Trigeminal neuralgia

Posted , 5 users are following.

Hi all. I have recently been diagnosed with TN and not too sure how people have been coping with it for years. Mine started in November 2012 when I also had a Shingles infection. The Shingles cleared up nicely with no rash and only slight pain but the seering pain in my forehead and down my face was agonising. My GP (who is amazingly on my side) prescribed carbamazepine and I started to take 100mg with an increasing dose. By the time I was on 600mg my vision started to go all funny and the pain was still there. I then went up to 800mg per day and then my vision almost went completely. I was then admitted to A&E with bad side effects from the drugs and suspected TN. An MRI confirmed that there was no MS so very happy but did show compression of the trigeminal nerve on my right side. By this time I then had Shingles for the 2nd time and this time it was WITH the rash. So Shingles on my left side and then TN on the right side of my face!! I then started coming off the carbamazepine and went on to oxcarbazepine and the side effects were even worse at lower doses. I was then put on Gabapentin increasing to 900mg 3 times a day. So needless to say I am now popping so many pills I tend to forget which ones I have taken and which ones I haven't. Very confusing. I have now come off the oxcarbazepine and the carbamazepine but am still on the Gabapentin and am now on Lamotrigine with an increasing dose as my pain is so bad now. I find that talking to people is the worst as it is so embarrasing when the pain strikes and I can't even look at them. I have seen a Neurologist and a Neurosurgeon at Frenchay (Bristol) and am on the 4 month waiting list for a Microvascular Decompression surgery and am praying that there is a cancellation so that it will happen sooner.

How do others cope with this pain. I am having no pain relief and the side effects are leaving me a crying mess that can't eat anything and has to rush to the loo every 10 minutes and thats excluding the numb tongue and lips and the dry mouth...not to mention the memory loss and confusion.....Not too sure what I am hoping to get from this but just thought I would share my experience and if someone has had the same please share.

How do people cope for years with this and I have only had it for 4 months?

Thanks.

0 likes, 4 replies

Report / Delete

4 Replies

  • Posted

    Hi Michelle sounds like you definitely need the MVD quickly i had TN for 2 years I was on the same drugs which totaled to 30 pills aday which I was like a zombie I forgot every thing even my daughter DOB I've just had the MVD it ain't no picnic but it worked for me I've lost some feeling in my face which is a small price to pay hope all goes well for you remain positive as i found the more your stressed the worse the pain.
    Report / Delete Reply
  • Posted

    Hi Michelle,

    The Frenchey at Bristol is very highly regarded for mvd surgeries. I suffer from hfs and have done in depth research on this surgery. Do be assured that you are under the care of the best in the country.

    best wishes

    Report / Delete Reply
  • Posted

    Hi Michelle,

    Have had it since 2007 then age 47. Not diagnosed correctly until 2009. Since then, Carbamazepine which is the generic for Tegretol. Started at 400mg per day, then to 600, now requires 800. Are "clumbsie" physically side effects, but mentally fine. Anything is better than a TN attack. Am ok as long as I stick to the dose.

    eddie13

    Report / Delete Reply
  • Posted

    Hi Michelle. You didn't say whether you were remaining on Gabapentin and at what dosage also is it any better? 

    My history was 9 months on and 9 months remission for quite a few years. Then suddenly it stopped for 6yrs. I was on 400mg Tegretol 3 x daily and 1 Amytriptiline at night. Now my Dr has suggested coming off Tegretol and staying on Gabapentin because of bad side effects. As this is only from today I've yet to see how I will fair.

    It is difficult to know what to suggest when we don't know if you have stuck to the medication you were on or if your Dr has suggested anything else.

    Good luck and let us know how you have got on. 

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up