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not brave

I read your posts and see how brave you all are but I really don’t think that I am. I feel some what hopeless I recently developed Trigeminal neuralgia. The pain is like no other up to 50 excruciating bolts of lightning in my face Which results in my being unable to talk eat or drink without excruciating pain. I have spoken to the MS nurse and she is trying to get me an urgent appointment with the neurologist However reading about Trigeminal neuralgia in relation to MS unlike regular TN which when the medication fails to work its possible to have surgery. This isn’t possible with MS as the most likely cause is a plaque and unlike most other lesions it tends not to improve. I have some relief now from Gabapentin I tried carbamazepine but unfortunately It effected my sodium levels. Apparently as time goes on the medication becomes less effective. I Know that I can not live with that pain. if it returns and the medication ceases to be effective I feel that I would absolutely and most definitely choose to end my own life as a pain that severe means for me there is no life The pain is so utterly excruciating and the information so negative I plan to get on with my life now as best I can but I feel in the back of my mind this will probably be my last Christmas

1 Like

I’m so sorry, Mully. Hopefully the neuro can see you soon and find something to ease your pain. It’s also possible that the TN will go away on its own soon. It took bravery to come on here and open up, so hang in there!

@mully, I’m so sorry the TN has left you feeling so low and considering the ultimate. I don’t have TN, but do have unrelenting nerve pain where sometimes I don’t know what to do with myself, and would consider literally anything to get relief.

Pregabalin or Amitriptyline are also prescribed off label for pain related to MS, have you tried either of these as an alternative to Gabapentin? I’ve tried all 3 and as you say, sometimes the effectiveness is diminshed when you’ve been taking them for a while. I’ve found the best way is to switch between them. Sometimes when you’ve been taking something else and then go back to Gabapentin, it feels effective again. Please do speak to your GP about this, and also about how you’ve been feeling.

Keep posting here if it helps, or if you need someone to talk to, call the MS helpline or Samaritans on 116123

Take care
Willowtree x

Dear Mully, I’m so sorry to hear how badly TN is affecting you.
I wonder if a high dose of amitriptyline would help?
Keep pushing for that neuro appointment.
Sending lots of love
Boudsxx

T N i s h * l l.

I b e g g e d m y d e n t i s t t o r e m o v e t h e 2 t e e t h.

A l t e r n a t i n g w a r m a n d c o o l o n a r e a (q u i c k l y a n d s a f e l y) m a y h e l p ?

I h o p e y o u f i n d a w a y t h a t h e l p s s o o n.

E l

I expect you are well aware of treatment options, but TN was covered recently in Prof G’s newsletter and generated quite a few comments.
Needless to say, I hope you are getting the help you obviously need.

It was the worst pain I have ever had - by Gavin Giovannoni - Prof G’s MS-Selfie Newsletter (substack.com)

Oh Mully

I had TM a while ago but only for few days on and off so was bearable.
Can’t imagine what you’re having to deal with.
Hope you get an appointment with your neuro asap.

Sending you a huge hug, but not one that hurts,
Jen

Terrible pain with TN - I take gabapentin (low dose) and thankfully it has stayed away but as you say, at it’s worst, I wanted to rip all my teeth out