Cafergot and oxygen were the routine. Being a pharmacist I was so afraid of becoming addicted to narcotics that I started using too much Cafergot. At some point the headaches became rebound headaches. I started into denial and confused thinking about being "hooked" on Cafergot. Went to see a doc who was prominent in the headache field in California. He told me not to worry about using too much Cafergot. Worst advice I got. Eventually some years ago found a neurologist who has treated such cases. He helped me get off Cafergot. Now I am taking Verapamil, Depakote, and temazepam (for sleep.) Imitrex inhaler works immediately for me. Seldom need oxygen for long. Reading the posts here says it all. I've had the same pains, thoughts as all of you have had. For anyone who is a chronic sufferer, I recommend you take an honest inventory of your meds. Almost any of them, even Tylenol are capable of causing rebounds, especially anything with ergotamine.
I am sufferer of CH I have been for 2 years the doctors just don't know what to think of me,I am a puzzle they call it a toothache,then an ear infection,then a seizer,one of theses days they will call it what it is tilll then I am being diagnosed with neoalgia I think you spell it that was even though I have no ticks in the side of my face oh well I will keep trying I stumbled on to this site through another one and this has been real informative it has taken me hours to read everything,I know what I have but telling a doctor is another thing,they keep telling me they are the doc's and they went to school for this so I printed out everything I can find I have an appointment with another new one this week I hope I can just hand over this info and have him read it.wish me luck thanks for the site and all the help.
I've enjoyed checking this site out. After 20 years of these headaches I've never spoke with anyone else who has had them. It was nice to hear all the comments that are so familiar. I guess I'm not alone. Not the only pacer in the world. I even had to laugh a bit even though my head was still aching. Thanks
i am new to this wonderful site.....i'm a 61 year old male with a 20 year history of the demons.....fortunately, about 15 minute bouts with an average intensity of 6 on a 1 to 10 scale....about twice a year for a month each....have tried lithium and verapamil in the past with not enough effect in the near term to keep me on them.....want to try oxygen or something else for the midnight slams....does anyone have a clue when clusters start to recede in terms of average real age?.....i plan to live to be a hundred and would like a few clusterless years.
Its been a year and a half since the beast last visited me
and I am starting to get worried. Scared ****less is more like it! Reading through this sight actually brought tears to my eyes and a strange sensation that I am not alone. Thank you!!! It is impossible for friends, relatives and co-workers to understand the pain but now I have somewhere to go. I would like to have my very patient and understanding wife post a messege for all the non-believers for she knows all too well what we are going through next to experiencing the beast herself. Thank you, thank you, thank you.
My first note was a little hurried and I didn't get to say a few things...
one being how much I appreciate this site. This misery loves company. I'm a long time sufferer, I think there's hope.
My headaches seem to be fading, albeit slowly. Some wonderful day the beast will go away for forever.
I just found out after twenty years that what I had was cluster headaches. I've never been a part of a support group but I must say it is comforting to know there are others that can truly understand these headaches. My husband is really the only person that has seen me with a cluster heachache as they happen in the middle of the night. I think everyone else thinks I am lying because I appear fine in the day. Doctors told me I had migraines all these years. I would talk to other people who said they had migraines and other than the pain on the right side, they weren't very similar. I thought there was something seriously wrong with me. Anyway it helps to know what the true problem is.
I just found out after twenty years that what I had was cluster headaches. I've never been a part of a support group but I must say it is comforting to know there are others that can truly understand these headaches. My husband is really the only person that has seen me with a cluster heachache as they happen in the middle of the night. I think everyone else thinks I am lying because I appear fine in the day. Doctors told me I had migraines all these years. I would talk to other people who said they had migraines and other than the pain on the right side, they weren't very similar. I thought there was something seriously wrong with me. Anyway it helps to know what the true problem is.
Today I had the opportunity to read about 50 stories from the board. Most of them caused, I had tear in my eyes. We all, who suffer from this devil´s pain mostly between 8 - 10 kipp know,what does it mean to smash your head against anything to reduce your pain, most of us know how difficult is to be fully understood by a docs etc.
I found this site just recently, but I learned really much.
