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Below are the guestbook entries from December 1st-31st 1999. 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 Im 64 and have CH since I was 50. They were episodic at first but are now chronic. I have tried almost every medication available without success. Currently taking nortriptylene and covera and oxygen. Thank God for Oxygen, but of course it only works if youcatch it soon enough and even then ot all the time. Triggers are classic ones - alcohol,perfume, cologne, etc. naps, but major triggers the lat few uyears are reading and watching TV--that is using my eyes. First nasal passages close off, then turns into CH if I continue to use eyes. Neuro docs just shrug shoulders; optho guy says eyes fine and ENT guy says nose fine. Woudl like to talk to anyone who also has CH from using eyes and what if anything they have beeen able to o about it. Also, cant take tryptans or ergots because of coronary artery problems.Keith McCord <kmmcord@webtv.net> Alexandria, VA USA Friday, December 31, 1999 at 14:02:09 (EST)
Excellent web site - thank-you so very much for taking the time and making the effort to put together such a useful and reassuring resource.
I'm in the middle of a cluster right now. Hell, it's 2am and I'm afraid to go to bed in case I wake up with one.
Well, it's almost time that I can take another injection if needed, this time I'm not going to waste time and endure pain trying anything else - just gonna load up that autoinjector and fire...
Thanks for making me feel I'm not alone.
Nick
I've been getting CH for several years. Mine appear twice daily, at 9 a.m. and 9 p.m., each session lasting approx. 45 minutes. The entire bout lasting 3 months. Then they disappear for 3 years. This was my schedule until 1992 when they disappeared until Nov. 99. Now they're back on schedule.
Found your site while researching headaches; Thank you for the chance to relate my symptoms to those of others. I'm due to see a neurologist in January, not soon enough, for pain that seems to control my days. I thank God that my headaches are not as severe as some of your other guests. My heart goes out to them.
I am a retired Marine due to cluster headaches + other disabilities.I got my 1st headache on Aug 26 1983. This has forever changed my life. Even though I returned to school and completed a Master of Social Work, for the most part I am unable to be reliable to provide therapy. Mine tend to come on during mid-day and will often last through the night. My last major cycle lasted 5 mths, 3-8 daily. If it were not for a major medical problem where I was hospitalized an unaware of my condition, I feel that suicide was becoming to only option to my pain and suffering.
My name is Gordon. I have been suffering from cluster headaches
now for about ten years. It is nice to know that there are
other people out there that know what the pain is like and that I am
not alone. I try and tell other people what it is like but
I can see in there faces that they just don't quite understand
It is something that you have to experience yourself to understand.
I am glad I found this site and I look forward to visiting
it often. I am a 33 year old male living in Houston, Texas.
I look forward to hearing from you all, and especially those of
you that live here in Houston.
I am a 40 year old female and have had CH since I was about 16. When I first started getting them, my family thought they were migraines. Alot of my family have migraines and it wasn't too long before I noticed that my headaches were different and worse than anyone elses. Sometimes I thought I was going to die, sometimes I wished that I would die. I don't need to tell you about the pain, you already know. I suffered with them for years without seeking medical treatment because I was told that there was nothing that anyone could do about them. I had CH a few weeks every year, sometimes skipping a year. When I started to get them more frequently at about age 23, I finally found a doctor and he has really tried to help. I think I have taken every medication there is for CH. I learned that pain medicine is a waste of time and money! My headaches last abut 45 minutes to an hour, gone before the medication could help. I usually get 2 headaches a day at about the same time everyday. Most of the time they start at night while I am asleep. For the past couple of years the headaches have changed. I now get 2 or 3 monthly, sometimes skipping a month. Once in awhile I will get them for a few weeks. When this happens I take prednisone. I am sure you all know the routine, 6 pills first day, 5 the next day, ect. Sometimes it works, sometimes it doesn't. I also take "maintenance" medications, Amitripyline and Verapamil. I am not sure if they really do me any good. I take imitrex shots to abort the headaches. I think imitrex is a godsend! It works for me in about 10 minutes. Only problem is the cost, and I recently had to change my insurance company and they only pay for 2 boxes a month! Thats my kind of luck, find something that works and then have a hard time getting it! I had always heard CH were rare and was surprised to find this website! It breaks my heart that there are others suffering with this, but I am grateful that now I have people who really understand.
I am 48 years old. The last time I had cluster headaches was approximatly 9 years ago. I take Calin ( verapomil daily as a preventative medicine. I thought I was cured. Now, 9 years later the headaches are back. I need to research the appropriate medications to use to abort a headache. I used to use cafergot, which was later replaced with Wigraine which I understand is no longer made. I need to know what the replacemet drug is. I am also interested in finding out how well the ergotamine inhaler works.
Help appreciated. Can anyone recommend a headache specialist in Brooklyn NY? Been suffering with mixed symptoms since 1991. Did see a term "combination" headaches on one site. Does anyone fit this pattern. Pain at times feels like I got whacked on the top of my head with a frying pan. It lasts all day and, if lucky, is not there in the morning. Lately, not so lucky. At times alone or in combination with previous pain, get intense throbbing in right temple and eye socket. Sometimes pain will intensify in temple as I get a jolt of an even more intense pain.
Hi my name is Miranda. I am 17 years old. I am a healthy 5'9" girl who plays basketball until my shoulder got tore up last year. I have had the cluster headaches since i have been 14. They started in 1996. When i have a headache, people tell me they know how i feel. i just look at them and laugh. they have no idea how i feel. They totally kill me. it is totallly embaassing when i get them at school or work. I take Imitrex but it don't seem to work as good as it used to. I have just had blood work done and the tests came back fine. The doctors are startig me on a pill called Maxalt Mlt that disolves on your tongue. it seems to work okay. they are also gonna start me on oxygen. I am willing to pay anything to the person that comes up with a cure for these things! Feel free to email me if you suffer too.
Iam a 54 year old male who has experienced CH on a yearly or every other year (8 weeks in winter) since l980. Fiorocet (along with pacing in a quiet, dark room) takes care of the pain in about 20 min + or - 10. Severity is usually 7 or 8 on a 10 scale, but I do have 9's on occasion. One metaphor describes them: think of a summer thunderstorm advancing on your neighborhood , commencing with a distant rumble of thunder (pain) , crescendoing to loud, frequent thunderclaps (intense pain), followed by a diminishment of the thunder as the storm moves away. With a typical 20 to 30 minute headache duration, I'd say the intense pain lasts about 10 minutes. Does this ring true for anyone else as to the metaphor?
Avocat âgé de 53 ans, je n'ai jamais entendu parler du CH, jusqu'en septembre 1999, lorsque -soudainement- j'ai souffert d'une "énorme migraine", laquelle est revenue systématiquement aux mêmes heures approximativement. Après un premier diagnostic erronné (inflammation au niveau du cou!), mon médecin traitant a de suite soupçonné un CH, qui fut confirmé par le Dr.Prof. JACUY. La résonnance magnétique l'a "couché sur plaque". "Mon CH" se réveille, presque tous les jours vers 16.00 et puis entre 22.00 et 02.00 (il préfère 01.00...)Cela dure entre 45 min et 2 heures. Oxygène et isoptine (80 gr- 3 x par jour). Depuis le "fameux 9 septembre 1999", je n'ai pas eu -hélàs- beaucoup de répit, quoique dans l'après-midi, ce "démon" ne me fait plus littéralement grimper aux murs...Le soir ou la nuit, c'est une autre chanson!
Je rêve d'espoir, en me disant qu'un jour, peut-être, le CH m'aura oublié...
Je salue tous mes soeurs et frères qui souffrent du même mal, et visiterai souvent ce site...
F.HERTSENS, Gosselies (Belgium)
Hello.
I am living in Mozambique, and the migraines I used to suffer from are making a violent comeback. I am desperately looking for a headache specialist neurologist in South Africa.
This is why I am sending you this email, to ask if you know of a doctor in South Africa from whom I could get some help.
Please excuse me for the hassle. Thank you in advance, and have a great 2000!
My daughter has suffered Cluster Migraines for 6 years. We are hoping to find someone out there that has the same symtomes and maybe some real answers instead of "we don't have any more ideas!" as our doctors say.
Greetings!
My name is Kevin Clark and I hope everyone's having pain free holiday season; I have not.
The diagnosis I received several years ago was that I have "atypical" cluster headaches.
I am 44 now and have had clusters since I was 20; didn't realize it at the time but during later interviews and doctor visits I put the pieces together back that far.
After taking your quiz I'm able to say now what makes my clusters atypical; not sure that it will help but at least it's something. Maybe someone else has the same symptoms.
The clusters last 6-8 weeks with a week or so of pre-headaches before launching into the real ones.
