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Glenna

Help! New medicine questions...

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I am a three year CH sufferer, 39, female, living in TN - the worst allergy area in the US - and am in my 4th cycle this year. On average, my cycles last 4-6 weeks starting light then intensifying to 8 or more clusters daily. Watery eyes, stabbing pain, no relief. I have taken Verapamil - 120mg. It did not work for me, keeping my blood pressure too low. Even though I have been followed by a neuro for years, throughout the duration of my clusters and migraines before that, not much other help has been offered other than a prednisone pack to get me "over the hump". I hate prednisone, but I can't imagine life without it.

I saw a new neuro yesterday, Dr. Kundu. He suggested we try a sleep aid first. Ambien did not work for me, so he went to Trazodone, which is technically an anti-depressant. While life is VERY stressful, depression is not an issue for me unless I am in a cycle. Then, I pray to die but I'm not brave enough to do anything about it. I took 50 mg last night.

Today, I am pooped! My heart is acting strangely. I think it's from the meds. I'll take it again tonight and should know for sure. Does anyone else do a sleep aid for help?

I do supplements: magnesium, melatonin. I take an antihistamine daily - Zyrtec. I am pumped so full of caffeine that heartburn is driving me batty. It is a very bad cycle for this time and though it is tapering, I am just very uneasy with this course of treatment since I can't find much to support it.

Help!!

Glenna

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Hi Glenna,

I just replied to your post over at ch.com, going into a bit of detail advising the high flow O2, Vitamin D3 regimen, energy drinks, and of course busting.

I think it's also important to note here that Dr. Kundu doesn't appear to know jack about treating CH.  :( :'(

I figure you'll wanna drop him like a hot Tennessee tater.  :D (I'm currently in TN too, so I'm giving myself license to talk like that  ;D)

Stay tuned - if you're lucky some fantastique additional advice will be forthcoming from CHfather et al.  8-)

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I read your other post just now. Ha!! I am definitely going to give it a shot. I think the same about Kundu.... He's not from Tennessee though so what does he know!  ;) I'll probably have to do the Chattanooga drive. No biggy. I'd rather do vitamins than meds anyway if I can. And I'm definitely going to work on the O2.

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I am just very uneasy with this course of treatment since I can't find much to support it.

Hey Glenna, one of the first places I started reading was at the main clusterbuster web page, before you click the link to the message board. There is a ton of info/research links there.

There are many more links to current research in the "Research and Scientific News" Tab on this message board.

There is so much out there to support this wonderful treatment for CH. I sincerely hope you will keep looking and asking questions, and learn more about this option for treating your CH. I hate to think of you suffering needlessly and frustrated by trying every whim your doctor throws your way  :-[

Wishing PFDaN to you!!!

Dereksgirl

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