In March 2006 I was diagnosed with Tolosa Hunt. I have n...

1. Guest 1 October 2006 at 10:37AM
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   In March 2006 I was diagnosed with Tolosa Hunt. I have never had headaches until now. I went to my family doctor and he thougt it was a sinus infection, but when the pain never subsided afer treating me for the sinus infection and saw that my eye was twooping,he decided to send me to a nearuorolgist and she ran alot of test on me.I have severe headaches it feels like sinus headaches, but it start on the side of my head at my right timple and it affects my eye and sinus cavity.It's a very gnawing ache. After a couple of weeks my eyelid began to droop and my vision got bad. My doctor started me out on a very high dosage of steriods and she has reduced this since. As of today I haven't been able to decrease anymore than that due to the headaches coming back. The Steroids work. They keep the headaches from coming back, but the side affects of the medication is very depressing. I have the moonshape face and I have went from 134 lbs to 200 lbs. I feel so depressed right now. I wish there was a quicker cure for this. I will keep you up todate on my process. Maybe I can help someone oneday with this same problem...

   [i:2149051b68]This message was automatically imported from the original Patient Experience[/i:2149051b68]

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2. Guest 14 March 2007 at 12:08PM

   I would very much like to correspond with this person as her problems are exactly what my wife is experiencing.

   [i:170627c857]This message was automatically imported from the original Patient Experience[/i:170627c857]

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3. Guest 15 August 2007 at 22:49PM

   I had after 2 months of tests the diagnose of tolosa - hunt. In april my left face nervs fell out, in mai my left eye closed & i saw everything doublle and havy headaches. End of mai i got cortizones and the pain disapeared; in july my eye recovered, and now in august i still have a feeling between my eye and mouth like a bee stuck me !. On the latest scan end of july the neurologists saw that the white spot on my brains was still there and didn't increased or disapeared. Has anyone the same experience that the white spot vissible on the scan don't disapeare? Normally i stop taking cortizones end of august. But i'm very afraid to get it again .Any reaction is welcome flup from Belgium

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4. Guest 12 February 2008 at 05:39AM

   I was diagnosed wth Tolosa Hunt Syndome January of 2007 and since then I've been taking Predisone. My neurologist started me at high doses of 60 mg a day but I'm happy to say I am now taking 20 mg every other day. I've gained 30 pounds since being on the Predisone and coming off from it has made me feel very tired. One thing that I believe has helped me alot is exercising because compared to other people I haven't gained as many weight. I do have to say that working out is a challenge because I feel more tired than usual now that I've been on the Predisone. My doctor is bringing my dose down very slowly because last year about 5 months into the medication she tried to take me off quicker and the systoms of tolosa hunt seemed to want to come back. To give a little history on how it all started. My symtoms started with me seeing double in December 2006, I saw double for about 2.5 weeks and then the pain started on my head with drooping of my right eyelid and swelling. The swelling got so bad that I came to a point I could barely open my eye. My opthamologist said my 5th and 6th nerves of my right eye were damaged but of course at this point they still didn't know it was Tolosa. It was not 'til I was in agonizing head paid and running every test they could think of that it came down to my doctor telling me it was Tolosa. I've had 4 MRI's since being diagnosed and the swelling in my brain isn't there but I feel that if I stop taking the predisone it might come back because if I make preassure behind my eyes by closing them hard I can feel a slight pain in the back of my eye. I can sympathize greatly with anyone who is going through this and just know you are not alone. I just hope I can be done with all this soon so I can get back to my normal self.

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