The pain is always behind the left eye and when the pain is at its worst, there have been times that I've wondered if digging my eye out with a screwdriver would make it feel better. In fact, if a doctor came to me and said that there was a fool-proof, never-have-another-headache 'cure' that involved surgically removing my left eye and some of the tissue behind it, I'd do it. But that's just fantasy.
Anyway...
I do not suffer nausea or sensitivity to light.
My face does not droop.
I do smoke, but did not smoke when the clusters started in college.
There do not seem to be any triggers.
I've had clusters at all times of the year with anywhere from 6 months to three years between.
The three drugs that I've settled on to get me through the clusters are:
Elavil at bedtime to sort of reduce the impact of the headaches -- it helps but it makes me feel like I'm living in a fog -- don't like it but it's better than the full blown pain.
Fiorinal (spelling?) is my mainstay -- very effective for me but I can't take it more than two days in a row because it just stops working, and third is
Darvocet (again spelling) -- not as effective and takes longer, if it works at all.
If I catch them early enough with the right pill I'll probably be OK but the worst is waking up with one already running. Then my only escape is to somehow go back to sleep and hope it'll be gone when I wake up again.
As an alternate treatment, I've gone so far as to soak a q-tip in tobasco sauce and push it as far back into my nose as I can get it. It may be a self-deluded illusion but it seems that if I can irritate the area back there enough, I like to think that I can short-circuit the pain development process. It seems to have worked enough times to try it again from time to time.
By the way, nothing works all the time. Some of the headaches will get away.
The pain comes on like waves of a tide. 10 seconds of increasing pain and 10 seconds of decreasing pain; I've timed it over and over again -- it's hideous.
The pain itself can engulf the entire side of my head.
Sometimes the crest of the wave feels like a bow string being drawn over a raw nerve.
During the height of the 'attack' there can also be exquisite little crinkles of pain that dance around behind the eye at each wave crest-- feels like a needle being twisted around. They subside but come back with the next wave.
A few tears come.
If the pills don't cut this down before it starts, my only escape is sleep, if I can manage it. Sleep doesn't relieve the pain but it allows me not to be there for it.
I've never actually gone to the ER for any of this although I know people that have. I'm not convinced that it would work and I'd rather try to get to sleep.
When the injections came out a few years ago, I tried one in my doctor's office but it missed the headache. I felt all my blood vessels open up as the drug went through my system but the headache just seemed to sit in a different place.
Lots of emotional shifts.
Wouldn't wish this on anyone.
Thanks for listening.
Would like to know others in my geographical area that I could contact to discuss medications.
I suffer from stabbing pains behind right ear. I have no idea what this is, cluster or what! It comes and goes, but each time it comes (could be months inbetween) it seems worse. I am scared of the thought of anurisms (sp?).
I must say, this website is wonderful. Thankyou so much. Finally I have people who understand me. I have suffered over 30 years now. My C/H's run about every 2 years, and can last from 2 to 6 months, having 4 to 6 a day. Before Imitrex, I tried every drug, only to find a few that helped ease my pain eventually. It would take hours before I would feel even the slightest relief. I am definately going to try the "Imitrex tip". I was using both injections everyday, so I had to keep trying other meds to take in between. Thus far, nothing else works for me. Thanks again for the tip. Before now, I knew of no one who could relate to what im going thru. It's a great feeling, knowing we're here for one another...
I am amazed at how many people have ch my boyfriend suffers from them and it affects both of us when he doesnt have his ch i have my migranes, his seem to be getting worse as the years go on, he thinks maybe it has something to do with peoples work environments (he works in a factory).i have looked for help forever i just discovered an accupuncturist that has moved to our town and they say it works, i am trying to get my boyfriend to go if he does i hope it works and i will be sure to let all of you out there know a.s.a.p. good luck to all of you keep in touch thanks for your thoughts. Jen Prescott 12/26/99
I am 43, and have suffered for cluster headaches since my early teens. My father suffered from them for many years, but finally has grown out of them, I think, he hasn`t had a problem for ten years. I`m hoping the same happens with me. He always put ice at the base of his neck when he was having a headache, he said that gave him some relief. I have done this also without any relief, the only way I find any kind of relief is to put a hot wash cloth on the side of my face, and I do mean HOT. My headaches most often occur in the middle of the night while I sleep. I have seen several doctors, all of which inform me that there is no cure for the headaches. I have take several different drugs that are suppose to restrict the blood vesals, the only problem is that I can`t take them until the onset of a headache, and by that time it is full blown, because I`m sound asleep until the pain wakes me up. It is nice to know there are others out there who understand the pain.
I just found your web site! Thanks. I've had CH for 14 years now. I'm in a new cycle of them now. I sure needed to find a site like this thanks Family!!!
I've been suffering to long to remember when I started. I do remember taking my then wife for a check-up at the hospital and I stayed in the car because of a cluster headache. But at that time I thought it was just a bad headache @age 25. Now at 43 I am older and wiser. I have a very understanding doctor. He tries new drugs samples often but nothing works like Imitrex injections. I also take amitriptyline at bed time. This bout came even when I take amitriptyine. Prior to this bout I was headache free for a whole year I hoped I was done with them. Starting in sept. they came back and made up for lost time. I was having one to two a day. If it was not for having good insurance I think I would end them another way. I can't think of not having some way of controling the beast. For those of you that don't have any way of pain relief my heart goes out to you. I never knew there was so many of us. Good luck and Merry Christmas.
Hi, I have been a C/H head for 17 years.I have tried nearly every drug on the market with not much success.
The only thing I have noticed about c/h in my years of pain is that my sleep patterns change.
I do not feel tired untill later at night and this runs along side my c/h's.
The only time I have ever had any relief is when I was taking sleeping tablets after my dad's death.
I do not think it was the sleeping tablets, but it was going to sleep (in my case) before 11.00pm.
I have been put on epilim 200mg 3xdaily and these seem to work (no Clusters) only if I keep my "asleep before 11.00pm
routine. C/H's have been linked to changes in the season maybe this is why !!!
Please, if anyone else can identify with this let us know.
What a relief to find this site. No one, in my circle of friends, has a clue what CH's are like. They think I am "pissed off" at them because I beg off activities because of "just" headaches. If they only knew......
I just turned 54 and they have been in remission for 12 years. I thought I was out of the woods.... WRONG. They just returned about a month ago and have been hitting me every night ('cept two, don't know why). I am hoping that I have a short cycle.
If anyone in the Seattle area knows of a worthwhile CH Doctor, I would be much appreciative. My last few doctors treated me for sinusitis and sent me to the dentist :)
I am 47 years old and have had cluster headaches on and off for over 25 years. In my case, I am nearly certain that they are brought on by stress. I kind of wonder if anyone else shares this view?
Hi everybody!
When I am at the end of a CH-attack,
I have the experience of the smell of burning plastic.
anybody has the same?
Alle the best!
Frans
Thank you for having such a detailed, informative site. I am experiencing cluster headache for the first time, and was searching for more information everywhere. I just happened upon your site, and it's wonderful. Most sites metion clusters only in passing. I needed more. I am a female and do not fit the stereotypical image for sufferers that seems to be represented everywhere. I have suffered from migraine for several years, and just thought at first I had a really bad migraine. When my left eye and nostril began to run non-stop, and my eye began swelling I was afraid something inside my head had exploded. I remembered reading something about cluster headaches in a migraine book, so I looked it up and thought I must have something else because it gave the male/smoker/drinker description. Thankfully my doctor seemed to understand right away. I suppose that a "one-time" cluster is too much to hope for, but I'm grateful for your site and all the information provided.
Sincerely,
Melinda F
Hello...I've been taking Duradrin for migraines for approx. 6 years.
I've been searching the web trying to find information on this
drug and who makes it. I'm concerned about the long-term affects
of this drug and what it's made out of...Does anyone have any
suggestions? Thanks...Melinda
CH'r finally diagnosed correctly in 1994. I get my cycles usually in the spring, but right now, I'm in an unusual Winter solstice cycle. Go figure. I'm also a patient at the Diamond Headache Clinic in Chicago, they're pretty good, but I WANT A CURE! I hate these things.....but I love this site. Lots of good info, keep up the good work.
Was in car accident back on 7-14-94 and suffer whiplash. I have been through 30 doctors and so far no one has been able to tell me what to do with this pain in the back of my right side neck occipal nerve 4,5,6. Going to be doing an MPV in Jan but cannot guarantee that this will works also. Sometimes I feel what the sense of having all this technology if doctor cannot find the source to help the problem. I'm taking so many different medications that I wonder how I work and deal with my customers. I appreciate finding this site cause I do get depress about all my situation. Thanks! Virginia
Guys,
It not me but my close friend whose a Cluster Head. Poor guy, we never really understood what was going on in his head!! But whenever he had those episodes, he would just withdraw himself from everything and everyone. At first, we thought the 'Devil' would go away but it didn't happen that fast. Then we started feeling he didn't want to be with us. But after having educated myself at your site, I realise how terrible these headaches are. While I feel thankful that I don't get them, I feel really bad for him undergoing all that pain and withdrawal. And we have misunderstood this all along!! Keep up the good work - its a great effort.
