Medication

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Can we take pretty much any of the anti-seizure medications for trigeminal neuralgia

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  • Posted

    Good question to ask.  Here's the deal..

    Each med affects everyone differently. If one doesn't work, another one might. There a bunch of different ones.  The doc will start with one he or she thinks is best and often it is.

    i had neurontin for about three months which I tolerated well and then it stopped working so we switched to oxcarbazepine which didn't work very well then I said, "enough!" And headed for the TN neurological surgeon. Now when it comes back, which it does every few years, they give me Lyrica until my next surgery. Lyrica works well but has side effects that I have a hard time with so I am glad when I can get off of it again...the surgeon gets me in as quickly as possible.

    many people do well with the meds and many do not. You just don't know until you try, but know that it takes a period of time for your body to adjust and to find the dosage that works. They usually start low and then increase it until you have the relief you need. Some folks need go pretty high, but the doc will help with all that plus you can find info on line.

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    • Posted

      Which surgery did you end up with i think my tn is neuropathy possibly i have tried about 4 different drugs they all have something that isnt great for a side effect. Muscle pain in a way from oxcarbazpine im on a very low dose an i take gabapentin about 900 mg
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  • Posted

    Different anti-convulsants have properties that affect the brain differently. On top of that, they affect individual humans differently. I had been taking Topamax (Topiramate) for seizures for 15 years when I suddenly developed TN a year ago. Now I take a low dose of carbamazepine for the TN, but I still need to take Topamax to block the seizures.
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  • Posted

    You asked which surgery....I did Radiofrequency which is when they stick a needle in your cheek or wherever and burn the exact nerve, into incompacitation. You wake up and only need one or two oxicodone for pain. The pain went away in a day or two and can function immediately.  

    The drawback is the resulting numb spot on your face it no one can see anything unless I try to eat. Because of the numbness, I eat like a baby..soft things that can fall on my face. So I use a napkin to hide my mouth and to keep the food in my mouth, etc.  I can't care about that tho because it is either that or suicidal type electric shocks in my face...mine is the jaw or lower trigeminal nerve.

    the surgery keeps me off drugs and out of pain, completely! No pain of any kind! Yay!

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    • Posted

      I can taste and eat fairly well BUT because part my jaw is numb, I can't chew very well... I CAN chew but nothing thick and hard. Meat is difficult unless I cut it into very small pieces.  I have a morning smoothly with berries ( low glucose content and veggies like spinach or whatever plus protein( - powder or I get clamswhich are soft) plus some cinnamon and unsweetened chocolate, blend it up and drink. I like it.  That way I don't have to chew at all.  Yogurt dishes are good, rice and chili, ground meats....etc.

      just had to change the way I intake food. If the food is big and hard, forget it!

      does that help?

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  • Posted

    My nerve is clearly in one spot...lower jaw so of course thought it was a lower tooth problem until I found out about TN. 

    The TN started slowly, went for years with only ocassionalnblips of pain. Then it started to become insane..like an electric live wire was stuck into my jaw. When it reached the point of nightly incidents of screaming while crawling on the floor and daily inability to eat at all, I knew it was time for a neurologist who gave me drugs. The first drug worked well for about 3 months...neuronto. The second drug did very little...oxcarbazepine.  Decided to find a neuro surgeon and discovered there was one here who specialized in TN surgeries. He prefers the Radiofrequency one.  It is the least invasive and can be repeated.  Some surgeries can't be repeated I found out.  They said they had just done a 90year old. I found this to be very encouraging since it is a lifelong problem.

    i believe we are pretty much screwed and it is simply a matter of finding the best option. Drugs or a surgery that can be repeated. There is no cure. If there is anyone out there who found a permanent solution with many years free of TN I would love to hear about it. But so far, I only hear about temporary situations. I

     

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