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Old 02-06-2008, 11:49 AM #1
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Confused Paratrigeminal Neuralgia and MS

Hi there...glad to be here! I was first diagnosed with MS in 1993 and have been in remission until 2007. In February of 2007 I was diagnosed with Paratrigeminal Neuralgia (Raeder's Syndrome) not to be confused with Trigeminal Neuralgia.

I have been on Tegretol 400mg for about 13 years and my dosage has been increased to 1200mg/day for about 6 months. I have also been on Neurontin 1600mg/day for about 6 months.

I have been experiencing symptoms somewhat similar to those of an MS relapse but my new neurologist says that my old neurologist has been overmedicating me and the combination of the two drugs is what has been causing my symptoms.

These symptoms include pain in legs and hands, muscle spasms in legs, neuropathic pain in legs and feet, Dysarthria (difficulty with speech), problems with equilibrium, extreme fatigue, severe vertical double vision, eyesight deterioration (which Opthamologist believes is related to MS).

I was originally given these meds to help combat the head pain from the Paratrigeminal Neuralgia and since my neuro has decreased the dosage, the pain in my head has increased but I have been told that giving me any other meds for my pain would "defeat the purpose" of weaning me off of the Tegretol and Neurontin. I have been told to live with the pain!

Is there anyone else out there that has had such problems with Tegretol and Neurontin? It did help with the pain in my head and I am still having "neurologic symptoms" even though my dosage has been lowered and it has been 1 month today.

I was under the "care" of a different neuro which prescribed the Tegretol and Neurontin and when the pain would increase or I would have a new symptom he would just increase my dosage!

Help me Please...I am feeling alone not only because of the fact that I have yet to find anyone with Paratrigeminal Neuralgia to exchange facts with but I have been thrown to the wolves so to speak in that my new neuro won't give me anything for the pain that is still very real!

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Old 02-06-2008, 12:29 PM #2
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a friend of my brother's had Raeder's.

they treated him with oxygen, as I remember.

and IV steroids.

but that was many years ago, so my memory is kinda foggy.

I also remember they were discussing surgery, to sever the nerve that was conducting the pain messages.

hang in there Pair, and I hope you find the relief you need.
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Old 02-06-2008, 01:25 PM #3
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Hi and Welcome to NeuroTalk. I'm sorry that I can't answer your questions, but hang in there and someone may come along w/answers.

I just wanted to say Welcome.
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Old 02-06-2008, 02:06 PM #4
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To Cayokay...I was also treated with IV Steroids and weaning prednisone twice but the benefits of the prednisone stopped halfway through the second weaning dose and the side effects didn't make it worth continuing...horrible stuff them steroids!

To Daisymay...thank you for the welcome and I appreciate your optimism! I have been searching for a year now with nothing to show for it and I am feeling very depressed at the moment...I have an appointment with my g.p. this afternoon and I have been planning carefully what to ask and what to say but now I seem to have lost my bluster and feel that it would be much easier to crawl in a hole. I know that pain will still be there after the appointment just as it always has so what is the point? Sorry to be such a downer but after all the lies, deceit and mistreatment I have had in the last year it is much easier to be a pessimist!
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Old 02-07-2008, 02:10 AM #5
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Hello and welcome to NeuroTalk. Great to see you have come to be with us. You will find a great number of caring, supporting members here willing to help each other as they can.

Again welcome, looking forward to seeing you around.

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Old 02-07-2008, 07:11 AM #6
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Hey,
Welcome to Neurotalk, if you need anything just ask
Thanks and welcome onboard
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Old 02-07-2008, 12:56 PM #7
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Hi, Pair! Welcome to NeuroTalk!

Your situation sounds nasty, like the neuro who told you to live with it. Sheesh.

Here's a like to our medications forum, your questions will get better attention there. Be sure to swing by the MS forum, it's busy and full of great people.

http://neurotalk.psychcentral.com/forum72.html
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Old 02-07-2008, 02:41 PM #8
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Hi Para .. (like Tara!)

I don't understand the pain everyone goes thru - and I don't know how to even explain mine ... but ... everyone's hugs are a help ...

always know that you can dump, shout and scream to let it out here on NT ... there's always a shoulder to cry or lean on here!! and hugs are always in abundance ...

HUGS to you!!
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Old 02-07-2008, 10:51 PM #9
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Oh you poor thing! What a sod to tell you that you had to live with that pain. Until I read your post I had never heard of Paratrigeminal Neuralgia, but it certainly sounds nasty, and I feel for you.

I too take an anti-epliptic medication for nerve pain, except the one I take is called Epilum in Australia (Sodium Valproate), but it's very similar to Tegretol and I daresay they do the same thing.

I've also been prescribed Oxycodone for those times when even the Epilum doesn't help the pain.

How dare that neuro take you off evrything, and leave you to suffer!

Mega cyber hugs coming your way.
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Last edited by Koala77; 02-07-2008 at 11:31 PM.
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Old 02-08-2008, 05:23 AM #10
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Hi Pair and welcome to NT!
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