[Doodle bug7]

Six years ago, as a very last option, the neurology team at Mayo clinic severed my trigeminal nerve. The electric shocks that ran through my face stopped only to be replaced by Anesthesia Delorosa, a different kind of pain. A.D. is not a scary pain as T.N. but it has pain in it's own right. There is no surgery or medication to correct it and so you are left with trying to decide which meds at least take the edge off. When things get rough, I reach for an ice pack to get it settled down. I have fallen asleep many times with the icepack on my face.
The last two evenings have been unsettling for me as I began having some of those lightening like pains. I keep thinking that the trigeminal nerve has repaired itself and is coming to reek havoc in my life. Has anyone ever heard of anything like this? I am sitting on needles and pins as
I think back how devestating those pains were. Can this be happening again, but how? Thank you for any help you might have for me, Doodle bug7

[Burntmarshmallow]

Doddle I think that the nerves are always trying to regenerate and re grow
but I am not a doctor or anything. The nerves may not "re-grow" but the may be trying to and that may be what is causing the t.n. pain
I have no idea how or why just think that nerves even tho they may be severed or damaged... nerves are always trying to re generate .
I hope you are able to get rid of the new pain. a.d. is enough !!
Sending my prayers and healing thoughts to you .

PEACE
BMW

[Doodle bug7]

Thank you for the support, B.M.
I am totally devastated over this. I know my A.D. pain and I do my best to deal with it. I was blind sighted by this new (yet old) pain of the electric shock business. It brings with it the uncertain, horrible feelings that I was fighting before my last surgery to sever the T.N. nerve.
I ask myself and my husband "what am I going to do?" I can't live like this, scared to death to even talk, eat, move.
The memory of what it used to be like is flooding my mind.
I know it is very hard for others to understand about the shocks that occur in your tongue , jaw, and ear. It can
paralise you with fear. It's like I am being held captive on an island full of snakes.
The Dr. upped my neurontin but so far there is no med's
that will touch it. I'm a wreck...
All the best, Doodle bug7

[Random]

Originally Posted by Doodle bug7

Thank you for the support, B.M.
I am totally devastated over this. I know my A.D. pain and I do my best to deal with it. I was blind sighted by this new (yet old) pain of the electric shock business. It brings with it the uncertain, horrible feelings that I was fighting before my last surgery to sever the T.N. nerve.
I ask myself and my husband "what am I going to do?" I can't live like this, scared to death to even talk, eat, move.
The memory of what it used to be like is flooding my mind.
I know it is very hard for others to understand about the shocks that occur in your tongue , jaw, and ear. It can
paralise you with fear. It's like I am being held captive on an island full of snakes.
The Dr. upped my neurontin but so far there is no med's
that will touch it. I'm a wreck...
All the best, Doodle bug7

Have you tried a benzo yet? Ativan, Xanax, Klonopin, Valium. Any of the first three at 1mg or Valium at 10mg. Should help a ton.

[Doodle bug7]

Thanks...no, I haven't tried those.
D bug7

[mean laureen]

Doodle Bug,
I am so sorry to hear that you are having your electric shock pains back. It's bad enough that you have to deal with the a.d. that you experience. You're right, it does make you feel like you're afraid to eat, talk, move, etc. That is how I felt last June when I was going through all of that. I felt like a prisoner just laying in my bed afraid to move. I hope someone can help you, and soon. It scares me to think that mine can come back any time it wants to also. Take care and keep us informed.
Laureen

[EE03]

I'm so sorry that you're dealing with this again along with AD. Have you made an appointment with any of your docs to run this by them? I hope that one of them would have some insight into what your dealing with. Take care and keep us posted. ((((((hugs)))))) to you

[Doodle bug7]

Yesterday was a rough day for me as I had over 10 jolts.
This shakes me up so much cause I remember what I went through before my last surgery, the jolts like lightening bolts shooting from my ear to my mouth. The pain you feel is the worst pain known to man. Please believe that! It was six yrs. ago when they cut my trigeminal nerve.
Even having A.D. for six years, nothing like this has surfaced. It's like saying to me "its not over until I say it's over".
Truely a believer, Dbug7

[Koala77]

Dbug7, have you tried any of the anti-epileptic medications like Tegretol?

I take Epilum (which is in the same family) for nerve pain, with moderate-good relief. Some people get excellent results so if you've not tried them, maybe you could mention them to your doctor. It couldn't hurt anyway.

[Omariffic]

Or Trileptal. Anti seizure.

Originally Posted by Koala77

Dbug7, have you tried any of the anti-epileptic medications like Tegretol?

I take Epilum (which is in the same family) for nerve pain, with moderate-good relief. Some people get excellent results so if you've not tried them, maybe you could mention them to your doctor. It couldn't hurt anyway.