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Old 09-13-2009, 04:24 PM #1
Saffie Saffie is offline
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Hello Everyone. I am new here and would really appreciate your advice.

I was diagnosed with TN last year. I'm 38 years old. It has been a rollercoaster year. My MRI scan showed inflammation and I have been told that is causing my pain and there is nothing surgically that can be done. It will be a case of managing the pain with medication.

I'm currently taking 1800mg Tegretol and Tramadol as and when required. I'm permitted to up the dosage to 2000mg Tegretol if I need to.

I'm still working full time but to be honest I think my days of doing this are numbered. I'm in a constant haze most of the time and still suffer from the dreaded 10 out of 10 zaps occasionally. I have to be very careful eating as that is still a trigger and I have lost a lot of weight due to not being able to eat on bad days.

I would appreciate any help on managing this condition, as at the moment I'm feeling low, and can't seem to see any light at the end of the tunnel.
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Old 09-13-2009, 06:39 PM #2
mean laureen mean laureen is offline
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Hi Saffie. This is also my very first time to post anything on this site. Your message caught my eye because I just turned 39 and can relate to you. I have been dealing with this terrible condition for about 2 years but it got really bad for me this past year. I was in and out of the hospital 4 different times in May and June. In May I had the gamma knife procedure done. I felt good for about 2 weeks and then it started again. On June 19th I had a microvascular decompression surgery done. The surgeon found that I had large veins compressing my nerve and he removed them. I felt wonderful as soon as I awoke from the surgery (as far as the pain in my face) went. I am still doing wonderful. I had a flare up of the pain about 8 weeks after surgery but the surgeon thinks I was weaning myself off of my medication to fast. It really scared the heck out of me though and I still worry every day that it might come back. I'm still trying to wean myself off of the medication but I'm taking it super slow. I'm still taking 1000mg tegretol, 2100mg neurontin and 200mg dilantin a day. What would be causing the inflammation that the doctor sees on your MRI? Did they say? How long have you been dealing with tn? Mine is in the third branch of my face that affects my eating also. There are several procedures that are used to treat tn. Maybe you could look into one of them. Anyway I hope you can find something to help you.
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Old 09-14-2009, 08:39 PM #3
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Default Welcome saffie and laureen

Hello to both of you, and sorry you had cause to find your way here to this forum. There are lots of caring, thoughtful folks here so just keep checking in and I'm sure someone will come along soon to offer more support.

I have been dealing with TN pain for about 8 years and was diagnosed about two years ago. I am one of the lucky ones (so far) that my episodes are still very sporadic and I do not have to take the medication on a regular basis. I take only 200 - 400 mg tegretol when I have an episode. I have Atypical TN where as i don't have the electrical shocks, but just a constant hot boring pain centered in my right ear and the immediate area surrounding the ear, with intermittent ice pick stabs at 30 sec. intervals. This in itself sounds horrible to those who are not familiar with TN - but to the rest of you I've got it made. My best pain relief comes from applying heat to the side of my head, but to some this may make things worse. If you have read some of the other posts here you will see that there are others that use heat as well.

There are a few success stories in here regarding surgeries that have went very well. If you have not read the "stickies" at the top of the first page of posts, you may want to do that there is a lot of helpful information there to help you.

Sorry that I am not more help, but don't give up, and do know that there are others who care and are sending you positive thoughts and pain free wishes.


Good Luck!
Rhonda
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Old 09-15-2009, 10:08 PM #4
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Welcome to you both.

This is a great place to meet people, isn't it? You two have found a common bond here.

TN Sounds really, really bad.

Here is the link for TN:

http://neurotalk.psychcentral.com/forum26.html

There's a lot of info to research, so if you need to know how to get around, just let us know. We're here for you both.
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Old 09-23-2009, 04:43 PM #5
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Quote:
Originally Posted by Saffie View Post
Hello Everyone. I am new here and would really appreciate your advice.

I was diagnosed with TN last year. I'm 38 years old. It has been a rollercoaster year. My MRI scan showed inflammation and I have been told that is causing my pain and there is nothing surgically that can be done. It will be a case of managing the pain with medication.

I'm currently taking 1800mg Tegretol and Tramadol as and when required. I'm permitted to up the dosage to 2000mg Tegretol if I need to.

I'm still working full time but to be honest I think my days of doing this are numbered. I'm in a constant haze most of the time and still suffer from the dreaded 10 out of 10 zaps occasionally. I have to be very careful eating as that is still a trigger and I have lost a lot of weight due to not being able to eat on bad days.

I would appreciate any help on managing this condition, as at the moment I'm feeling low, and can't seem to see any light at the end of the tunnel.
Hello, Saffie

I have TNA already more than 21 years and took the medications, mostly Tegretol XR, because it works the best for me. Also, I try any other things about which I have read or heard, nothing was helpful, only the one - neuragen helps me now. I apply it 4-5 times a day, I continue to take the Tegretol but was able to cut the dose from 4-6 tabs (200 mg) to only 2 a day. I consider this as a big achievement. I read also about another treatment - zostrix (one guy uses this with a big help), but did not try yet. Both are not medications, they are made from plants. It's possible to buy them at pharmacies.
So, I think it's worth to try because to take such medication as Tegretol or Lyrica... bring you to take them more and more and will not help in some period of the time.

Nata
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