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   Author  Topic: First time poster, long time sufferer  (Read 265 times)
kittyswan
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First time poster, long time sufferer
« on: Sep 24th, 2003, 5:44pm »
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Hello all.  
I was diagnosed about 2 years ago and still haven't found relief. I have tried several prev. meds and nothing seems to work. I am just now i think coming to an end of an cycle. I am on the 5th day and today hasn't been too bad. I haven't tried O2 yet but I go to the neuro Friday and I am definatly going to ask about it. I was wondering if anyone else has problems taking other medications. See the deal is, I have a tumor on my puituitary gland and have been perscribed med to shrink the tumor. Every type of med they have perscribed me has put me in a cluster frenzie. At first the doctors thought it was a coincidence but after the third attempt they are agreeing.
 
 Roll Eyes  swan
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Cerberus
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Re: First time poster, long time sufferer
« Reply #1 on: Sep 24th, 2003, 5:54pm »
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Swan,
 
  Well, hrmmm, the double whammy....drag. You've come to the right place for the clusters. I'd say the best that I can offer as far as advice goes anyway, is get the O2 if it works fer ya then hey great........otherwise you gotta be a guinea-pig like the rest of us. I'm not a doc or a neuro so I can't offer much else as not to aggravate your situation. But Welcome just the same, stick around mebbie there is someone here with something else to tell ya.
 
hope you find relief soon,
Ramon
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Re: First time poster, long time sufferer
« Reply #2 on: Sep 24th, 2003, 5:57pm »
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Don't ask for O2...DEMAND IT!   ;D
 
Welcome aboard Swan!
 
There are certain meds that trigger attacks for some people.  I know of no complete list, and I have personally not had any added attacks from meds.  Keep reading and don't neglect the preventatives!  I too have tried several preventatives to no avail, but I assure you that I have not come close to trying EVERYTHING out there.
 
Be well!
Chris
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kittyswan
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Re: First time poster, long time sufferer
« Reply #3 on: Sep 24th, 2003, 6:05pm »
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Thanks Guys.  There's gotta be something out there that will work for me. Now I am just scared to try new meds afraid what I might wake up with in the middle of the night.
 
~Swan
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Miss_Deleny
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Re: First time poster, long time sufferer
« Reply #4 on: Sep 24th, 2003, 6:20pm »
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Welcome Swan! Sorry you had to hunt for us but sure glad you found us  Smiley
 
Best thing I can tell ya is to READ, READ, READ and READ some more. I'm sure there is something there for you.  
 
Wishing you PFDaN's,
~April~
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Re: First time poster, long time sufferer
« Reply #5 on: Sep 25th, 2003, 6:49am »
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What MsD said -- Read Read REad and go to your neuro armed with literature. Don't know what will aggraviate your other condition, but you're right - something WILL work for you - you just have to find it. Like the rest of us - it's trial and error.  
 
Welcome to Clusterville. We're here to help and all you have to do is tell us what you need. We've got support, information and whatever you need to get through these things. We DO know how you feel and we've all been where you are at one time or another.  
 
We wish you nothing but lots of PF days and nights.
 
HUGS  BD
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