Occipital Neuralgia and other Cranial Neuralgias For discussion of Occipital Neuralgia, Glossopharyngeal Neuralgia, Nervus Intermedius (or Geniculate Neuralgia), and Vegal and Superior Laryngeal Neuralgia. (Trigeminal Neuralgia has its forum below.)


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Old 09-09-2010, 01:11 PM #31
tessavee tessavee is offline
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Default McLovin

I got my PCP to send me to a Neurosurgeon. Prolly cause I was writhing on his floor crying. Neurosurgeon is doing a full scar MVD this Monday. He thinks there may be trigeminal involvement as well. Wish me luck!

Tess
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Old 09-09-2010, 03:49 PM #32
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Default cant get enough sleep!

day 7 in my ramping up of triliptal and I am so drowsy!!! I am afraid to drive. only go to grocery and bank.. i feel like i am a hundred..
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Old 09-10-2010, 12:02 PM #33
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Default Hi Katie!

Sorry about your diagnosis. I have been living with GN for 3.5 years. Had a one year remission but when it came back in June, it came back in a big way. I am lucky enough to get surgery on Monday and hopefully, I will be a good statistic. As in cured. I can't live on the meds and they really don't work well anyway. Right now I am on tegretol 800mg and lyrica 300 mg. I haven't raised the dosage in 2 weeks so the effects are nearly gone and I am going on my 3rd really bad day in a row. I feel like I am at toxic levels already with double vision, balance problems, and difficulty finding words. It is difficult to drive and basically to live a normal life. I have been off work since the 16th of August. Surgery is my only choice.

Anyway, welcome and I hope for luck with the meds.

Tess
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Old 09-10-2010, 02:40 PM #34
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Default good luck to you

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Originally Posted by tessavee View Post
Sorry about your diagnosis. I have been living with GN for 3.5 years. Had a one year remission but when it came back in June, it came back in a big way. I am lucky enough to get surgery on Monday and hopefully, I will be a good statistic. As in cured. I can't live on the meds and they really don't work well anyway. Right now I am on tegretol 800mg and lyrica 300 mg. I haven't raised the dosage in 2 weeks so the effects are nearly gone and I am going on my 3rd really bad day in a row. I feel like I am at toxic levels already with double vision, balance problems, and difficulty finding words. It is difficult to drive and basically to live a normal life. I have been off work since the 16th of August. Surgery is my only choice.

Anyway, welcome and I hope for luck with the meds.

Tess
good luck hop all goes well keep us updated!!!
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Old 09-13-2010, 11:54 PM #35
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Hoping and praying that all went well today. Hopefully your recovery goes better than mine. Since my MVD I have had trouble swallowing food and have had considerable voice loss. Found out that I have a paralyzed left vocal chord. I have a follow up appointment next week and will go from there. I couldn't eat in the hospital following my surgery and could barely drink anything. I think this made my recovery much harder. It wasn't until the last day in the hospital that I was able to take any pills. The good thing is that I have felt no pain from GN or TN.

In a couple more days I will be completely off of my medication, which is just about as good as being pain free. I have been out of work since the end of June, but will return in two weeks.

Let us know how you are doing. Good luck!!
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Old 09-14-2010, 12:06 AM #36
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Originally Posted by katie1cross View Post
day 7 in my ramping up of triliptal and I am so drowsy!!! I am afraid to drive. only go to grocery and bank.. i feel like i am a hundred..
End of June, my boss pretty much told me that I could not work until I was off the meds. The Trileptal was really rocking my world - worse than it ever had. Fortunately I had already started planning for surgery. With me, it got to the point that the meds were almost as bad as the pain. What was weird was that they messed me up more physically than they ever had. I simply could not function in a normal manner with them anymore. But, they were much less effective in controlling the pain. I always said that I would fight it with the pills as long as I could so that I could avoid surgery. But now that I have had the surgery, I look forward to not having to take the medicine almost as much as I look forward to being pain free. That's saying a lot because the pain that I had was unlike anything that I have ever experienced. How much meds are you taking? I was 2400mg Trileptal / 4800mg Neurontin per day. Hopefully you don't have to approach those levels. Good luck.
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Old 09-17-2010, 11:51 PM #37
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Default meds

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Originally Posted by McLovin View Post
End of June, my boss pretty much told me that I could not work until I was off the meds. The Trileptal was really rocking my world - worse than it ever had. Fortunately I had already started planning for surgery. With me, it got to the point that the meds were almost as bad as the pain. What was weird was that they messed me up more physically than they ever had. I simply could not function in a normal manner with them anymore. But, they were much less effective in controlling the pain. I always said that I would fight it with the pills as long as I could so that I could avoid surgery. But now that I have had the surgery, I look forward to not having to take the medicine almost as much as I look forward to being pain free. That's saying a lot because the pain that I had was unlike anything that I have ever experienced. How much meds are you taking? I was 2400mg Trileptal / 4800mg Neurontin per day. Hopefully you don't have to approach those levels. Good luck.


i am to work my way u to 2400 of triliptal... the side effects are slowing me down so i am at a stand still till my stomache settles,,, i am now being worked up tfor M.S. also.. scary *****.. i am not at work but hopeing to get back as soon as i have some relief.. so far not working. at he end of the day it is excrutiating pain and through out the day if triggered same results... Doc has considered adding another drug but will not discuss it until we are up to full dose of tripiptal... hope you are felling welll could yo discuss more about the surgery and the recovery time you expect...
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Old 09-17-2010, 11:59 PM #38
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Question question about cognitive issues and meds

I have also been having cognitive issues with the start of meds... no short term memory.. hard time with word recall and speech is stumbling often.... anyone else have these issue....? i am in healthcare with high stress and high need for in depth cognition.. this is scaring me for my future employment issues...
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Old 09-18-2010, 01:41 PM #39
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Quote:
Originally Posted by katie1cross View Post
I have also been having cognitive issues with the start of meds... no short term memory.. hard time with word recall and speech is stumbling often.... anyone else have these issue....? i am in healthcare with high stress and high need for in depth cognition.. this is scaring me for my future employment issues...

I had trouble with speech when I was on the medication. My MVD was on August 9th. I was in pain for a few days afterward with some headaches. But, that was expected and paled in comparison to the pain I had before the surgery. I am fully recovered from the MVD. I have no pain and will return to work next week. I had a misconception that I would feel great immediately after the surgery. It wasn't as easy as I thought, but again, well worth it.
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Old 10-12-2010, 08:56 PM #40
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Originally Posted by kotter View Post
I would love to talk to anyone about this condition. I have had it for 2 years. Please email me if possible,**.


i have had this condition for 2 plus years and would love to talk if you would
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