So I walked into the ER yesterday with what I'm confident I can call a "Cluster Headache." 

A little context first to explain why I'm pretty sure of this. The pain is crippling, a gnawing, compound fracture-like pain behind my left eye. They feel like a pea trying to grow into a softball, and sometimes last for hours. The pain is so bad that I just writhe or pace. I get a blood shot eye. I've had them on and off for the past 7 years, sometimes going as long as a year without them, and when they come, I get them for a few weeks at a time. The pain is so severe at times I jut want to be put to sleep. I've had 3 MRIs done, and one of those MRIs I had done in the middle of one of the worst attacks I've had. They showed nothing out of the ordinary. No MS, no tumor, etc. Two revealed I had a sinus cyst but both my old Neurologist and my ENT doc say that wouldn't cause my headaches.

Okay so back to the ER room I walked into yesterday. I haven't had them in over a year, and have been getting slammed by them over the past week. I tell them I'm sure I'm in the throes of a cluster headache and tell them I think (according to online info) I want O2 to try to abort (I'd never tried O2, but in the past I had aborted by snorting Cayenne pepper, which eventually stopped working). Tried it for 15 minutes and nothing. So then they stop that and the nurse gives me an injection of Imitrex. My face flushed and went a little numb , and my head felt dulled, and it cut the severity, but didn't abort. Nothing profound happened. The Imitrex took the bite off my headache and made me a bit tired, but nothing major happened.

So any advice here? I got a prescription for the stuff, and went and dropped 2 bills on 9 of these tablets just for peace of mind, but I'm wondering if I'm running out of options. Do I even have clusters? What's a good alternative abort? Any advice would be great.

Get thee to a neurologist who specializes in headache disorders.

Brew wrote on Apr 28^th, 2011 at 10:00am:

Get thee to a neurologist who specializes in headache disorders.

I'm scheduled to see one next week. I'm also contemplating just finding someone who can give me a greater occipital nerve block.

OrthodoxHedonist wrote on Apr 28^th, 2011 at 10:38am:

Brew wrote on Apr 28th, 2011 at 10:00am: Get thee to a neurologist who specializes in headache disorders. I'm scheduled to see one next week. I'm also contemplating just finding someone who can give me a greater occipital nerve block.

Actually NO on the nerve block!  Maybe oxygen at 25lpm.  If you are diagnosed with ch.

               Potter

ONB's are VERY hit and miss. Find out if you have CH first.

Potter wrote on Apr 28^th, 2011 at 10:44am:

OrthodoxHedonist wrote on Apr 28th, 2011 at 10:38am: Brew wrote on Apr 28th, 2011 at 10:00am: Get thee to a neurologist who specializes in headache disorders. I'm scheduled to see one next week. I'm also contemplating just finding someone who can give me a greater occipital nerve block. Actually NO on the nerve block!  Maybe oxygen at 25lpm.  If you are diagnosed with ch.                Potter

What's wrong with a nerve block?

OrthodoxHedonist wrote on Apr 28^th, 2011 at 10:38am:

Brew wrote on Apr 28th, 2011 at 10:00am: Get thee to a neurologist who specializes in headache disorders. I'm scheduled to see one next week. I'm also contemplating just finding someone who can give me a greater occipital nerve block.

   If you're just looking for someone,  I guess I qualify.  I'm a pretty good Veterinarian.  You're chances of success would be about the same.

          Potter

Thanks for the feedback, all. I'm actually going to print this thread and just hand it to the neuro next week and see what he says. If it turns out I have CH, then I'll take all of this under advisement.

Potter wrote on Apr 28^th, 2011 at 10:44am:

OrthodoxHedonist wrote on Apr 28th, 2011 at 10:38am: Brew wrote on Apr 28th, 2011 at 10:00am: Get thee to a neurologist who specializes in headache disorders. I'm scheduled to see one next week. I'm also contemplating just finding someone who can give me a greater occipital nerve block. Actually NO on the nerve block!  Maybe oxygen at 25lpm.  If you are diagnosed with ch. Potter

I'm going to second all of the above. Especially the O2 flow rates. I found the mask and low flow rate at the ER to be a waste of time, but with the right equipment and technique, O2 was a godsend. Have you read the link on the left for directions on use? Also, there are lots of preventatives, prednisone for transition, and other abortives. Troll around on this site for awhile and take good notes, and bring that info with you to a specialist appointment. If it is truly a headache specialist, what you bring will be welcomed (or should be) because CHs are so intractable in general. Blessings. lance

I agree with all the others. Two cycles ago I came close to overdosing on Imitrex and had my wife run me to the ER. While there the Doc told me that Oxygen might help and set me up on a nasal cannula! Needless to say nothing happened and I never gave O2 a  second thought....UNTIL in desperation during this most recent cycle I thoroughly read the O2 info on this site and found out how little that ER Doc knew. Using the proper set up Oxygen worked as an abortive every time I used it.
As to the Imitrex, the pills work much too slowly for our needs as cluster sufferers (that was the reason I took too much and had to go to the ER)  You need to get the injectable or (my preference) the nasal spray both of which work within minutes. But really, once I found how effective O2 was the only times I used Imitrex was when I couldn't get to the O2.
Hope this helps you out! :)
-Gary

Pill form is generally not very effective for CH. Even the injection, O2, will not be as useful when given when an attack is well developed--has run on for a time.

Based on your limited experience (I gather from your message) with Cluster, you are not in a position to tell a doctor what you want/need.

Until you have given fair trials to the various meds we use--which have well established track records for effectiveness, cost/benefit considerations, safety, etc.--no form of surgery has become well established enough to justify considering them--certainly not as a first treatment.