Hello Fellow Clusterheads,

I am new to this site but I am a long time sufferer. I'm going to apologize right up front for the length of this now because I already know this is probably going to get quite lengthy. Afterall, I do have 23 years to catch you up on.

I was 19 yrs old when my CH started and it took until I was almost 21 before I finally got meds. Even after being diagnosed and under preventive treatment, I was still having at least two clusters a year. I later found that meds just downgraded me to episodic as opposed to chronic. It took a 10 year lithium regiment but my clusters went from lasting 3-5 months to a somewhat more acceptable 6-8 week duration. Most of my clusters occur around the summer and winter solstices. In fact, I'm just coming off the most recent, first one since 2005, and the worst one to memory..I'll get into that later. I am chronic but usually stay episodic when medicated. Ive been taking Lithium pretty much from the beginning. Verapamil when I get a cluster complied with prednisone. Gave me topomax this time..did not work at all and the side effects were horrible.

I have been a clusterhead since May of 1991 and it took until 1994 to get a proper diagnosis. After 4 different doctors, and 2 dentists, I finally found an intelligent neuro who could properly diagnose me. Now you have to keep in mind that while you all know what its like to go thru these headaches, I did not have a HF day during the entire 3 year period it took for me to figure out what was happening to me. I was having anywhere from 3-5 a day with each one ranging from 7 and 8, most being 10 and lasting about 3-4 hours each on average.  Needless to say that when I was finally diagnosed, my neuro labeled me a chronic sufferer.  This was my introduction to the world of cluster headaches.

I always get mine on the right side and it always hits me in the temple the hardest, the hinge of my jaw, and that soft spot right in front of my ear are three spots the spikes are always driven. My right nostril closes completely as if a marble had been shoved into my sinus cavity as far as it could go. My right eye waters constantly and uncontrollably. I am incredibly sensitive to light, especially natural sunlight. I can't even tolerate sound when I'm at my worst. My headache routine is a very simple one, simply because most of the usual culprits don't work for me. Execidrine migrane at least 3-4, vicks nasal spray so I can breathe again. Try to stay in bed, preferably in complete darkness, an ice pack pressed firmly against the right side of my head pushing and pounding the hard corners of the ice cubes into each of my pressure points. I tend to trash uncontrollably, at times falling out of bed on several occasions. I even broke my pinky toe once and didn't realize it until waking up from the exhaustion that headache left me with. I read about the caffeine shots during an attack and I did try that...once. It hit me back threefold; came back at me so hard I nearly blacked out. Caffeine has always been a trigger for me during a cluster. Give me a cup of coffee in the middle of an episode and I'll have a headache and be down in less than 10 minutes. Imitrex injections work well but are super expensive, nasal spray works well too but can be just as pricey, especially without insurance. I'm fortunate my neuro keeps throwing me samples when I need them. I still have to evaluate when to use what I have though, cant use imitrex for every one, not with the frequency I have them.


I have never been the "normal" clusterhead with the regular signs, symptoms, or schedules. I have never been able to measure my headaches in minutes, its always been hours, clusters lasted years/months, not weeks, and now is no exception. I thought I was lucky being HF for so long but what I found out is the beast doesn't like to be at rest for that long at all. I can now measure my headaches in days and weeks. I don't know what it was this time but nothing worked, and when nothing works for me, I know each day is just going to get worse until it reaches its peak. Started meds Dec 4 right when they came on and I knew when the first round of prednisone didn't work I was going to be in trouble. That usually stops it if I can catch it early enough, which I thought I did. By Dec 12 and the second round of prednisone, I was having 5 and 6 a day, some 6 hrs, some 9 hrs, most of them being 7 and 8 with just a 9 or 10 here and there. I knew it was just settling in and this was just the warm up, it was too soon in the cycle for this to be the worst and this is what scared me. I had no idea what was coming but I never imagined what I got. It reached its absolute peak on Dec 20 and didn't release me from under his thumb at all until late Dec 27. It never went away completely..only let up to about a 4 or 6 at best just enough to let me kinda sleep. 15 min here...20 min there...maybe 45 min if I was lucky, before I'd get hit again with a 10 outta nowhere that would last at least 4 hrs just to remind me who was in charge. This is the dance that we went thru for eight days solid. Never letting up, never stopping, not for a minute. Nothing worked at all, oxygen, imitrex, this new topomax stuff, verapamil, predinsone..nothing. I've more than doubled my lithium.  Never in my life have I ever thought about how good that bullet would feel slicing thru my temple. Oh how it would feel sooo good. The one thing that would definitely and permanently make the pain go away. This is the reason I don't own a gun. You just never know what you really will do when it really does get THAT bad and you ARE that desperate and HAVE reached that very deep, dark place you never want to be. I still haven't fully recovered from that one, and I'm not sure I ever will. That experience changed me for sure. Last week wasn't bad but the two weeks before that were pretty much my typical run of the mill clusterhead hell. The worst part about it this time was since they never really went away, I never really went to sleep. I probably managed 20 solid hours of sleep in 5 weeks. They always came like clockwork, a couple times during the day and then usually all night long until morning. I don't know if its because I'm getting older or because the clusters keep getting farther apart but they are definitely getting worse. I'm only...well 1/2 day headache free. Had two whole days until last night but it was only a little 6 that lasted an hour. That's not a bad night for me, pretty much anything under a 7 is completely manageable at this point. I know I'm on the tail end of this one and all I can say is I really need this cluster to end. Its really taken a serious toll on me...mentally and physically.

That about sums it up. Again...Sorry to make you read so much but I warned you I had a lot to get you caught up on.

Thanks for your interest in my story!

Hey Smitty, I have the exact same pain, you describe it better than I do.  People don't believe me when I tell them the headache lasts for hours a day and the clusters were months before I found a remission.  I did the verapamil for a year, that stopped working and made me feel awful, heavy legs and heart palps, anxiety.  The cortosteroids work if I take them in a medroldose pack at the beginning right away.  I have to keep finding new ways to stop the cycle.  I'm on my 4th year now of these headaches and it sucks, I have one right now, had it for almost an hour.  I'm waiting for my doc to call me back or the pain to go away.  I wish these doctors would know how much this hurts, they all take so much time to respond.  I think way to often about how it might be time for me to take action and end the pain for good but as long as I have internet I'm not going there.

Strongly agree with Wimsey (i.e., Lance). Besides the significant gains in knowledge of treating Cluster is the possibility that you don't have Cluster.

See:


Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
=====
These two factors is a major reason for finding a headache specialist.
---
LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

I guess anythings possible. All I know is what happens to me typically on a regular scheduled basis and it always follows the same routine. Every symptom says cluster, always on the right side pushing the eye and stabbing the pressure points, droopy watery eye, congested nostril. I have a very good neuro who goes above and beyond for a guy with no insurance.  The biggest difference has always been duration of headache and clusters for me. They have always put me down for hours and yes, there have been more than a handful of times that if a gun were put in my hand, I more than likely would have used it. They most certainly have been that bad before, especially when I was younger. I never thought of the migraine theory, could explain the caffeine thing, that baffles me too. I only try to stay in bed because it has the most room for me to move and thrash around semi-comfortably, and its the easiest room for me to darken at any given moment.

I'd like to say I don't have clusters but I honestly don't believe that's the case. The new headache center wants to include me in a study sometime after they open so I'll keep you posted with that as it starts and progresses. I do appreciate you thoughts and opinions.

Thanks,
Smitty