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Old 04-03-2009, 03:26 PM #3
JudyM JudyM is offline
Junior Member
 
Join Date: Mar 2008
Posts: 12
15 yr Member
JudyM JudyM is offline
Junior Member
 
Join Date: Mar 2008
Posts: 12
15 yr Member
Default Hi Andy

I was diagnosed with TG 5 years ago. I was very fortunate in that my doctor diagnosed it immediately and he put me on amitrypline (sp?). It seemed to dull the pain, so I thought that was the best I would ever get. I had a couple of episodes a year until 2007 - the medication wasn't working and I was getting multiple pain at once - to the point where I couldn't talk.

I went to my new doctor and asked to be put on carbomazapine. I had to go on it gradually, but it worked - thank goodness. The thing with this medication is it made me sleepy and groggy - I felt as if I was a bit tipsy... I couldn't go on feeling this way every day (I had TG almost every day in the year) so I asked to be referred to a neurosurgeon.

This neurosurgeon literally saved my life. I ended up having a Balloon Compression. It flattens the nerve - but there is a 40% chance of it coming back. I had it done in March 2008 and so far so good... If I do get the pain back, I will get the procedure done again.

One thing with carbomazapine is that when you do go off them you must wean yourself off - you cannot quit cold turkey. It is too much of a shock to your body.

With your job, it sounds as if you have to be on your toes at every moment. You may want to be careful on how many of the meds you have to go on.

For me, the surgery was the best thing I ever did. I was in and out of the hospital in 1/2 day. I had to spend 5 days resting, but that was it!

Good luck to you!
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