Hello Folks,

Something went wrong after having sinus sugery and I am
now suffering from nocturnal trigeminal neuralgia. When I
try to sleep I get electric shock-like snaps inside my head
and I can't sleep without heavy medication. An MRI of my
brain shows a completely normal ganglion. Apparently, the
secondary trigeminal branch was damaged from CO2 laser
burns to my right inferior turbinate ... too small to be seen
on an MRI. (no facial pain common to typical TN)

The Neurontin stops the nocturnal electric snaps, but it's
destroying my mind, memory and thought process. It's
gotten so bad that I can't even carry on a conversation
without forgetting what I'm saying or unable to understand
what the other person is saying. This has started after about
two years on Neurontin.

Will I have less horrific mental effects with Tegretol?
(I only need the meds at night)

Thanks.

-Roy

It would surely seem the sugery set it off, but I was wondering if you are the first one in your family to suffer from this or is there some history in the family of this problem?

No record of this in my family. The CO2 laser that the
ENT 'doctor' used appeared to be defective as his assistant
actually had to hit it with a screwdriver to get it working.
He may have burned me with a much higher temperature
than he should have. I required 3 times the normal dose
of injected anesthetic to tolerate than CO2 burning pain.

But anyhow, I was wondering which was harder on the
mind and memory ... Neurontin or Tegretol?

Thanks.

-Roy

Neurontin and Tegretol work differently. I have the atypical type of TN for 10 yrs. When I first started with it, Tegretol did nothing for my pain, yet I've been able to keep pain under control with Neurontin for over 7 yrs.

Hi there!

I have TN, and have had on and off (what I call) sleep starts for many years. It sounds exactly like your experience.

I do it on and off and when it's on, it's a maddening experience trying to get into a deep sleep. I've tried to explain this to people and the closest explanation I could find was called "sleep starts". It DOES feel electric and scared me to death when they first started.

We share something else...my TN is due to extensive maxiallary sinus surgeries. The first one was reconstructive and necessary due to a large cyst in the right maxiallary sinus (I believe the TN began then as the pain is the same but lesser and hasn't gone away since that initial cyst that went so long the surgeon said it was the largest he'd ever removed). The second two were more clearing and reconstruction. I'm told I need another, but not happening.

When mine is acting up I usually do alright when I get past the "falling asleep" period. That can take hours though with the electric shocks.

I've used neurontin, tegratol and lyrica. I couldn't tolerate any of them due to the side affects so I stick with a mild narcotic to help the pain. Some tolerate other meds better than one, but I was unlucky there.

I wish you more than well trying it. Please let us know how it goes.

KD

Hello kimmydawn,

Mild narcotics don't kill nerve pain, so it does not sound
like you have what I have ... unless I just haven't used
the right ones.

I too had extensive sinus surgery for sinusitis, but the
nocturnal *jolts* inside my head didn't start until after
the CO2 laser turbinate reduction burns.
I've got Vicodin, Vicoprofin, and Norco, but I don't remember
them stopping the nocturnal jolts or nerve pain deep inside
my nose. It's been so long since I've used them I guess I
forget. Maybe I should try them again. I haven't had a decent
nights sleep in over 4 years. It's like a slow, torturous death.

-Roy

I am experiencing facial numbness prior to and after sinus surgery. A CAT scan at my request after surgery revealed my sunus' still clogged. Taking gabapentin but it seems I need large doses. Taking more than prescribed along with ibuprofen and tylenol. Not much relief.

nick

Wow, I have TN from a herpes outbreak on and around my mouth last year. But, I have had those electric jolts when falling asleep for much longer. I think they may have started after having 3 ECT treatments(electro-convulsive therapy) That was a horrible experience. When you get the electric jolts, do you have different parts of your body move too? I get that plus my mouth including my teeth clamp down so I always have sores on my tongue from biting it. I take neurontin and Cymbalta for the pain(Cymbalta also for my depression and neurontin for my seizures too) I also have RLS and take mirapex for that at night. I am on a lot of meds due to these problems plus having FMS/CFIDS etc. I also am on an extended release narcotic as well as a fast acting one for breakthrough pain. I have been wondering how to even explain these "electric jolts". It can be maddening, but I also take trazodone at night for sleeping, which helps a great deal. but, when trying to nap during the day it can be frustrating. I still do wake up many times during the night from these jolts and the subsequent biting of my tongue.

I have typical TN and tegretol seems to keep it under control, but only with increasing dosage over time. I'm scared what will happen when I get to the maximum dose (I'm on 800mgs per day now).

Stewart-tn

I've Been Diagnosed With Tn Also...i've Had It For Almost 2 Years...i Don't Have The Pain, Think Goodness, However, I Do Have The Tingling, And Nubmness...i'm Taking Gabapentin, A Neurontin, 1200 Mg A Day, 1 In The Morning And 1 At Night..it Does Help But Never Really Takes The Numbness Completely Away...i've Also Gained 25 Pounds....i'm Now Taking Vitamin B-complex Along With Vitamin B-12...i Know This Might Sounds Crazy, But I Think It's Helping...

Please Let Me Know If Anyone Else Is Experiencing This...

Thanks