But what I miss on this site, resp. on this board are messages form people, they found a way out. Their help to us, who are thinking on misscellanious things, some of us even on suicide. WE NEED HELP.
After reading this messages I got depression. I know, it´s not normal. But I would like kindly ask everyone who already got over or haven´t had CH for long time to share with us everything what he knowns, becouse one never know what could bring relief to us.
THANKS TO ALL OF YOU WHO SHARE.
Thank you for this Website. I got cluster headache since 1985 and I wasn't diagnostiqued before last year (1999). It was very dificult for me to find good information here in Switzerland. As a member of this painfull familly, I give You all my own recipe to relieve the "Devil": Taking a very hot bath while showering my eye and left temple with very cold water often reduce the pain much than head banging. Even more, sometimes it relieves all the pain... letting me sleep... Hope this can help somebody. At this moment I'm begining a new bout of CH since three weeks after one year of remission. Begining today a corticoid solution... hoping it'll work. Help other people to be correctly dignostiqued by speaking about CH to every physician and pharmacian or droguist you encounter! It's a double pain for those who don't know they have CH. It almost droves me insane before I was dignostiqued. Pain from 9 to 10 PLUS asking myself about beeing insane... By all and at least there are hours without pain to enjoy!
Hello, I have been suffering from cluster headaches since I was about 12 years old. Now at 25 I find the intensity of the pain to have not changed. I've tried all sorts of medication, can anyone tell me of something that really works!
Cluster headache, the worst pain in the world? Not for me!
My cluster headaches have returned after a two year remission. During the remission I moved to a new flat so I could return to work without the risk of my flat being repossessed if I had to stop.While I was on holiday they developed into the worst I have ever had. I had no treatment available in France and no energy to talk about Ch in bad French to a doctor who might never have heard of it.
Previously, I was chronic for seven years, unemployable, living on benefits, unable to plan to do anything - sport, cinema, theatre, unable to go out without an oxygen cylinder, depressed, desperate, suicidal. The fear that it might be a brain tumour, after all; the fear that the next headache will be the worst ever, the one that turns the idea of suicide into a reality. I always, deliberately, have the means to hand.
You know all this - you live on the same street. I have been brought to tears by some of your postings.
But my remission and this site have given me a better perspective. You see, we SURVIVE, we ENDURE. We are midnight fire walkers, battlers with a demon and made strong by it.
How do we cope? Each, well or badly, in his or her own way. We have differing cultural backgrounds, different problems, strengths and weaknesses. Many of you will suffer from traumas other than CH.
My beliefs are my strength. You may not share all or any of them, but something keeps you going and may help others. Medication may help, but it is that inner quality which is the real support. Let's give everyone, newcomers in particular, hope by sharing our power.
I feel very lucky and privileged, because:
I have the support and understanding of strangers around the world on clusterheadaches.com, many of whom take the time to offer their assistance to newcomers to the site
I am 50 and have both parents and my sisters, all well and two grown-up children whom I love , of course, but also like very much. I have friends of all ages and have met many people whose problems make CH pale into insignificance
I am an atheist and anarchist, who has rediscovered his idealism and who has a faith in the essential goodness of people. I am able to look for and find that goodness, even in the most unexpected places. I live in a society which allows me freedom of belief
I live at a time when, despite its undeniable horrors, the world community will reach out to help victims of famine, natural disaster and war and will suppress dictatorship through altruism, not realpolitik
I have a condition which does not damage me. I was diagnosed within months and lived three miles from a headache clinic which provides fantastic support for CH sufferers.(Thank you, Charing Cross, especially Drs. Steiner and Peatfield) Millions die of diseases which I do not have. Some people will think they have migraine and find out they have a brain tumour
I have not seen my family and friends die in an earthquake, of easily curable disease or murdered in front of my eyes
I have not had to sustain hope where no can be no hope
Love to you all
I have been visited by the demon for about 15 years and he keeps on changing. This episode he is getting both sides of my head, sometimes one then the other or both at the same time. My clusters last for months andI don't have long periods between (longest is 1 year). The only thingI can think of is I get them because God knows I can take it. But it is getting thin.