Hi, I’m John Leclerc from Burbank, California.
I was really happy to discover this great site in mid-November but was shocked by the number of us.
I am 61 and have been a CH sufferer since 1954 when I was 16. It has been three years since my last cycle but before this one, the cycles came every 2 years and lasted approx. 3 months. As a young sufferer the HAs were diagnosed as migraines. I’m sure that the doctor had no clues or had even heard of CH at that time. I remember that I was given pain killers like codeine and sent home. I forget what other treatments there were if any, and it’s no longer important. However one night while hospitalized for a HA a doctor tried to help me by giving an injection of morphine that should have put most humans to sleep. Not only did I not go to sleep, but the pain zoomed to an instant level 10 (Kip scale) and stayed there for hours. That was the most painful, meanest, longest 12 hour bout of my life. Not an episode I’ll soon forget. DON’T LET ANYONE GIVE YOU MORPHINE DURING A BOUT. Other than that, all I can remember is that I suffered a lot and what was done was useless.
In 1966 I found a doctor who diagnosed the CH and started me on oxygen (didn’t help). After that came a histamine desensitization program involving daily injections which I administered myself for a whole year (didn’t help). Caffergot, and Sansert were then tried when the next cycle started in 1968 (didn’t help). Over the years I have seen many doctors and gone through all the tests imaginable. One of the problems was because I didn’t see the same doctor for long, due to relocation, medical insurance changes, etc.. Further, none of them wanted to take my word that I had CH and most didn’t know much about it. They all wanted to do more testing like CAT scan, and retried the oxygen, and Sansert treatments. Apparently there was no other treatment available and so I suffered some more.
In 1978, I had a bad cold and was taking “Contact” for sinus de-congestion when the cycle started. I discovered that if I took a Contact at the start of the bout, the pain was not as severe (about 5 on Kip scale and didn’t get much higher) even when I was drinking during the cycle. I didn’t know any better and yes I was that stupid. After that Contact became my friend and was close by whenever the cycle started. I only took them when the pain got bad and relied on those pills for the duration of the cycle. I knew I was taking a risk of liver damage but when the devil shows up, screw the rest. Another thing I discovered was that if I drank a lot of water with the pill, the reaction time for the pill to take effect decreased. At least that’s what I believed at the time. I used that method for another two cycles until the manufacturer changed the Contact formula. The new ones didn’t work as well, so I experimented with other sinus pills until my daughter told me about Sine-Off. This pill works fairly quick (within a few minutes), is good for 4 hours, and most of the time I only needed to take half the dosage to do the job. This allowed me to take it for longer periods of time with less risk. I still suffered a lot but at least I felt I had some control to minimize the pain.
I never went to the doctors again for CH. I suffered through the cycles hoping that eventually they would disappear. When I turned 54 in 1992 that cycle was very mild and lasted only two months. The next 2 cycles were similar. Don’t get me wrong, I’m not out of the woods yet and it is still painful. Either the control process I’m using is working or the theory that CH goes away with age is true. As far as I know, there are only 2 things that can cause that: hardening of the arteries and dying. Neither one of these situations are any good and hope my control process is what’s doing it.
THEORY
I have a theory that may be full of crap, but I’m going to put it down anyway. If it helps one person it will be worth it.
Note - I’m not using any technical terms: first, because I don’t know many, and second, if I did would they be accurate? Now that I’m retired I might spend more time learning about the human anatomy.
PAIN
The pain comes in 2 stages:
1. Dilation of the blood vessels - The results of this condition is the popping that you feel/hear, shadows, and the skin sensitivity felt on the affected side. The pain levels of this condition by itself may go as high as say level 5 (Kip scale).
2. Fluid Secretion - When the blood vessels are dilated in combination with fluid secretion, higher pain levels are reached. The dilated vessels work as a shutoff valve for the sinus cavities while the secreted fluids keep pouring in. This is similar to pouring water in a balloon. The balloon expands until the pressure inside is that of the input pressure or the balloon bursts. The secreted fluid pressure level is unknown; however, it would have to arguably equal or overcome the blood pressure in the vessels to relieve the fluid pressure in the sinus cavities which would be quite high. This unrelieved fluid pressure is what causes the pain behind the eye, the toothache, noseache, and earache. This is indicated during the bout when constriction of the blood vessels occurs. Some of the fluid drains out of the sinus cavities and nose followed by an instant pain relief. Further aggravating this situation is that the secreted fluid has very low viscosity (thickness of heavy syrup) and does not flow well. I think that this is why the sinus de-congestion pill provides some relief. It helps to constrict the blood vessels and minimizes the amount of fluid secretion, thereby, reducing the pain level reached.
INITIATION OF THE BOUT
My observations make me believe that the whole thing starts in the GI-tract/system. When the beast shows-up, the GI system feels like it has gone to sleep. It’s like a boat dead in the water, nothing is happening. As soon as the HA recedes, you can feel the activity in you belly - (somewhere in the GI system) coming back to life. I imagine the scenario goes as follows:
Stomach - Sends a message to the brain. I need more blood down here these guys are falling asleep.
Brain - What the hell is going on? This is happening too often. OK, I’ll give you 25% more. The blood vessels are dilated to let more flow to the GI system (shadow - pain level 3).
Stomach - Sorry. We have not found out what the hell is causing it. We’ll keep looking. But there is still nothing happening. I still need more blood.
Brain - OK, I’m going to 100% more but I can’t keep it there for long. The left side of the head has already been complaining (bad HA - pain level 5).
Stomach - OK, but if it doesn’t work, I need more liquid or at the very least can you secrete saliva to help get this condition corrected.
Brain - I’m getting some very nasty feedback from the left side of the head right now and I can’t wait for you to investigate. The saliva is coming right now. Don’t waste any time (pain level 8-10).
Stomach - Flow is restricted somewhere in the GI-tract below. Leave everything on; I can’t do anything until I investigate.
Brain - Hurry! I have no control on where the secretion fluids are going and the left side of the head is giving me a hard time because not only am I feeding you saliva but I’m filling the sinus cavity with no place for the fluid to go. What have you found?
Stomach - There a big gas bubble pressing on an arterial wall not allowing the blood to go where it’s needed. Can’t you get the Main system to activate the necessary equipment to get more liquid down here to help dislodge the bubble. A large water volume would probably do the job and maybe massaging the outside belly muscles would help.
Brain - I don’t know if I’ll be able the get that urge communicated to the Main system. Everything is shaking and rattling up here and it’s getting difficult to transmit any messages
(pain level at 10 and banging head against the wall). Is there some blood at all going to the right place?
Stomach - Yes, but I wish we had some more help. This is going to take much longer. The bubble is starting to move very slowly.
Brain - I want you to let me know as soon as the arterial wall restriction is rectified
Stomach - The situation is rectified. Turn the secretion off. I think that you should leave the 100% more flow on for a few more minutes then go down to 25% more flow than average again, to make sure that everything is working correctly.
Brain - The secretion is off ( back to pain level 5). You should now be back down to 25% more than average (pain level 3). Is everything OK?
Stomach - Everything is working fine. Normal activity has resumed. You can now go back to normal flow (shadow and pain gone).
Brain - The left side of the head is finally clearing up. But it took a lot of pain. No permanent damage has been reported. I better urge the Main system to sleep and get all that sensor activity quieted down.
I know that the above is simplistic but it is reasonable and possible.
CONTROL KIT
1. Sinus de-congestion pills
2. Lots of water/decaffeinated pop
3. Ice cubes
4. Saline Spay
5. Sleep and rest whenever you can
CONTROL PROCESS
Remember that this is only used to limit the level of pain and there are risks involved. You should try it for a short period and if the results are positive talk to your doctor. Using this process shortens the bout time or at least it seems that way. The following is what I do. You may want to make changes as you go.
Sinus Pills - If I wake up and I’m already at pain level 5 or above, I take max dose. If I’m at level 4, I take half the dose. If I’m only in the shadow stage I don’t take any unless I can’t control it with water only. I drink lots of water.
Note - Experiment with the type of sinus de-congestion pills that works best for you. Remember that if you take those pills for longer periods than recommended there are health risks involved. It’s your decision.
Water/Decaffeinated Pop - If you’re like me, water does not taste that good and I usually only drink it with booze. But in this case you better leave the golden nectar out of it and drink that water pure. I find that when the bout starts I get faster results by drinking a full can of pop (diet orange - your choice). After that I pour as much liquid in that belly as I can stand. The more the better. Like Margi says “water, water, water”.
