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trigeminal neuralgia

Posted , 8 users are following.

madeleine31271
madeleine31271

hello

I have been suffering with several different symptoms thats making me feel like im loosing my mind, the whole right side of my face feels like its full of fur, it burns, my eye gets red and feels like its on fire. i can wash and shave my face and none of this matters, my doc has tried prednisone with no success and now im on topiramate 25mg, i have only been on this for a week so have not seen any improvement but with all the researche ive been doing i have not seen anything thats given me any hope. does anyone have any info they can share with me please.? I know practically nothing about this disease and the waiting list to see a neurologist is long. not sure how much more I can take. Thanks to anyone who can help.

0 likes, 17 replies

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  • karen36710
    karen36710 madeleine31271

    Posted

    Where are you located?  Canada...Ontario?  When you mentioned the waiting list to see a neurologist I thought you might be in Ontario.  I was diagnosed with TN in June this year.  I really had a rough time for the first 3 months....overdosed with meds, two drug reactions that were really bad.  I am now on a minimal amount of meds.  I still have pain but so far it is bearable....a lot better than the side effects of the meds this summer.  Have you had an MRI?  I had two...neither showed a compression and my diagnosis is atypical TN....because I was having constant pain...with similar symptoms to what you described....but I am on the list for MVD surgery...the only hope for this terrible disease.  In the past month my symptoms have changed....more typical than atypical...except I now have pain on both sides of my face!  I always had a bit on the other side of my face but now it is more constant.  I am trying to get through till May when I hope to be having my surgery.

    Tell me more about where you are etc

     

    • madeleine31271
      madeleine31271 karen36710

      Posted

      Hi Karen yes Im from Ottawa Ontario. for the last few months ive defenitely suffered with various facial symptoms that ranged from pain to burning and mostly as if i had dirt or fur on my face, i am  always rubbing my face to remove phatom hair, for the longest time i thought this was allergies, we tried eye drops for the burning eyes, prescription anti histamines, nasal sprays and even wet as far as to go for allergy shots, nothing alliveated my symptoms. i could wash my face over and over and it made absolutely no difference the symptoms just got worst. now the right side of my face feels like its being pinched and my right eye burns like fire, gets really swollen, when im tired the symptoms are increased. after i wake up im ok for the first few hours thenthe cycle of pain starts all over. my family physician is convinced this is TN, he has prescribed topomax at its lowest dose 25mg until next week but im already finding that my hands and feet are going numb and tingling. it doesnt last long so i tolerate it for now but i work in the medical lab so the last thing i need if for my hand to go numb while inserting a needle in a patients arm. I made an appt for next week with my fam doc to light a fire under his behind to ensure hes fast tracking the testing required as ive not had any as of yet.
  • Jeej
    Jeej madeleine31271

    Posted

    Hi - please ask your reg doc for gabapentin or oxcarbazipine. He/she should be able to get you started before you se neuro. Document your symptoms for the neuro appt. Good luck and hang in there
  • Jeej
    Jeej madeleine31271

    Posted

    Hi - please ask your reg doc for gabapentin or oxcarbazipine. He/she should be able to get you started before you se neuro. Document your symptoms for the neuro appt. Good luck and hang in there
  • karen36710
    karen36710 madeleine31271

    Posted

    If you start gabapentin or carbamazepine or any of the anti convulsants ....take only the dosage till the pain goes away  or till you can tolerate the pain.  My doctor did not tell me this and with his first prescription had me increase the dosage every 5 days twice till I was on triple the starting dose.  The side effects were horrible!  The drugs can help but too much of them can be just as horrible.

     

  • angiegirl
    angiegirl madeleine31271

    Posted

    Ask to see a Neurologyst and get a diagnosis from them. They will probably start you on a more regally used drug.     Do it now , don't wait to long.

  • lee12629
    lee12629 madeleine31271

    Posted

    Hi,my friend had tn for years..right combo of meds i guess,she just had gamma knife procedure as her pain eventally increased. This procedure is very non envasive,can find it on you tube. SO far after the procedure,its only ben about 10 days she is doing very well. Xx
    • lee12629
      lee12629

      Posted

      Shes in the U.S. frankly i don't know why do many suffer before trying a procedure.

    • lee12629
      lee12629

      Posted

      By the way with gamma knife there is no cutting. Its laser,very non invasive and pinpointed to th e exact nerve causing the issue.
    • alicot
      alicot lee12629

      Posted

      Yeah, same with the Radiofrequency ...they target the nerve only.

      a part of your face remains a bit numb. So you have to live with that but hey, it's a trade off.

  • marilyn49807
    marilyn49807 madeleine31271

    Posted

    I'm so sorry you are having such a horrific time. My face on right side was so horrific but doctor put me on gabipinton 300mg in morn w/ extra strength Tylenol until pain easez off.,600mg gabapinton @3, 600mg bwfore bed =1500 a day. I have been on gabapinton since 1year and 6months. I know that God has taken away so much of my pain. I tried to ease off of meds but too soon. I will try again in May next ywar. I will pray for you. I think surgery is too risky and doesn't take care of problem. Pray and ask God to help you and He will. I pray He touches your face right now and takes away your suffering. In Jesus name. Amen...

    • madeleine31271
      madeleine31271 marilyn49807

      Posted

      I've been told that it's extremely difficult to find the effected nerve and effected blood blood vessel in order to do mvd. Maybe I've been misinformed.or maybe eacc case is different. Being in the medical field myself I understand that the brain is the most complex organ in th human body

  • alicot
    alicot madeleine31271

    Posted

    Dear Madeleine,

    You have every right to feel horrible about this. If in fact it IS TN, find a neurological surgeon immediately and have a procedure done. There are several to choose from. I had Radiofrequency surgery and it got rid of the pain immediately for a number of years. Sadly it does come back BUT with a supportive team/doc they will get you in immediately and zap that nerve again. Radiofrequency can be done over and over. It is minimally invasive and I am up and functional right away.

    The neurologist will put you on a drug that many find to be unacceptable...makes them zombielike. Some are OK with the drug so?? And there are several drug choices. Absolutely do the on line research so you have an idea of what your options are. I was lucky to find an experienced neuro surgeon who has done lots and lots of these surgeries.  An experienced doc makes a huge difference.  I found him by doing research on line.  

    Some neurologists are really good about TN pain and some are not but they CAN prescribe an anti-seizure drug that can ease the pain until you get a surgeon (unless, of course, you are OK with the drug.)

    I am so sorry you are suffering. Believe me, everyone here understands! The people who have had successful surgeries tend to leave this forum but there are many successes. I am one of them.

    • lee12629
      lee12629 alicot

      Posted

      Thats why my friend had the gamma knife,meds worked for years,but eventually they had to be increased to the point she couldnt function properly and still had pain.
    • madeleine31271
      madeleine31271 alicot

      Posted

      Thank you, I will do my home work and look at all of the many advices I've read in the forum, you have no idea how much this has helped me, this is a scary time for me and hearing some positive responses has helped, before this everything I've read was negative so my imagination got the best of me. sad

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