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Pain is winning over the meds

Posted , 11 users are following.

karen36710
karen36710

I have had TN for 9 weeks now.  My meds have been upped ever 5 -7 days since I was diagnosed.  I am currently on gabapentin 2700 mg and carbamazepine 400 mg a day.  Every time the meds are increased the pain is dulled for two days and then the pain comes back worse than ever.  Has anyone had this experience?  Any solutions?  And my meds are spaced out during the day.  And I woke up with hives this morning, but the hives have settled down....I am continuing with all my meds and just watching for the hives very carefully.

1 like, 20 replies

20 Replies

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  • paul49262
    paul49262 karen36710

    Posted

    Hello

    It is finding the right pain relief that works for you and it maybe a cocktail of different ones.

    Our Daughter was diagnosed a few weeks ago and she is on carbamazepine with Tramadol and naproxen to top it up. However she has started going to Reiki sessions and this has helped her we are not saying that it will always help but it has helped with her stress levels and this has helped her to deal with the pain better.

    She is only 20 years old so this is very young for this awful condition, keep up with your own research and get to see a Neurologist as soon as you can, we have an emergency referral but it is not till the end of September although we phone almost daily to see if they have a cancellation but to no avail. 

    Don't give up and try whatever makes you feel comfortable in trying.

    All the best Paul 

    • dona40912
      dona40912 paul49262

      Posted

      Hi Paul,

      Does she have atypical TN or the normal one? Does medicine take away her pain? If she has the normal TN, then probably MVD would be a good solution for her.

      I am 26 and have atypical TN. Had a MVD which didn't work. Now taking a lot of different drugs, but still have very painful days. I have it since September 2015. Thought it is a tooth pain so first 4 months had a lot of work done on my teeth.

  • karen36710
    karen36710

    Posted

    Me again.  I am not doing well...my husband had to take me to the doctors again.....can not swallow or chew, plus I have cold sores in my mouth ....apparently this is from the TN....and I have hives.  Still on 400 mg of carbamazepine and 2700 of gabapentin a day plus prednisone for 7 days.  I am a mess.  I am waiting to see a neurosurgeon, on the urgent list but no idea how long that will take.  I Am now willing to consider the glycerol injections..
  • michael64483
    michael64483 karen36710

    Posted

    Having suffered for 19 years & 3 surgeries I have found tegretol / carbamazepine in doses of 600 to 800 mg daily works much better than the gabapentin. I use

    100 mg of gabapentin daily. You seem backwards from me, heavy on gabapentin & light on tegretol. I also prefer extended release tegretol to quick release chewables.

  • jackie30048
    jackie30048 karen36710

    Posted

    I was having really bad pain every 5 to 10 days until I sent all my info and symtems to a program called Prime in Lincoln Nebraska.  The program Prime is a bunch of specialist who look at all your symptoms and decide what program works best for you..  I saw an orthodontist, vision, and physical therapist.  I now have a lower splint that i wear while I am sleeping and periodically thoughout the day, they also gave me some exerices to do.  I have not had any pain since I started wearing the splint and I can sleep on my left side again.!!!!  I still take the carbamazepine twice a day but they hope that soon I will be off of that also.

     

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