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ClusterBusters

DreamerOfDreams

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Posts posted by DreamerOfDreams


  1. I agree with HurtsMyHead. O2 is such a well known treatment for cluster sufferers that for your PCP not to prescribe it (unless there is a very specific reason not to) calls into question his/her knowledge about the condition and any other recommended treatment. Find someone who is comfortable with the condition and can refer you to a specialist.

    (Long shot but...any chance you're in New England area of US? Is so I can recommend a great neurologist in the MA area. )


  2. Have an argument with my wife and need some data if possible. Anecdote if not.

    Background:

    I am finishing a long cycle for me (6mo) which was particularly hard. Started the cycle by busting for the first time. It seemed to work for two months then the beast strolled in and he was pissed off. Then on Verapamil and O2 and finally am off verapamil (last week) and have been pain free for 4 weeks with only one shadow.

    My question to y'all:

    As alcohol is a trigger I often test that my cycle is really done by having a nice glass of wine or two. No headache, wait three years or so for my next cycle. My wife is worried that alcohol could prolong my cycle and wants me to wait (esp until after a big family event late October). Does anyone have any evidence or anecdote of alcohol causing longer cycles vs triggering a headache during an attack??

    Any thoughts much appreciated. I don't care about the alcohol so much as it's a marker that I don't have to fear the beast anymore. I so desperately want to box away that fear until next cycle. But I respect my wife's worries and desire that I not unnecessarily prolong this particular nightmare.

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