Ice Cubes - After I drink that first glass of liquid, I pop an ice cube in my mouth and suck on it. It feel a bit annoying at first but I stick with it. The ice tends to stabilize the blood flow to the head and decrease the dilation of the blood vessels to the sinuses. I keep popping those babies in there until the pain is gone or the pain level is down to 3.
Saline Spray - As previously mentioned, the secreted fluids have a low viscosity. The saline solution when sprayed and aspirated, while the blood vesselsare constricting, dilutes the fluid in the sinus cavities and speeds up pain relieve.
Sleep and rest whenever you can - This is easy to say but not easy to do, especially if you’re a working stiff. It’s catch 22, the more tired you get the worst the HA, and the worst the HA the more tired you get. Take every chance you get to lay down and rest, and if you can sleep, all the better. Hopefully you have an understanding partner that will allow you to do that.
I hope that this was not too boring and if you made it down to here and are willing to try I would like to know what your results are. If you think it’s all bullshit, I would like to know that to. I sincerely hope it does help someone.
John L
I HAVE HAD CLUSTERS FOR 10 YEARS NOW. NOTHING SEEMS TO WORK. Ox DOES HELP SOME. I HAVE BEEN TRIED ON SO MANY DRUGS WITH NO SUCESS. PAIN MEDS ARE ALL I HAVE LEFT IT SEEMS. WE NEED MORE RESEARCH DONE ON C/H'S. DOCTORS NEED TO BE MORE UNDERSTANDING ALSO. GOD BLESS EACH OF YOU.
After 24 years of CH, I've never met even one other person who had them. Now, at long last, I can see I'm not alone in all of the pain and frustration. That's Quite a relief, as many of you know! Thanks.
I first went to the doctor with severe headaches about nine years ago. He told me to go away and take an aspirin. I was doing that until about 3 years ago, when I was recommended chiropractic. been having that with various degrees of success since.
Looked on the web for inspiration for the first time this week after latest chiro session failed to stop clusters. Great to find the site, and get an insight into the problem, which was described like nobody else has described it before.
No professional has ever even mentioned cluster headaches before, but my symptome fit precisely.
trying the water idea now, and it has sort of worked for 2 days. keeping fingers crossed.
Thanks for your help, Julian
I have a CH episode every 4-5 years (thank God it's not more often!). Have just started another episode following a flu! My dad has them and my grandfather did too. PS: Saipan is a small pacific island...
Help! I was just diagnosed with Cluster headaches and it feels like my life is falling apart. My husband is extremely frustrated, as I am. Any help would be greatly appreciated.
It is so frustrating to live in a small ciity. Of course, the drs.
in the larger cities just told me it was all in my head. The
local dr.told me "What difference does it make if its cluster
headaches ot migrains. We can't treat either one. Then
just to put the final blow, my boss today said on some of the
sick days I took, I wasn't sick. She has been nudging with
"if you are incompetent we can get rid of you." I know I shouldn't feel sorry for myself.There are, others who are much worse than I. Any thoughts...have these happened to someone else? How did you deal with it?
I've had CH since 1977. This current cluster began the first week of 1997. The longest period I've had without pain is 15 days since this one began. I take no theraputics and use MSIR to abort the pains. Everything else has quit working even Imitrex. I have taken every drug I have ever heard about as therapy and aborive but nothing works any longer. For many years Sansert kept my CH under control then stopped working and I used a combination of Verapamil and Wygrain. Now that combination has also ceased to be effective. The only abortive that works now is morphine{msir}, but the side effects are not good to say the least. Anybody have an idea as to what to try for control and to abort? My physician and I are both out of ideas!!! Needless to say, I'm a little tired.
I have been a cluster head for 18 years and until I met my present G.P. I was diagnosed as having trigeminal neuralgia.
I was treated accordingly with sonamigram, carbamazapine and ibuprofen 400mg. I need not explain the demon to anyone so you can understand why I sometimes used to take 12 ibuprofens/day and consequently caused severe damage to my stomach. Fortunately several courses of cimetedine cured this problem.
About 6 years ago I was fortunate to find my present G.P. who listened carefully to all my symptoms and suggested that I may be suffering from chronic phase cluster headache; that is approx. 70% in cluster. He said there was a new drug avaliable which would confirm his diagnosis.
That night I was awoken with a well advanced attack, such is the horror of night attacks. I struggled to prepare the injection of sumatriptan, and the attack aborted so quickly I was amazed as well as being well relieved. The diagnosis was confirmed later by a top consultant at "The Hospital of Neurology and Neurosurgery" where I remained as an in-patient for two weeks. During this time they experimented with oxygen (10litres/min); this aborted an attack within about 20mins.
My present drug regimen is now verapamil as a prophilactic, which appears to have little or no effect, sumatriptan, tablets for the day time and injections for night time, and oxygen at 4litres/min which is not suffient to abort an attack but helps the accompanying breathlessness and panic.
The illness is now easier to manage but over the years I have become progressively more agrophobic and lonely, but I doubt if my situation is in anyway unique. Iam now 45 years old and according to all literature I have read the conditon does not go with age.
I have just gone into a period of remission and I wish all clusterheads a painfree christmas. Special thanks to Tracey who is keeping in contact with me. I would love to hear from anyone in London.
Love and Peace
Steerpike
E-mail mcnasty@cwcom.net
Forest Gate. London. U.K.
I thought I had some sort of brain disorder when I was younger because there just wasn't anything out there about them. All you ever hear about is migraines, and even now, I have to describe them as migraines, but more intense, for people to even begin to understand. Sometimes they look at me and I feel they're thinking 'Yeah, right! Nothing is worse than a migraine! Everyone knows that!' It would be great for our affliction were more recognized.
I use to have terrible migraines and understand how horrible cluster headaches can be. I have been wearing a sleeptights by LamCali to sleep at night, it keeps me from grinding my teeth which was the cause of my headaches.
Hi, I am a 50yr. female, after fighting a h/a for 15 days, thinking it was a sinus infection and thinking maybe I was having a stroke because my eye lid closing. I went to the doctor to only to find out that I was having a c/h. Great I have been dealing with migraines for 20 years, now this! I wish for a migraine now. The doctor had problems at first, because c/h normally only long in men (maybe she should look at this website). She has put me on predinisone 60mg a day, midrin 3x and Maxalt on my tongue when my c/h are severe,however (she does not want to put me on oxygen because it is so much trouble) which has been every night about 2:15mg. because me to wake up in tears holding my head. It sadden me o see that so many of you have had these things for years with no relief. I am so thankful for this website, I have learned so much from it..What a wonderful support group.
Thank you all for your input.
Doesn't it make you wonder why SO many people have these headaches? I'm sure we will find out some day that it is something very simple we are doing wrong! I was started on Verapamil nightly and Amerge when I get the headaches. Seems to be working pretty good. The headaches have subsided tremendously.
Hi! My name is Jann. I have suffered with ch for about 20 years. I also get migraines. I have tried everything so many different types of medicine I forget all of them. I now see a nurelogist and haven't had any changes. I have tracked these things, what I eat, weather etc. I seem to always get a more severe one when a storm comes in. My nights are best. I many times go to bed with a low ache and wake up in the middle of the night or morning with it about a 7 (using the 1-10=worse) scale. I take meds for depression because the last couple of years have been harder with frustration I think. I have developed a sleep problem now and I'm not sure why. I rarely have a day without a headache. I can be at a low 3 and 10 minutes later be at a 6. Exercise seems to increase the intensity of pain. Lots of talking or singing also do. I take fironel and wigraine for pain. I go to the hospital for shots when the level gets to a 9/10. Am interested if anyone has moved to a different area and had any changes. We are thinking of moving from rainy Seattle to Palm Springs desert area.
Thanks!
Jann
hi! my name is jill & i am from livonia michigan. i am 29 years old & i have suffered from cluster headaches for 5 years now. they only hit me for a few months out of the year, always october & november, but with the wacky weather we have been having this year, i had them november/december and i am at the worst point right now, so that is good news, because in my case, that means they will be gone until next year!!!!!!! i am not glad to say this, but i am... i am happy & somewhat relieved to find other (unfortunatly) sufferers out there as well. maybe someday they will find a cure or a way to prevent these torturous headaches and save us all our sanity!
