Trigeminal Neuralgia

Brain and nerves
1

Having been diagnosed over 2 years ago I have been taking Tegretol (Carbamazapine) regularly.  Condition has not improved, but I got loads of information from the TN Association conference last week.  Anyone diagnosed or experiencing similar TN pain should contact the TNA.

2

Hi - I also suffer wih TN.  I was diagnosed in 2006.  The TN Association you mentioned, is this Association in the US.  I live in Canada and would be grateful if you supply me with more info on how to get in contact with this Association.  Thank you very much.

 

3

Hi there, Have you any good tips that you can share?  Thanks

4

Is there anyone in or around the Manchester area or Any were in England who sufferers with  Trigeminal Neuralgia  and has been having treatment for this awful condition ..

 

5

Hi Irene - I am not from England but I have been suffering with this disease since 2006.  I would be glad to answer any questions you may have.

 

6

Hi Angela - I can't remember if I had contacted you about your post.  I was diagnosed with TN in 2006 and had MVD surgery in 2009.  I am not familiar with the TNA - could you give me some contact info?  I truly would appreciate it.  Also, surgery was unsuccessful so suffer on a daily basis with this disease.  Also, what med in Carbamazapine - is it anti-seizure or a pain med.  This med is new to me.  Thanky you.

7

Hi,irene13378,I'm in north wales ,but used to live in manchester.My daughter has suffered for a few years with TN.I think it began as as an exposure to herpes zoster(chickenpox).She was hospitalised.There ,they gave her antiviral meds for a week-10days ,and carbemazepine( trade name Tegretol ,here in UK).She improved immediately.They also gave her gabapentin and amitriptyline on discharge from hospital.The most useful thing was being referred to a Neurologist at The Walton Centre in Aintree,Liverpool.There, they can offer other treatments,after MRI's .We have not gone down this path-but if the meds begin to fail,then i might consider cyberknife treatment ,as being the least invasive of all.Do your homework.Research these options for yourself,as what suits one person doesn't work for another.Whatever you decide to do,this is a useful place to come,if only to know that you're not alone.X