Seeing a neurologist

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Hi everyone, I have been suffering with TN for about the last 15 years, and recently the flare-ups have been coming thick and fast. I am on 200mg carbamazepine, three times a day, and 900mg gabapentin three times a day. I also take 50mg amitriptyline at night. None of this works, and they all just make me feel so awful - particularly the carbamazepine, which is why I only take 600mg per day.  Well I have now got an appointment to see a neurologist next Friday(the 19th Novemeber 2016). Can anyone tell me what I can expect from this appointment? Is there anything I should do to prepare for this, or remember to mention etc. I'm 63 years old, and suffer with post-polio syndrome as well, although I don't think this has any bearing on my TN.

Thanking you all in anticipation.

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9 Replies

  • Posted

    I hope the neurologist you are seeing is a TN specialist....and has all treatment options available to him.  While I am new to TN I can not believe how people go for years suffering when MVD surgery is really an option that should be e plodded sooner versus later....and not as a last resort.  Good luck
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    • Posted

      Thank you so much karen. I have no idea if he is a specialist or not....Just hoping he is! I don't have an enormous amount of hope, but I have to say I'm all for surgery if it will work for me, even though I said I would avoid surgery at all costs in 2016, after being diagnosed with breastcancer in 2014, which meant a mastectomy in the same year, followed by a second one in 2015 and ankle fusion surgery last year as well...Lol!! Looks like 2017 might end up being 'my' year instead! 

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  • Posted

    I went off CARBAMAZIPINE and on to Oxcarbazepine as the side effects are less soul destroying and made all the difference to me. Once you settle one medication you are best placed to vary the others looking for a better result.

    The above is just a SUGGESTION and should only be done with your medical advisors full knowledge. Anecdotal offerings are no substitute for real medical advice. It worked for ME and may be worth a look at!

    I edned up on 2400mg of Oxcarbazepine and 600mg of Lyrica for the headaches. Once you get to that half vegetative status it all disappears into the fog anyway.

    Mine is now gone (for good I hope) after surgery for a NON TN related condition that just happened to change the world for me and so I got in quickly a rewrote the rule book for me as well. Now I call the tunes.

    Stay with the program, research the WORLD and if you find something that helps then follow it to the end.

    Adelaide in Australia is a good source of TN info as they have something like a center for excellence in the TN area I believe.

    I hope everyone can be as lucky as me and find their solutions

    Good Luck

     

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    • Posted

      Thank you Baudwalker, I am researching as much as I possibly can now, I think  I know more about the condition than my GP anyway(much like post-polio syndrome, which she had never heard of!)! Never a good look when your GP googles TN whilst you're sat in front of her!! I could have told her everything she told me, and more! 

      So pleased to hear that yours is gone(and yes, I too hope for good, for your sake!)

      I shall let post on here after I have seen the neurologist! Thanks for the 'good luck' I feel I'm going to need it!

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    • Posted

      That is EXACTLY the response I would appreciate from my GP!

      Most GP's DO NOT COMpREHEND TN (and variants) and if My GP started in front of me I would appreciate the honesty and get with her and give her ALL of the info you have found and keep the upskilling going.

      Most would mumble, write unintelligible scribble and make another appointment so they could check it out without being brave enough to admit it.

      ENCOURAGE HER / HIM? to learn and SHARE with you as well.

      Out with the whip, off with the blinkers and set off for wherever together and your travels will be most productive I am sure.

      Mine was this way inclined as well and we got the results after many many trials and failures.

      I am sure every little bit of info you and others can post will eventually righ a bell with someone else and help them on their quest for a solution.

       

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    • Posted

      Actually I think you're right! My GP could have just fobbed me off, and not admitted that she didn't know much about the condition. I have to say she DOES listen to me, much more than a previous one. We are working together on the post-polio situation, and have had some success with managing it. I hope we will eventually find a way to manage the TN, or even manage to banish it altogether, maybe with the input of the neurologist!

      I shall pass on anything that helps me, in the hope that it helps someone else too!

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  • Posted

    Hello There!

    I cannot even began to have TN for 15 years, Bless your heart. I have had it for a year. I take gabapintin 1200 a day and tylenol for arthritus. I am 62yr. old this month. I have seen Nurologist and the surgeries are just too risky. I go back in Nov. and see what he has to say. Sometimes I think doctors just wanna make all that money but ya just pray ya get a good one that genuinely really cares. I will remember you in my prayers and hope you are able to get some relief. I thought about raidiation but not sure yet. God will make a way. Have you been taking gabapinton for 15 yrs.? I would like it if you would keep me posted on your condition if you want. Take care....

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    • Posted

      Hi Marilyn, thank you so much for your prayers, they are much appreciated! Surgery would be risky for me too, due to the polio I had as a baby, but to be honest I think I may take that risk if it means I'll be free of this pain. My quality of life is at rock bottom at the moment, and it's only my wonderful partner, and family that keep me going. I love talking to my youngest grandson on the phone, but at the moment he can't understand what I'm saying because the TN makes talking so difficult. I shall keep you posted on how things develop Marilyn. 

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    • Posted

      I saw the neurologist on Friday last(16/6/2016) and he was very good and seemed to have a good knowledge of TN. I am being referred for an MRI scan, which is what I expected, and he has referred me to pain specialists whilst we get a handle on the situation. I now await more appointments! I just hope I don't have to wait too long as the pain is through the roof right now!

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