Thank you for this site. It's great to know there is a way to communicate with others who understand what this hell is like! Bless you
I'm a 47 year old guy that has been living with clusters for about 12 years now. I found this web site last year but am commenting for the first time. It's readily apparent that although we all suffer with the beast, we all suffer in many different ways. It seems that no two of us have the same symptoms, and what works for some, doesn't for others. I'll give you my tale of woe in hopes that you can glean something from it that might help you. I do not get the pain as severe as some. I am completely incapacitated when I get a severe cluster but tend to lie down rather than pace. The bout comes once a year, in the late fall, usually preceded by twinges. Originally, it came every 7 months. It lasts for 4 to 6 weeks, although once it went for 3 months. Usually I have at least 3 days between headaches, but I might get 3 in one day. Most often they hit me an hour or so after I get to sleep. What seems to be most different about my particular case is that when I am in a cluster phase I also get migranes. O2 taken at the onset of a cluster will abort it, 95% of the time. It will do absolutely nothing for a migrane. The pain for both headaches starts off in the right eye. The cluster lasts no more than a couple hours {if I didn't take the O2} but the migane will sometimes go for four, accompanied by vomiting. Sansert will prevent the bouts, but takes two weeks to kick in. What I didn't like about Sansert is that I had trouble sleeping because of very intense dreams and that I always felt that I wasn't running at 100%. I don't fell sorry for myself because compaired to what some of you are going through, I got nothing to complain about. Keep the comments coming because it provides a wealth of information and hope for those who need it. GOD Bless.
Hi all, I'm a 29 female and I been suffering ch since I was 14, i was diagnosticated on march 1996, I'm a chronic ch, I tried with almost everything, verapamil,beta blocks (I don't know the name in english),esteroids, O2, lithium that took to the icu for 11 days with a cr and encephalitis, after that I was terrified to going again to a neurologist but this summer the pain was so terrible that I started a new treatment with cagergot but no results, so I got in a very big depresion, now I'm having prozac and lorazepam for my depression and now I'm having valproico acid (an antiepileptic) no results at all, well my pain is the same but the eye drops has stopped, but when I have my attacks I have to inyect my self (I hate nedles) sumatriptan and sometimes stop and sometimes doesn´t, I really don't know if this inyection really works but is what I have now, my deppresion is getting better since my mother found this place so I can see that I'm not the only one with this problem and there are more persons that can understand what I feel when this demon attacks. Thank everybody and sorry form my english. love for every body
Hi all, I'm a 29 female and I been suffering ch since I was 14, i was diagnosticated on march 1996, I'm a chronic ch, I tried with almost everything, verapamil,beta blocks (I don't know the name in english),esteroids, O2, lithium that took to the icu for 11 days with a cr and encephalitis, after that I was terrified to going again to a neurologist but this summer the pain was so terrible that I started a new treatment with cagergot but no results, so I got in a very big depresion, now I'm having prozac and lorazepam for my depression and now I'm having valproico acid (an antiepileptic) no results at all, well my pain is the same but the eye drops has stopped, but when I have my attacks I have to inyect my self (I hate nedles) sumatriptan and sometimes stop and sometimes doesn´t, I really don't know if this inyection really works but is what I have now, my deppresion is getting better since my mother found this place so I can see that I'm not the only one with this problem and there are more persons that can understand what I feel when this demon attacks. Thank everybody and sorry form my english. love for every body
Hi-I am seventeen years old and a senior in high school.
My father has suffered from cluster headaches since I was
in 7th grade. Not a single day goes by that he does not
get a headache. They became so desabling that he is on
disability a cannot work. He has tried every drug
imaginable to bring the problem under control. Each
time he goes to the doctor, he's perscribed something
stronger. He even has to take blood pressure medicine
because the headaches make his bloodpressure go
through the roof. What if they run out of new medicines?
It's so awful. A couple of times a year he has to go
to the hospital and get a shot. Twice, however, he's been
in the hospital for a week or more. Once it was a result
of an allergy to Sansert and the second time they never
found out what happened. He had extreme nauseating
headaches al day. By the end of the day he dehydrated
and too weak to stand. After spending half an hour
trying to roll my father out to the car on a chair, my
mom and I took him to the hospital. After sitting in
the waiting room of the ER for a couple of hours, a
doctor came out and told us that my father had stopped
breathing for a while. They didn't know what had
happened, but he was okay. After spending two days in
the ICU they shipped my dad to John's hopkins. AT this
world reknown hospital they figured out exactly squat.
What's left? Six years of at least one headache a day
sounds so hopeless. how can I help him? Who else can
help him? how can he help himself?
-a worried daugther
Hello fellow Clusterheads! I started my fall cycle for 1999 on the 16th of Sept. Until I found this site today, the 14th of December, I did not realize that there were so many of us. I've been dealing with the fricking beast now for nine years. He's an ugle SOB that must be stopped. Let me share something that worked for me last fall. I was perscribed Sansert 2mg one TID x's 10days, Depakote 250mg one TID x's 10days and Decadron one daily x's 7days and then every other day x's ten days. This completely kicked ass last year and I went nearly 9 months without another CH. This year I started the same tx but the demon seems to have changed his song. Note for what it's worth: I've been told by a neurologist not to mix Sansert and Imitrex. So, I've stopped the Sansert in order to abort with the Imitrex (works good for me). I'm glad and excited to see that there is a site where I can turn for support and advise. Many of the experiences I've read in this site are pages from my and my wifes life. She's not a Clusterhead, but you know she's suffering right along with me. Tonight I'll say one for us all! May peace be with you all.
First, I wanted to welcome you all to visit the Sam Houston Headache list. I'm the manager of this non-profit, no spammers allowed, list which has been around for five years and is for sufferers of all types of headaches. This is not a replacement for this site, it might be beneficial to those, like me, who aren't sure what sort of beast their personal one is, as all sorts of headaches are discussed. For more information write me or else to subscribe send a message to: majordomo@lists.shsu.edu
In the body of the message write:
"subscribe headache"
Personally, I'm visiting your site once again, still wondering what sort of headache I have and thought I should sign in here to visit the message board. I am helped by drinking a lot of water although never as much as I've heard some people manage. I also use Oxygen daily. I seem to have multiple onsets of headache pain. I'm trying a new drug, Bellegral-S, taken continuously which is actually an old drug and I thought it worth mentioning as I think it is one of the better things that I've tried.
Best wishes for a Pain free Holiday season for all,
Bev S.
http://home.satx.rr.com/cpf/index.html (Home page of the Chronic Pain Forum)
I have finally found you good lord. I see you people REALLY know whats going on. Love to know I have a home here. I feel like you could explain these headaches to some one a million different ways and or times and they would NEVER understand. Well I wanted to get started looking around but I know its important to get in the guest book SO, here I am ** I dont know what we ever did to deserve them but must deal with them I guess** P.S. my history will follow (right now I'm at work I need more time) :-)
Hello--
I am a CH sufferer of 22 years. I am a 38 year old mother of two. My CH's started when I was 15. The worst part of these monsters is not being able to make people understand what it's like. I have had to pull the car to the side of the road to wait for one to pass. I have had to call babysitters for my children while I was having one. I've had to leave family gatherings, even the ones in my home, because it makes people uncomfortable to see someone writhing on the floor in agony. I have been known to carry an e-tank of oxygen with me to dinner, to the theater, to work. . . .
I am an episodic sufferer. I have been known to go two years in between episodes. I always hope they have gone away forever. So far, no such luck.
I have had head xrays(looking for tumors), have been given Inderol, Caffergot, and Percodan. (At least with the latter, I didn't give a damn about the pain!) Oxygen therapy helps, but I moved last year, and I don't have a regular GP to write the scrip now.
I am in the middle of a cycle that began right before Thanksgiving. I'm beginning to refer to this as my fall cycle. My h/a's are located on the left side, behind my eye and in the sinus area. Leading to helpful advice on how to treat sinus headaches. They last from 30 minutes to a couple of hours, sometimes with only a 15 minute break until the next one appears. I wake in the early morning with them frequently, but have been known to get them while driving. I wish I could find a trigger other than my life. I don't drink or smoke, nor does my husband, so I am not exposed to second-hand smoke.
My CH's seem to come with maximum stress. The holidays are always a guarantee, as are final exams(I'm a full time college student). So, late fall--early winter is a sure time for CH's. Add to this another move we'll make right after Christmas, and I guess I should have expected the visit from the Monster!
My father suffered from migraines when he was in his 20's and 30's. My sister has CH's also. Mayber there isn't any real documentation on family traits, but mine has it's share.
Thank you for the site. I'm not alone. That thought is a help when the Monster has me in it's grips!
