[pono]

ON =Occipital neuralgia-has been one of my big issues but now appears TN back. Return of those pains in face--the intense zaps, stabbing --along w/ burning and other Neuro SX-- is rather depressing . Whole head feels under attack. actually whole body .
many Neuro problems --some w/ specific DX (like ON, cervical dystonia, PCS ) trace back to trauma (accidents, head injuries, etc)
and others w/out definitive DX--SX that mainly mimic MS. what my neuro calls immune mediated polyneuropathy.
multiple , overlapping or concurring conditions - challenge .

New, or returned challenge seems to be TN. or is it another condition?? or does it really matter....
by whatever name/DX --for me problem is PAIN --esp that now occuring in head/neck/face. {for me this area & types of pains hardest to deal with


what to do???

I"ve tried many meds (AED's, antidepressants, RX & OTC pain releivers, etc) for the other "nerve' Pains w/out success. most recent was trileptal.
Injections , blocks, more....varied duration & relief.
Botox was most promising (DX: cervical dystonia got approval --intent was to use for all head pains inc. migraines) but for some reason insurance now denys-- I've been pursuing - for the 'other head pains' -

wondering if anyone has had Botox for TN ??

or if anyone has suggestions, advice/info -experience dealing w/ these pains- multiple neuralgias- affecting head--areas near brain

thanks
wish ALL the Best

[Nik-key]

HI Pono,

I am so sorry to hear about all your pain I have never tried botox so I can't help you with that, sorry. I too and bilateral TN ON and anesthesia dolorosa from the surgeries. Have you been to a pain clinic?
There sole purpose is to try to help you relieve, and deal with the pain.
Nothing takes away my pain, but I have learned to cope.

For me, it has been a long journey.. but the most important thing I have done for myself is to accept my pain, and focus on quality of life. Now, that doesn't mean I am not always looking for that miracle

I hope you find the right drug cocktail that helps releive some of your pain.
Nikki

[pono]

Nikki....
thanks so much for reply
I'm sorry to hear of your conditions and that nothing takes away the pain.

it's been long journey for me too.

Quality of Life is focus--but for me often needs "tweeking" -revision as to what that means, or 'is'
at times I have been able to accept & cope [better] but recently so many things- pains, problems -hitting hard.
these head/face pains another complication, challenge

i've been to many DRs, pain clinics but have not found any who "understand" , know how or willing to treat my 'complex' conditions or offered options my neuro has, like Botox.
but I'm still looking.

and also praying for that "miracle"....

wish ALL the Best

[Burntmarshmallow]

I am sorry for the many diffrent types of pain you are having!
I cant help much with botox or any suggestions. I can say what has helped me most and given me back some quilty of life is my Neuro stimulator.
It is last resort after meds and surgeries dont help and still not yet approved by the gov. as far as I know.
I can send a hug and low pain wishes and wish I could help you more .
If you ever want to talk or vent we are all here for you Pono.
PEACE
BMW

p.s. dont give up keep searching and praying for that miracle!!!!!!

[pono]

Originally Posted by Burntmarshmallow

I am sorry for the many diffrent types of pain you are having!
I cant help much with botox or any suggestions. I can say what has helped me most and given me back some quilty of life is my Neuro stimulator.
It is last resort after meds and surgeries dont help and still not yet approved by the gov. as far as I know.
I can send a hug and low pain wishes and wish I could help you more .
If you ever want to talk or vent we are all here for you Pono.
PEACE
BMW

p.s. dont give up keep searching and praying for that miracle!!!!!!

much thanks ...

would you share more about Neuro Stimulator??

[Burntmarshmallow]

I have a neuro stimulator. I got a trail before I decided I would have it for good. I had it for a week. Then the surgery was Simple Simon. Same day went in morning was awake threw most of it. They put the battery under skin under my left arm by bra line. Then they ran wires across my back to neck then the leads back of head and lower right side of jaw. I will need to get new battery in a few years. My type of battery good 7-10 years it is like a pace maker battery. I went home that afternoon. Waited like a week I think maybe a few more days then that. To heal some and stuff. Then I went and had it turned on. There is a link in the helpful websites I put at top of forum here all about neuro stimulators. I don’t have motor cortex or deep brain stimulator. I would say mine is very much like a spinal cord stimulator but it is not exactly a spine cords stim as it isnt for spine.

Sorry dont feel well and not much into posting but wanted to get a bit of info to you before i go chill more. Post back any questons and I will get back to them soon.
I feel yulk sorry Pono.
Hugs and;OW pain at you.
Peace
bmw