Hello all,

I first heard the words "cluster headache" at my ENT's office yesterday when we were trying to figure out why, after a negative CT scan, I was still suffering from such debilitating headaches radiating from my sinuses behind my right eye.  He had previously performed extensive sinus surgery on me, including a polypectomy of some of the "most massive polyps he's ever pulled out of someone's head".  I had thought for years that these monster polyps, along with my anatomically jacked up sinuses were the reasons behind these horrific headaches that radiated from behind my eye, wakeing me up in the middle of the night. 

My earliest memories of these attacks were when I was living and working in New York City in my mid 20's.  I was getting woken up every night or so for a couple of weeks by intense pains behind my right eye.  I remember consulting a Dr. about, not only my inability to breath from my nose because of my sinus issues, but the intense pain I was feeling behind my eye.  He brushed off the sinus stuff as a simple sinus infection and when I confronted him with my "eye pain" he replied bluntly, "eye pain!? What the hell are you doing talking to me about eye pain?  You should be seeing an eye Dr.!"  Needless to say, after THAT appt., all I knew is that my eyes were healthy. 

Fast forward 10 years, before my sinus surgery, and I was still suffering from this hot poker behind my eye sensation that would wake me up for nights in a row.  Thinking this was sever sinus pressure, I would jump up from bed and walk around the house hoping my sinuses would drain and the pressure would subside.  Naturally, the pain went away after 10 or so minutes and I went on thinking my painful headaches were symptoms of my sinus condition.  I figured that since they were happening around late summer to early fall every year then it must be because of allergies.  And night time would be naturally be when they would hit bacause I would be laying down, allowing my sinuses to fill up instead of being able to drain. 

Fast forward another couple of years and a few weeks out of the before mentioned sinus surgery and the pain returns with force.  Need I mention that this was around the end of summer, beginning of fall?  At my follow up appt. with my ENT I mentioned this pain to him and he suggested it was damage done to the occular nerve from a somewhat invasive surgery and that it would heal in time (as nerves often do).  In the meantime, he said, he would prescribe me Gabapentin, which in an anti-convulsive that is often prescribed to calm nerve pain resulting in trauma to said nerve.  Well, it worked wonderfully.  Unfortunately, about 20 minutes after taking it every night, I could just about fall asleep standing up; with the sleepiness lasting well into the early morning.  At least I had relief and, after a month or so, I didn't even need the Gabapentin...until about a year later.  I called my ENT's office, made an appt. and left with renewed prescriptions for Gabapentin and Flonase.  Again the Gabapentin was effective, but the side effects were difficult to deal with and my Dr. didn't feel comfortable with using Gabapentin as a long term fix.  So, I was without it since last fall, but I had no pain, no headaches, and no sinus problems all summer.  Until about 6 weeks ago.

About a week before going on vacation to the USVI with my wife I popped out of bed around 1:00 am with that all too familiar eye pain.  I grabbed at the right side of my face, paced around my bedroom and begged my wife to get me some tylenol from the downstairs pantry.  This scene repeated itself for several more weeks until I finally met with my primary care Dr and we both figure that my sinus polyps were back and the reason for my pain.  He prescribed me Flonase, thinking it was sinus related, and Gapapentin for the pain, at my request.  When the Flonase was unsuccessful, the pain came back with fury.  It was pissed.  Every night, around 11:00, then 1:00, then sometimes, 2:30, I would be woken up by this indescribable pain behind my eye that radiated upwards to my eyebrow and lower behind my cheek.  While the sensation was familiar, this time it was so much more intense.  The Gabapentin wasn't working like it used to.  Tears would begin to stream down the right side of my face and I would need to physically pry my right eyelid open to navigate my way down the stairs to fetch whatever drugs would alleviate my pain.  Before, the pain would go away relatively quickly.  This time, it wasn't going anywhere.  I let my primary care know that the Flonase wasn't doing anything and he moved me into a prednisone pack.  No suprise, it was great.  For 8 days, I could sleep; I had no pain.  Well, night number 9, I finished my prednisone pack and my alarm clock headache came back.  Everyone reading this knows the sensation, so I don't have to tell you all how painful and debilitating the episodes are.  So I'll just say they continued.  Every night, same time, greater in intensity.  I didn't sleep at all and battled a minor bout of depression.  At my witts end, I scheduled an appt with my ENT expecting, and hoping, that he would find and schedule surgery to remove, polyps all over the right side of my head.

That appt was yesterday.  After a negative CT scan, he just about threw in the diagnostic towel until I frantically started listing symptoms.  As I was rambling/begging, looking for an answer, I saw him write down MRI and Cluster Headaches.  To that end, he prescribed my Imitrex on a "hunch" and my MRI is scheduled for next Wed.  Since then, I have scoured the Internet for information on cluster headaches and find myself reading definitions I could have written over and over again.  It's been like reading your own biography.  I'm not one to promote self-diagnosis, but I'm confident that I've finally found some answers.  After the MRI, I plan on following up with a neurosurgeon in town that specializes in CH.  If I can at least verify what I've been going through, then I can figure out how to cope.  And that's why I'm here.  Sorry for being so long winded; I've never been able to vent this story to anyone who would understand. 

By the way...No headache last night.  After work, I stayed indoors, didn't drink beer, and went to bed extra early.  Figures I didn't even get to test the Imitrex.  I'll let you know tomorrow, I have faith the beast is still lurking.

ASSUMING you have Cluster: the major problem is finding a doc who has good training/skill/sophistication. The training received by neurologists is strikingly limited and probably less so for other specialists. Studies have shown that many folks take years and multiple docs before find good treament, ergo, we push, right off the bat, finding a headache specialist.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.


2. 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.

3.  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.

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

5. 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.

6. 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.
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Please don't expect us to Dx: this is far too complex an area of medicine. It's striking how many disorders mimic Cluster and so a good diagnosis is essential.

Some good advice above, but I'm not assuming at all that the sumatriptan you have is injectable. Is it? Or is it pill form? The pill form may, and I stress may, act as a preventative but it sucks as an abortive. Too slow. Read everything on this site you can. Make yourself an expert in CHs. The more you know, the better you will be able to assist in your treatments. Most docs know very little about CHs and many have never seen a client with CHs. We who live with them every day know what they feel like, what hasn't helped, and what we'd like to try. A good doc will work with you. Find a good doc. God bless. lance

Crummy imitrex pills landed me in the hospital 1 time. Got a "hung" attack.....just would NOT go away. Didn't have anything better til later when I got me some injections. Anybody have similar?