Hi! 20 years ago I thought I had a severe sinus condition. 10 years ago we diagnosed cluster headaches. Not much change in treatment then! If only this site had been there then. Mine are 3 days in a row on one side, then 3 days on the other side. Mostly trigemminal symptoms--butning nostril, postnasal drip, intense focussed pain in sinus, around and behind eye, temple. Sometimes inner ear, teeth. Also down neck into shoulder. My daughter's are the same only 2 days. Caffergot used to get all three days if I took it at the beginning. Now it only does one day at a time. Zomig works, but only for 4-5 hours. Imatrix and Amerge knock me out too much but OK for when I don't have to work. With careful diet, low sugar, no citrus, chocolate, caffeine (!), MSG, nitrates, alcohol, minimal estrogen HRT,the attacks are down to every month or two. With virus attacks and headache, (recurring now for 2 months), I have had migrane with it every week. I am worried that I am coming to the end of being able to use Caffergot--I know it is hard on the kidneys. Luckily, I can use 1/2 dosage, and usually 1 1/4 pills will stop the pain in 1/2 hour. Sometimes I can take it two days in a row, but usually I have to wait 2 days. I know you can get hooked, in the sense that the caffeine in the pill triggers the next headache. That is when I use the Zomig, to space out the Caffergot. I think I can tolerate once a month use of Caffergot, but this once a week is asking for trouble. I will ask the doctor about O2.
I'am 52 had these for most of my life, the last 2 years has been heaven, had a number of starts but would never go full blown, Thank God, I don't use alochol and try to nap early every afternoon, just for a hour or so. Off all meds they were killing my kidneys and all kinds of other promblems. I try to keep my self at ease don't allow things to worry me put my faith in God, For me that has worked. For all of you out there keep the faith a cure will be found.
I am a little stupid tonight
How do I enter a message on the message board
Think this comp is acting up
Thanks.......Bill
Hi, my name is Toby, and have suffered from H/A for 6+ years. My neurologist first diagnosed me with classic migrianes. After years of taking every new med that came out, and the migraines only getting worse, The neuro changed my diagnosis to basilary artery migraines.(BAM) In Sept. of this year he started me on topamax. The H/A went away, but I started to have some very bad adverse reactions. My asthma was out of control, as well as uncontrolable coughing, ended up with two hernia surgeries in three weeks time. I also developed blisters in my mouth. My husband called my neuro, asking for help, because after going off the topamax the H/A came back full force. He also said he had forgotten to tell me about his new diagnosis, he says on top of having BAM, I also have C/H. Most of the wonder drugs that are on the market today will help one kind of the H/A's but makes the other type worse. I feel so traped, in this nightmare. If any of you have any ideas, please let me know. Because of my remote location on this planet, there aren't too many neuro's to choose from. And the ones that I have been to, well... lets just say their egos take up most of the exam room. And they also know that those of us that are suffering, don't have much to choose from, unless we go out of state.
I'm sorry to unload so much, but it is the first chanch to share with others, that feel the way I do. Thanks So Much
Have ben in the "cluster chat line" but no company
Is there another chat sight for CH ?
I am 68 and still fighting the CH althow they have been
miled this fall so far thanks to prayers to St. Jude
thanks for posting this website on ch. having suffered only a few months with this pain, its great to have a place to go to for some "mental" relief. i will check this often.
thanks, allen
I have suffered from Cluster Headaches for fifteeen years without any relief. Last year, the neuro started me on lithium, which seemed to help, but I ended up in intensive care after cr arrest and enchepalitis. At 29, I want to start a family but am really scared of not being able to take any form of pain killer during pregnancy. Does anyone have any input for me? Thankyou, Laura
I am a 29 year old cluster migraine suffer. I am a woman contrary to the popular belief these occur mostly in men. I have been experiencing these clusters for 15 years to long. I started my freshman year in high school. I can still remember that first cluster. No previous experience with them, no one else in my family experienced these, I thought I was dying and my family was devasatated at the fact they couldn't do a dam thing. To this day I know it still devastates them when they see me like this. I guess all of our families experience part of our pain. Not the physical as we suffer, but the emotional helplessness that effects us all. Well I am 15 days into my cluster, I have already missed 7 days of work, due to migrains and medication, and I think my boss thinks I am wacked because "I just have a Headache, what's the big deal." By the way I am a third grade teacher. Not a great experience for your students to see their teacher jumping up and down, clenching her fists, eye drooping, tears all down her face, and then her running out of the room not to return for a few days. I have some good news, At least I am hoping. I am on my daily medication rituals of Verapamil. Prednisone, and of course imitrex, and I have just completed a twenty four hour headache free day. My shortest ever was two weeks, my longest about thirteen weeks. Heres to hoping!! Just to mention this is my first time writing on the guest book, I have been mainly sticking to reading the site. It's great though to know I am not alone. The first time I ever checked the site out I cryed uncontrollable for a good hour just knowing maybe this time with this site it may be a liitle easier.
I am 57 now, I began this miserable adventure at the age of 35. For the past 4 1/2 years I have been in remission and I truly thought they were over and done with. I could even enjoy a glass of wine without agony. Last week they began again with a vengence - to make up for the past 4 1/2 years of pain free living. Just for the heck of it I did a web search on CH an found this site. I was so relieved to find people who really know what a headache is. Strangley enough my brother was also a sufferer - currently in remission, and my 90 yer old mother also suffers from them. So much for them going away. Through the years I have tried almost every drug there is to try. Lithium (Lithobid) has had the most effect in blocking them. I used to inject DHE but my Doc has given me Imitex now and that seems to be fairly effective if I shoot it as soon as I feel the twinge. Years ago I found cocaine to be fairly effective. For those of you outside the US, you can get a cocaine ointment which you can push up into you nose. I actually met a Doctor who was from England and he was doing that for himself. I was led to believe that they dissapear as you get into your 50's or 60's. I thought for sure I had reached that point but boy was I wrong. I started getting them at seasonal changes but gradually became chronic - suffering year round. They went away following a severe cluster that lasted for almost two years. Just went away. I guess I am about to walk the road again. At least now I know of this site and of other sufferers. I am hoping that this will be a short cluster but my past experience leaves me little hope. I have just returned from a visit to the Doc and I am reluctently going back on Lithium - I hate the side effects. I hope that at least it works for me again. I'll keep you all in the loop.
Hello again, My name is Al, Im 53 and did say a few words earlier in the week about having these awful headaches for 11 days. I finally saw my family doctor today. I had a appointment for 1pm but decided to get there a little earlier like 12.30 to find out what was going on inside me. The secratery told that the doctor should shortly be in. I asked if the Hospital released my records yet. She said no. I said its been a few days, can't they fax you. She said their fax machine was down. That was not what I wanted to hear but I was patient and waited for the doctor. He checked my blood pressure and took my temperture and listened with his stethascope and told me I am getting better, to finish out my perscription and that I should be fine. I told him that hospital doctor told me I had C/H and what should I do for them. He said that he didn't think I had a case of C/H"s and If he didn't call in 2 weeks, to call him and he would let me know more after he gets my files from the hospital. I was hopping to here something better than that. One good thing did happen, my head is still in one piece... Peace..Al
I was wondering if anyone has had any experience with Viagra and cluster headaches. My husband was keeping the cycle at bay with prednisone and during sex with Viagra, he experienced an acute headache attack at the end. It went away after a couple minutes and was not a cluster. However, he did go into his cycle withthin two weeks and had not been in one for a couple of years.
This the first real information other than the doctor's spiffed up and horribly shortened versions I've been able to see, read and understand. i'm right in the middle of my twice a decade attack series as i'm writing this, so this was a great site to find.
Hello, I'm 25 and have suffered this horible nightmare for about three years now, and am just now learning what I know(thanks to this web page, not the dozens of doctors and thousands of $)I am a little saddened to find out that I may suffer this pain for a lot longer. However I feel a little lucky that I don't have the HA's as frequent, usually one a day episodically. I wish everyone the best of luck with fighting the demons. I myself have so far found a little relief with Imatrex nasal spray, and a little with Midrin.
I have suffered from CH's for 7 long years now and i know what everyone is going through....I hope and pray that some day there will be something that the doc's can do to prevent these things from coming...I would also like to say DJ, you are doing one fine job...I know that i always have somewhere to go when i am battleing the beast.!