I'm so grateful that I found this site. I'm in the middle of a bout now, and it's gone on for a week. Saw the Neurologist today. He started me on Neurontin. Never heard of it before. I hope it works. Also have to go to the hospital on Wed. for a brain scan to rule out an aneurism. Had been pain free since 96 until now. Last time I was treated with Depkote and Oxygen. That took about 4 months to get over. I only get the demon at night. Wakes me up. I've found that 2 Excedrin Migraine help to ease things, but then I can't sleep because it has caffeine. I also have a 2 year old. Some days I'm just dragging my ass around the house, and can't function properly. It's not fair to the baby....he wonders why Mommy can't play with him. This whole Cluster thing ruins the quality of life. The medications we take ruin our bodies. Just doesn't seem fair. I hope all of you out there have a pain free night. Even for just one night. I know you understand, and would give anything just to have it stop. God Bless!
I have had headaches for 8 years now. They are inherited. I am glad I am not alone. I am on 2 types
of High Blood Pressure Medicine along with Imetrix pills.
I am glad not to be alone.
i came across this during a headache.thank God i dont have them as severe as alot of people. i go back to dr. tomorrow.i cant wait.
i would like 2 know the newest medication on the market. and also mind last 3-4 days.
I suffer greatly from these deals. I take imitrex. I want oxygen but I can't figure out how to get it. Just call the welding supply store?. Don't they think you're a nut? I do not want another headache. I think I'll try the bag of frozen peas - that sounds good. I have found that a scalding hot shower followed by getting on all fours with my head on an ice bag and a heating pad behind my neck and moaning so that no-one can sleep through my attack is the best therapy. I'm looking for advice, though. Proctologist? Wisdom teeth already gone. Help. Thanks.
I turn 50 in July and have had clusters since my mid-twenties. I guess I've been lucky. They used to come every year and pound me for a month.
Once a day in the afternoon they would destroy me...incapacitate me... turn my world upside down. But they never came at night.
As the years wore on the lapse between battles grew longer. Now they come every 21-22 months and they are milder but now come 4-6 times a day.
But mild in this war is still gruesome. Just ask my beautiful wife who wakes up 3 times a night to find me on the floor of my hideaway or in the shower.
I take Zomig like a preventative (up to 4 times a day). This isn't good to do, but my body seems to tolerate it and it helps. Hot showers seem to help despite
the seemingly incorrect physics.
Reading your letters brought tears to the eyes of this stone cold personality. But I'm really not that tough anyway.. Just ask the beast
Mark Connell
mconnell@elmira.edu
My husband is a clusterhead, has been since he was a teenager (he's now 46) and is just starting another cycle after being headache free for a little over two years. I am so glad I found this site! I printed off a bunch of this site for him to see, he couldn't believe there are so many of you! He, like most all of you, has tried everything, on oxygen and prednisone right now. Hope for some relief soon. Thanks for such a great, informative site!
After 21 yrs of feeling alone with CH it is a bit of a comfort to find people who can relate. I am in the 3rd week of a cluster and have just found imitrex injected. Seems like a miracle but I have been let down many times before. Plus at $100.00 a day for treatment could become cost prohibitive. I would encourage anyone who has not tried imitrix to request it from their Dr.
I am a 33 yr male ,have had CH for 19 yrs. Have had MRI,several types of meds,including Immitrex inj. which almost killed me.The onlu thing that works for me to keep them in remission is to smoke pot.This site confirms to me that I am not the only one to suffer this affliction.Dr.'s seem to be moronic in dealing with this issue. If you are a doctor who suffers from these, then what do you do for them?My sincere empathy to all to who suffer this horrific affliction.Sincerely,G.P.
hello, all you clusterheads! this is wonderful, finally finding a place where there are people who can empathize with me. i have truly enjoyed viewing this site and i hope that many of you will be interested in talking with me more about the trials and triumphs you have experienced in dealing with this horrible affliction. feel free to email me. i'll be praying for all of you!
I hope, you are interestet in Members outside the USA.
Helpfull!
I have suffered from CH for 15 years. I have tried a couple of times to obtain social security disability (ssi) but have been turn down. If anyone out there has been successful please let me know how you acheved it. thanks
Please send info. on new remedies
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