TN

I found mild let up of pain with a hot compress on my face and back of my neck where the nerve originates. I am currently on two meds the most say only on makes them a zombie. I take two. Have been for a year and a half while trying to get an appt with a surgeon. I recommend going for surgery as soon as possible. I wish you luck and we are always here.

Hi Tonii,

Sorry you are going through this. I just sent you a private message

Hi Tonii, first off all I'm sorry to hear about the pain you have been suffering. I fully empathise with you as it was only a year or so ago that I was at the height of my own TN suffering. And I had it bad!!

The reason I'm posting is because I was surprised to read the first drug that you have been prescribed to help you with the pain. I've was tried on numerous drugs to help control the pain - some that worked and others not so much.

My consultant at the time is highly regarded as the TN specialist in my region and he immediately put me on a drug called carbamazepine and this is usually the first line of treatment to help with TN. So was a bit surprised you weren't put on that to begin with.

Was this ever mentioned to you? I eventually had to stop taking it as it brought me out in a rash but what I remember of the drug was it's almost immediate effectiveness, in blocking the pain. I was on a very high dose mind you, and it does leave you feeling spaced out and not really with it.. But the pain was gone for the time being.

They found an underlying cause for my TN since.. Which I've posted about in some other threads.. And so they treated that with an operation which seems to have really helped (ETV if you want to read up in it - to treat the hydrocephalus I had)! Despite now having mild tinnitus.. I'd settle for tinnitus over TN any day!

Have you had an MRI scan yet?

Amitriptyline is actually a first line drug used for Type 2 or Atypical TN. Carbamazepine (or Tegretol) is a first line drug used Type 1 or Classic TN but it probably has the strongest side effects. It does start to work pretty much immediately though, which is very good if you are in a lot of pain. Amitriptyline has to be built up slowly and takes more time to start working.

I was diagnosed with Type 2 or Atypical TN over 10 years ago and Amitriptyline is the only drug I have ever used. I have had to adjust dosages up and down depending on my amount of pain. I did use Carbamazepine for two days but it made me feel so nauseous I had to stop taking it.

There are about 5-6 surgeries, mild ones, for this pain, get one! Find the TN surgeon in your area and go! I was but on neurontin which worked for obe month, then oxcarbazepine which blocked the pain but I couldn't function. The neurologist I was seeing wanted me to stay on drugs and wouldn't help so I found the TN surgeon for my area, got radio frequency thermal surgery and have been out of pain ever since. The tradeoff was having a numb spot on my face where the nerve was burnt and my face had to go through some changes BUT it was over quickly, I withdrew from the drugs, got my life back and no more.TN pain, at least til the nerve grows back, if it grows back.

Research it under trigeminal neuralgia surgery and find the docs who do this, go talk to them and end the suffering!

Best of luck!

Thankyou. I forgot to say that she did mention type 2. I'm hoping my GP will be more helpful and arrange for the MRI.

Hopefully I am able to find something that helps. I have an 18 month old little girl and want to be able to move relatively pain free.

Thankyou for your replies

X

I know what you are going through, Tonii. I have a five year old girl and have been dealing with this for awhile. It is so hard to be in pain when you have a little one that requires constant attention.

Hi! Toni,

I am just so shocked that so many young people are suffering with this terrible condition. I am in my 60s and I thought this was an affliction that primarily affected older women.

Whatever does trigger it off, no one seems to know. I am 8 weeks down the line after having my operation when they injected glycerol into my Trigeminal nerve. It has definitely got rid of the TN pain - I can walk in the wind now and have no terrible pain that that causes. However I have almost continuous pain at the right side of my temple and my face, mouth, teeth and tongue are still numb. They have told me this could go on for weeks or months, and of course the glycerol route is a temporary fix. I am still on Oxcarbamezapine and lamotrigine which is being increased.

I cannot sleep on my right side however do when I am asleep, as this is my preferred side for sleep, and then the pain wakes me and I find it difficult to get back to sleep. I really feel for all out there with this affliction and trust that more research is done so that we can all get a remedy and get on with our lives.

Shaz

Thanks Shaz, I, too, am in my 60s and thought this was an old lady thing. I had the radio frequency thermal surgery where they burn the nerve. I, too, am not having TN pain at least for now. I, too, was on oxcarbazepine which worked well except I could not function at all. I am so glad to be off the drugs! I hope you feel better soon! I had problems for about 4 + months after the surgery but no TN pain. Now, just numb along the burned nerve and occasionally itchy but I don't care because TN pain is gone.

Best of luck in recovering from your procedure.

Alice