I am female, 41 years old, and have been suffering from these h/a for 13 years. Initially diagnosed as migraines; received confirmation of cluster about 6 months ago. great physician; who prescribes prednisone to break the cycles (1 - 2 week cycles every couple of months); and long-acting morphine to prevent break-throughs. Have tried all the triptans, no luck. Preventatives now are Indocin, Periactin, Caltran,and Depakote. Mixed success; but the preventatives have slowed what was a chronic, daily cycle for years down to the 1 - 2 week cycles every couple of months (thank God). It is now 2:34 am; in the midst of an unusual cycle that has lasted about a month; debating trip to the E.R. (8 KIP pain scale with vomiting/nausea). Thanks so much for this site. Thought I was going crazy ! The KIP description of a 10...thoughts of suicide. Had 'em, just have always been afraid to mention to the doc how bad these things are, and as a result the crazy things you think about when it looks like the pain will never end. All I could picture was him calling for the psych ward guys to take me away. It's so hard to describe to anyone else; that you will do ANYTHING, ANYTHING, to make it stop......oh, please just make it stop. O2 helps prevent h/a from escalating;and if caught early enough- may keep pain levels down. Pain begins with tingling in the back of my head; shoots like a long nail being pounded through my skull to a spot over my right eye; sometimes spreads to right temple; then cascades over the whole right side of my skull/scalp. This site is a gift, DJ. It's good to know you are not alone. Off to the ER now, I think. I've had enough. Cheers, Julie
What a great site. I have been a migrainer for 18 years, with the symptoms becoming worse in March, 1998, having them daily. I was diagnosed with cluster/migraines in October of this year. I have had days where the demon has struck 12 and 13 times a day for 30 to 40 minutes. As a migrainer, I was using 360mg of propranolol sr for over the last year. I have used all of the triptans to try to abort both kinds of headaches. I am currently weaning off of the propranolol , started Neurontin 300mg 3 times day last week and am starting verapamil sr120mg daily as of today. Since I started the Neurontin last week, I am no longer having the attacks all day long, only late in the evening and early in the morning. This is a great improvement over what has been occurring. I have been to this site 3 times and have found a lot of good information. I hope my experiences help someone else in the same situation.
Thanks for being here.
This is such a great site. I have suffered from CH for about 17 years. I have not had a session for about three years. I thought that maybe the beast had left just as mysteriously as it began. No such luck... it is back again! When I searched the web to see if there was anything new, I came across this site. It is such a relief to find others who understand what you go through in these attacks. When I read about the beast leaving by draining down through the neck, I almost lost it...who would ever believe that story if they had not experienced it!
I am very typical (from what I read) usually start in November and last 4-6 weeks. Sometimes it will reappear around springtime. They start slow and build.I guess that I am very fortunate that it is eposodic. My heart goes out to those who have the chronic condition.
Over the years I have tried many things, but usually end up just "toughing it out" unitl it is over. that leaves me numb and exhausted. I am in the middle of a cycle right now and my doctor prescibed ZOLMIG - Zolmitriptan. I usally wake up with CH about an hour after going to sleep. The past two nights the Zolmig knocked out the CH in about 15 minutes. What a relief! I have not experienced any side effects. I keep hoping that I have found something that works for me, but time will tell. I have had other medications with which I have good initial results, but seem to become ineffective or just "hit or miss"
Be well my fellow sufferers.
Bob
I have been a cluster suffering since I can remember and I am now 41 years old.
My period for headaches is September and October and this year I did not get a headache at all over the fall...but last Saturday night (12/4) I got one. I got another on Sunday night (12/5). The medication that worked for me during the fall was Verapamil and thank God I had one left for Sunday night. I just refilled my prescription for another month. These things are horrible and I cannot figure out why all of us are "so blessed" to have to deal with these god-damn things. Because over the fall I didn't get one I thought for sure I was out of the woods, but definetly not so. I blame the weather for many of mine. Lately in upstate NY where I live it has been disgustingly mild for December with temps at night around 50 degrees. It feels sticky and it has been hard to breathe and sleep. At least I'd like to think that when it finally becomes cold like it should, maybe these headaches will go away but who the hell knows with these episodes. Obviously for me I am learning that I can get them other times of the year besides the fall. For 15 years they came late summer/early fall...but this year I seem to be getting them as an early Christmas gift. Just how I want to spend the holidays...smashing my head against the closest wall I can find for 15-30 minutes. Merry Christmas!
I have been suffering with clusters since 1957 and go back to the days when cafergot suppositories were the best thing around. Thank goodness for Imitrex and Amerge. Finally something that works.
I'm 53 and now suffering from c/h day 10 with pneumonia as a bonus. I can't believe how intense a headache can get. Does anybody know If these c/h come back later in life after having them? I can't imagene having this another day, nevermind having it for years. Could someone please write me...
I am 60 yrs of age have had these horrendous attacks for about 30yrs. After a real bad episode I went ER I thought I was having a stroke-finally diagnosed after after 30 yrs.
Verapamil helps and now Imitrex pills.Occur exactly 2 hrs after falling asleep. This Web site is great-Keep p the good work.
Guess I should have signed when I first came to this site about a month ago. Forgot. Opps!
Sean
I am new to this headache thing. Up until 3 months ago I never was able to understand a Migrane let alone one that will wake a person up in the middle of the night. I am 31 and have 4 yr old twins and a 18 month old. My husband is TRYING to be understanding. I am TRYING not to beat my head against the wall to loudly at night or get cranky over the headaches. Most of the time the headache is just "there" but like clockwork, WHAM! 4 a.m.
I am sick of swallowing pills, sick of gettig coddled by doctors and sick of "I don't knows".
I am at the point now where I MUST function. I don't have a choice. If I am left alone and the headache flares up during the day I can't go hide. I can't call my in-laws (they start asking STUPID QUESTIONS) and tell me to take an Excedrin and drink some water and then tell em to "call back if it's not better"
So I am here to hopefully learn from mistakes and victories and learn how to manage this monster that is living in side of my head.
Thank you
Peggy
I am 59 years old and have endured episodic cluster periods for 25years. It was not until I was referred about 15 years ago to a Dr Kudrow (headache specialist, now retired,and a fellow cluster sufferer)) from Encino Calif that I was diagnosed with clusters.
Since then I have managed with oxygen (7liters/minute) and verapamil and ergotaf. The oxygen will abort onset w/n 5 minutes. A regimend of verapamil 4xs a day and 1 ergotaf at night prevent recurrence during the cluster period. I have been VERY fortunate that these techniques work. Also, as I read the letters of fellow sufferers I realize that I am fortunate that my cluster period last only several weeks, generally once a year (altho I did skip a year once and went two in a row without onset); i pray for remission with age as I expect everyone does. I never realized such pain existed. Thanks for listening. TJH
Have been suffering from clusters since November 1994. Recently enetered into a study using the medication TOPAMAX and it seems to be working. Have been relatively headache free since August 1999.
I've suffered since 1991 after a oral/nasal operation that I thought was due to sinusitis that has always attacked the left area of my face. However last week my doctor diagnosed that I was in fact suffering from cluster headaches and as everyone will agree that suffers they are excrusciating to say the least. The only problem I have is that they seem to have moved from the January\February time of year to the November\December time of year and occur daily for a couple of months which is particularily inconvenient as I have just started my first year at University as a mature student. Due to the severity of the current series of attacks (the worst to date) which are slowly building to a level of three to five a night I have been unable to continue with my studies and have not attended lectures for two weeks due to the feelings of fatigue and listlessness that I am experiencing. Hopefully now that thwe diagnosis appears to be correct maybe a course of treatment can be administered.
Heres hoping
Mike Smith. York UK
Thank you very much D.J. For a while I thought I am the only weird one who have all this crazy pain but now I know I am not the only one out there. This site you've put up is by far the most informational that I've seen. I haven't read all the material yet cause I've just been hit. This site is already on the bookmark, I will keep in touch. Thank you again.
hi all,i'm 41 and have had the brain crushers for about 20 years.i have had some periods of remission i think of a few years.iup until a few years ago i only got them in july, but this year i got them in november i thought i was home free,oh well.i have found that nothing works all the time and sometimes the rebound headaches are worse when taking too much medicine or various other side effects make it so i just don't take anything.the most enoying thing to me is all the people that think its just a headache!i used to walk around and hang out in doorways holding up the building,but now i find the thing that helps me the most is sitting in the bathroom. rocking ... no rolling.... i lean on a pillow and wrap myself in a blanket..... i must look like a lunatic.....well i am a lunatic... the things that go through my head are jumbled... i just didn't think anyone could understand....i also find a cold rag gives some diversion for a second... hey a seconds better then nothing right?man the bathroom is such a mess in the morning. i blow and throw the tissues... i thought they were done but yesterday i got a "mild" one i am praying they r gone... one more thing.... last year when i was in pain land {i am not a religious person] i was begging for relief out of my seeing right eye i saw a vision,the vision without speaking,thank you...told me i would be ok.....they did go away for that year..... i think it was jesus, but it could have been jim morrison{from his beard days}anyway try not to bang your head and try to laugh as much as possible. oh maybe take a tylenol! yeah right.. peace
Hey to all other clusterheads. I have suffered with the Beast for about 13yrs and as I am sure many have, I to have popped, shot, and snorted anything and everything the Dr. would give me.My episode 7 months ago took me as close to the edge of self destruction that I ever care to go,then was suddenly averted by a Dr. who gave me a shot of Solu-Medrol (125mg), and started me on 40mg a day of Prednisone. I was sure the man was God as my headaches ceased. Bad news arrived about 3 weeks ago when I awoke with an attack grabbed my O2 mask and prayed for the pain to stop. Straight to my new found healer for my shot and Rx's knowing they would again save me from the Beast, but they only worked about a week. Now I am doing 80mg a day Prednisone,Imitrex shots & tabs,Oxygen, and whatever else I can get to work. I am terribly depressed about the turn of events but finding this website sends new hope to the fact that we are not as alone as we feel.Thank you all, I can feel the shadows so I must leave now to avoid dancing with the Beast.
