PLEASE, IF THERE ARE PEOPLE THAT ARE GETTING SOME FORM OF TREATMENT THAT HELPS, PLEASE, PLEASE, LET ME HEAR FROM YOU. NEW MEDS NOT WORKING. SYMPTOMS WORSE, NO HELP FROM THE NEURO WHAT SO EVER AND MY DOC HAS TO DO RESEARCH FOR THIS, I AM HER FIRST PT WITH THIS AND IT IS RARE. SHE ASKED THE NEURO FOR TREATMENT OPTIONS, ALL HE SAID WAS PAIN MANAGEMENT. THAT IS NOT GOING TO CUT IT!!!!!
THEY HAVE GOT FIND SOMETHING TO MAKE THEM STOP. I AM NOW FALLING FROM THEM, THEY HURT LIKE HECK, I AM EXHAUSTED BUT STILL HAVE TO WORK FULL TIME AND MAINTAIN SOME KIND OF LIFE. IF IT NOT FOR KNOWING GOD AND THAT HE CARES, I MIGHT BE REALLY TERRIBLE DEPRESSED. MORE THAN I AM NOW. I AM LOOKING ON THE BRIGHT SIDE, KNOWING IT COULD BE WORSE. JUST EXTREMELY FRUSTRATED. ANY THING WILL BE DEEPLY APPRECIATED. THX NAWNIE
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HELP WITH ISAAC'S SYNDROME
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2 replies
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- By rickthurbon
- Posted October 16, 2009 at 6:31 am
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Gday Nawnie
I have talked with you before I know its very hard but there is no quick fix to Mr Isaac as many have said before its like riding a roller coaster.
Two things your Doc might want to try I am not sure if you have not tried already.
1. Front line used for years by many Docs Treating Isaacs
Tegretol it might take weeks to kick in but proven to work in many cases just dont expect to work straight away.
2 Amitriptyline for me and many others my Doc is treating it does work for pain.
Email me and I will give you a link to a board that your Doctor can look at there is heaps of good info about Isaacs more in one place than you will find anywhere
else.
I wish I could offer you a magic bullet but at the moment there is none so you have to work with what we have got.
Many of us have been where you are dont give up there is hope and you will improve.
Rick
Sydney Australia
- By DgufoInspire
- Posted November 8, 2009 at 7:52 pm
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Nawnie,
Ask for Diamox (a sulfa diuretic) also if you have not tried it yet. Its pretty safe and can mix with the anti sodium channel agents like Tegretol or Lyrica etc.
Dr David
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