First Post . Cluster diagnosis . Yes ...no ??


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Posted by Yazz on June 30, 1998 at 00:23:00:

Hello all . I've been meaning to get into the chat section for a while but I cannot work around that schedule .
My pain begun apprx 10 yrs on the right side of my face . Woke up one beautiful morning to a bad surprise . Right eye in so much pain that I couldn't open it , was tearing , and my right upper molar was in so much pain it was killing me . I thought I had an abcess in my right molar . Went to dentist, xrays , nothing .
Of course , over time pain went away . But when it came back . I had no idea what was hitting me .

To keep this as short as possible, I made the rounds of all doctors including accupuncturists etc .
Finally Neurologist .
That was three yrs ago .

Initially prescribed, very low dose of prednisone . Didn't work . Then Cafergot ( ergotamine & Caffeine )
worked like a charm overnight . Kept on taking the pills for 10 days and that was that . Pain was gone .

Now that I got the pains again about a month ago . I had to piece things together again .

Now , I have been officially been diagnosed by two separate Neuro's ( one in europe, and one in Canada )
with CH .

My questions to you are the following .

1. Does anyone else have pain going all the way down to their teeth ??Mainly upper teeth . ( the burning sensation in the nose I have also , together with the pain near and behind the ear etc . )

2. Do any of you experience the pain as soon as you wake up in the morning , as opposed to being woken up by it in the middle of the night ?? ( It used to happen to me . But not anymore ) sometimes it will take a few mins for it to begin .

3. Does your condition get worse by staring at the computer monitor , even for a split second at times ??( Sensitivity to light and noise )

4. Are the attacks affected by humid and damp condtions? Or going from a hot environment to a cool air conditioned room ?????

I'm trying to find the right answers to my problem .
Sometimes I feel the neuro is just using me as a guinea pig . Although he's been recommended in the whole city , and is chief neuro in one of the biggest hospitals in town . I find an absence of compassion on his part .

Right now , I'm on Verapamil ( 180 mg/day SR ) and Prednisone tapering off in about a week . I started exactly 1 week ago , and It's driving me crazy . I take it in the morning and by the time I get to work , I'm I'm shaking and find myself losing balance . ( I'm thinking how I'll be able to handle 2 X 180 mg / day , on wednsday for a month . )

The pains have gone since . But It seems when I sleep early it helps . My last bout lasted about one month . Long enough to spoil a vacation .

But fom the posts I've been reading . I'm having my doubts about some of the treatments .

Are we DOOMED ??

Since It's my first post . Go easy on me guys .

I'm a little wet behind the ears ... :))

Yazz


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