I am a sufferer since I was 17 (now 48). In the beginning, nobody knows Cluster headache. It was a odyssee from doctor to docter. And no help. Now, I can treat the headache (Imigran: one injection and the pain stops within 8 minutes). Just now, I have finished a cluster with a period of 9 months, the longest in my life (normal 2 months). I hope, it was the last.
I have just see your website, and it is good to know, I am not alone.
Excuse my bad english and good luck to everyone.
I have been reading everything I can about cluster headaches on this site for the last 2 hours. What a wonderful site!! I feel such sympathy for all you sufferers. My mother is the one with the headaches. She is 82 years old and they just started 3 years ago (3 months after my father's death and the first time in her life she lived alone.) I feel so bad because we thought it was stress related, lonliness induced, all those things and we never realized just how much pain she was going through. She has had a few pain free months in the last 3 years but none for at least a year. She gets up 2 to 3 times in the night and her headaches go between 2 and 8 times a day. She has tried several medications and some have helped get the time of pain down from 45 min. to 20 min. but none have stopped them completely. I have printed out almost all of the information that was provided and I think she will be very grateful to know there are people who can understand what she is going through. The only thing I can add that has helped her is when I spent the night with her after cataract surgery and she was up with her headaches, I massaged the bottom of her feet. I learned this years ago from a health-touch practioner as a way to aleviate sinus pressure. I found a place on the bottom of her foot that would hurt when I pressed on it. When you find the spot, it is very painful and that spot would not be painful at other times. I massaged that part of her foot very hard for about 30 seconds and her headache seemed to be alleviated almost completely. At least the unbearable pain when instantly away. Everytime I am with her, I do this and it seems to help. Unfortunately, I am not with her always and I wish she could find something to help on a daily basis. Thank you to all of you and I hope you find relief to your clusters very soon
I have been suffering from Cluster Headaches for 16 years. Two years ago I went through a two year remission and I thought it was finally all over. Much to my dismay,they returned again - this time in Winter instead of Spring. I could always tell when my cycle was about over when I got them in the spring because the leaves would be coming out on the trees. Now I have no way of telling in the Winter and it's frustrating. Right before I began getting the headaches, I experienced (during the Spring only) feeling cold like symptoms and achiness. When those symptoms went away after two years, the cluster headaches started. I was misdiagnosed several times and told that women don't get cluster headaches. I am amazed I didn't kill myself from the pain during this time without proper treatment and medication. I, too, bang my head against walls and rock uncontrollably while hitting my head and tearing at my hair. I can't stand it when migrane sufferers swear that their pain is worse. The only time, besides my two year remission, that I did not get cluster headaches was when I was pregnant with both of my children. I tried to get birth control pills thinking the change in hormones would prevent my headaches, but my dr. refused to give them to me based on my theory. Finally, I have found relief in Imitrex and ice cold ice packs that numb my face. I am a right sided sufferer and swear my eye is melting in it's socket during my attacks. There is no pain like the pain from a Cluster Headache. No one will understand unless they experience it. Great web page! I wish it was around 16 years ago!
Hello All.....well if your reading this,sorry.i mean, if you are then you suffer just like i do,and well i know how you feel.its nice to know there are other people who understand the pain i suffer from ( no its not just a HEADACH )thats what people think.If they only knew the pain we have to deal with and the affect it has on our lifes.well my friend i fell for you and understand what you are dealing with,i can only hope yours will go away and never come back,as i do with mine.but until then the party goes on!!!!!!i've had mine only 3 years know and they normally start in dec.so i'm waiting????!!!!they last until feb or march then go away til dec.i have headaches through out the year but nothing like the clusters.the only thing that works for me is the imitrex shots$$$$$$$$$ oh yeah love those trex shots...never leave home without it.well thanks for listening and keep fighting the fight,we can never let the devil win,all we can do is support each other and educate the public on how this demon can affect a person life. may they never return,thomas
Hey fellow sufferers. I just found this place and it is so sad to see you all here. I was hoping that I was the only one who wanted to pop his eye out and see what was goin' on back there. I'm just starting my 5th cycle. I've had them for about 7 years. The clusters seem to show up every 12-18 months for about 4-6 weeks. My first two cycles were treated with tylenol 3's, pretty funny huh? I think I ate about 200 of those candies per cycle (5-6 weeks/cycle). My next round went for two weeks before I started on prednisone (a blood thinner) and it worked!!! for the rest of that cycle. The fourth cycle started and I rushed out for my Rx and then it didn't work. I talked to the Dr. and he said there is a new thing out there that was being used to treat the clusters...I eagerly said "Gimme some!" from behind the O2 mask. It worked again!!! So now coming into my next cycle I still have a few leftover bottles which I have taken yet because the intensity isn't there yet. This is the first time I have been woken up from them in this cycle. But I have the sinking feeling that I will be using it in short order and I am praying to the almighty that it works. As much as I hate doing the drug, I'll do anything short of blowing off my head to get rid of this curse!
The new drug is called Migranol made by Novartis it is a Dihydroergotamine mesylate nasal spray (5-HT1 Receptor Agonist). It smells and tastes horrible (don't snort the stuff into the back of your throat after you have taken a dose or you'll puke). You do a few primes with the pump and blast it to your sinus cavity and poof! 10 min later it's gone....for about 12 hours...then ya gotta do it again. If you use this stuff I hope you have a medical plan cuz MAN! that stuff is expensive. (It cost me $450 to go thru a cycle with that stuff).
The cluster was explained to me to be a dialation of the blood vessels on the affected side (the sore neck is the blood vessel dialating). I have looked for triggers, patterns, diet, sleeping patterns, everything that I could think of...there are none that I could identify. I'm sure it's not environmental or diet or I'd have 'em all the time. Not environmental (ie. pollen, mold, location)because I have been in two different provinces and different latitudes and different seasons of the year. I've had 'em spring, summer, fall, and winter. My eating habits have not changed in the last two years, nor is there anything new in my diet...they just happen. To me that says that everyone that is looking to those things is lookin' in the wrong place. It seems to me that it is physiological/hormonal,the only thing that these blasted bouts have in common are the pattern of occurance (every 16 months or so) and duration 5 or 6 weeks until they are gone. Can someone point me to the reset button? So I'll keep yall posted on my progress as we go through the cycle. Ill let ya know how the Migranol works from the beginning of the cycle, I'll probably be blasting it in a few days, so look for the next posting.
What about getting some research on this stuff, I'll sit in a Dr. office til I get one...we can do MRI's, PET's, blood tests to check for fluctuations in hormone levels etc. I wanna know where these things are coming from!
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You partner in suffering.
Mike
Great site! A CH sufferer as far back as school (25 Years) and tried every drug and treatment going. Found the best for me is (self administered) Pethidine 100-200mg plus Imigran Injection. Pain to clear after drugs 10-15 minutes. Problems? Getting the drugs as Pethidine is controlled. Absolutely fabulous GP and Consultants here in Oxford on our NHS. They are life savers! Find the 'shotgun to the head' comments so real. I've said many times that if guns were accessible here in UK, cluster sufferers would rather shoot their pain out than suffer it. Is it true CH is nicknamed the suicide headache? Still, at least we all know it WILL stop for a period and then we can enjoy life. That's worth living for at least... Just one thing that I would like to say about getting the right treatment is finding the right Doctor! If you work together to understand the pain and the life problems it brings, Doctors really will spend time to get your individual treatment right. And it pays...
It starts with a dule throbing sensation on the side of my tempel then without any warning the pain is there i have found myself banging my head aginst the wall trying to creat a new pain that will make me forget the pain im in for a while i have found myself sitting with a shotgun to my head thinking that this is the only way to make it stop thank god someone else found me like that as well even though i cursed him then i thank him now or a least till i find myself waking up with a nether one but then agine i try to not sleep i go for weeks at a time cat knapping to total body shut down but thats disturbed from another headache ive done this since i was 15 years old im now 33 and nothing has changed the pain is still there and i fear it will be for life
Kenn DeWitt
Glad to have found this site. CH for now seven Years, episodic and at the moment in the midst of a cluster near the top. Terrifying!
Love to all. Andreas (engl."Andrew")
chs have had me for about 14 years,2 to 3 months at a time around the clock.Realy think this web is a class act.
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