HA's and managed care - how to get help?

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Posted by Drew ( on September 21, 2001 at 10:38:52:

Hi all,

I have been lurking here off and on for about a year and a half. Started my first cycle in spring 99 and had a couple month remission. My second cycle started in fall 99 and I have been chronic since. I mostly get them once a day - at night or wake up shortly after going to sleep.

Anywayz, I have been through 2 primary care docs, a neurologist, numerous MRI's, a sinus doc (who says I have sinusitis and wants to do surgery - I THINK NOT!!) and an allergist. One of the PC's was kind enough to turn me on to Imitrex spray, but HMO won't cover more than 6 dose per month, and my HA are daily. I found that Imitrex just gave me rebound HA's and stopped using it. Only thing that works for me is exercise at first sign of HA, and that only works about 50% and usually just delays the HA until i fall asleep. The rest of the time it's hit the floor. I have found standing on my head (really!) helps, but that is only temporary, like pounding your head relief.

When I am having an attack, my heartbeat gets very slow and irregular - pulse doesnt match up with heartbeat, skipped beats, etc. Sometimes I feel like I can't breathe when I am on the ride.

I have not been able to convince doc or HMO to get an O2 script, and have had difficulty finding any doctor who will recognize and treat as cluster HA, NOT migraine. They try to put me on amitryptaline - which DOESNT work. I have all but given up. Now I am trying to convince NEW PC that I NEED TO SEE A HA SPECIALIST and am having difficulty getting a ref.??

No doc has tried verapimil, prednisone, lithium or anything else. WHat is wrong with the medical community?

To make matters more interesting, my fiancee and I separated because she couldn't take the HA's any more. I am worried my job will be next.

Seems to me that going for a psychedelic trip is about the last thing to do in this situation, but I am intrigued by the shroom treatment. I would consider this after trying other options, but HOW DO I GET THE DAMN HMO AND DOCTORS TO TREAT ME???? I don't really feel like revisiting my teenage drug use years (I used to trip on acid and shrooms when I was a teenager - probably what fucked up my serotonin levels in the first place).

Those of you who have had some success...did you try other treatments first and what was the result??I am particularly interested in lithium or other treatments that may provide long-term period of off-cycle.

Another thing, I recently developed a severe reaction to alcohol, which I didn't (i don't think) have before. I can not drink even one beer or anything else or I will be floored within 30 minutes. I have stopped drinking altogether and now experiencing shadows and mild attacks during work, which never used to happen. I am really worried about my job, and I am really worried about my mental health as well. This is so damn depressing.

Any help thanks!


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