Back again, still struggling a bit.

Currently am not able to chew, PERIOD. Only liquid or everything mashed.

Have to be careful in the shower, no direct streams of water on the right side of my scalp or on the right side of my face.

Have shaved my beard for the first time in 15 years, checking to see if shaving is less painful than shampooing.

The doc has bumped my Gabapentin to 3000mg, this is the second day and there's no improvement. I'm scheduled to try for a total of three before getting back to him with the results.

We're camping over the 4th, but I won't be able to eat burgers from the campfire, THAT's for sure.

Nuts.............

Hi Rum River,
Sorry you're having such a rough time. Been there. I am new to the site. I have TN for five years from a firefighting injury. I also needed 12 surgeries to fix my jaw and teeth. Between the TN and the surgeries, I ate WAY too much mashed/liquid food. For awhile, I was so sick of mashed potatoes, I was like a really bratty baby. Hand me baby food, and I would throw it at the wall. It was pretty.

Have the docs talked about mixing in any other meds? I am on Topamax and it helps. It has some weird side effects. Most days, I can't spell my name, but it does help with the pain. If anyone asks how I spell my name, I just hand them my driver's license and figure that there's spellcheck for everything else. Sure, my IQ's dropped a good 15 points, but at least I've learned to laugh about it. I just don't play scrabble with friends anymore. They always win. The word "cat" only gets so many points.

Hang in there. My prayers are with. Try to have a good holiday. Hopefully, you'll have a nice big, juicy cheeseburger soon!

Okay, just spoke with my Dr. at Mayo.

The next step is to try 200mg Tegretol (Carbamazepine) in addition to the 3000mg Gapapentin (Neurontin).

Additional lethargic side effects, here I come!

Tegretol is the classic drug for TN. It helps the majority of sufferers from it. I tried it, but it made me too tired. I do respond strongly to meds though, so I am not a good one to go by! Many patients do just fine with it for treatment of TN and seizures. Good luck! Hope it works. I have my fingers crossed for you. Just be positive going in.....if you plan on the side effects, you will have them! The mind is a powerful thing! I have treated many patients on these meds (I am a paramedic) and I always ask them how the meds make them feel (in a professional way, of course, as part of their "history". Very easy to ask, "Do you have any noticeable side effects from your meds?" Always looking for first hand info! My doctor and I normally share what I discover.... Just anecdotal info for him, but this stuff is always interesting in medicine.) Most of the patients say that they get used to it and learn to deal with it.

OK, right now I'm taking 1200mg Gabapentin and 200mg Tegretol between 5:00 & 6:00 am. At noon I take 600mg Gabapentin and 100mg Tegretol. I repeat the latter between 5:00 & 6:00 pm, and between 10:00 & 11:00 pm I take 600mg Gabapentin.

Thank goodness, I can finally brush my teeth and chew my food. Still some discomfort, but overall things are much better.

Side effects have increased, but so far I'm dealing with it. (Nice to have the holiday weekend to test things.)

Going to work as usual tomorow, we'll see how that goes. I have to schedule some blood work with my family doctor too.

Dan

Hey Dan,
Glad to know you're feeling better. Chewing is such a luxury that people take for such granted!!!!! LOL Sometimes the side effects will go away. Topamax causing numbness and tingling in the hands, but it has decreased a lot in me. So, you do get used to the side effects a lot.

Good luck at work tomorrow.

Berni

Things seem to have stabilized somewhat. Using 3000mg Gabapentin and 400mg Tegretol daily.

Am able to chew, but really have to watch exactly what I'm trying to chew. Too tough or too crunchy does not work at all. Brushing teeth is tolerable, but that's all. If possible, I try and schedule meals and tooth brushing around that time of day when the meds are at their most effective.

My Doc at Mayo is setting up an appointment with another Doc to discuss what surgery might be appropriate.

The side effects at this point are:

sudden periods of sleepiness (do tend to make those long-distance trips in the car exciting)

sudden loss of control in the hands or feet

some difficulty in speech

weight gain (I've put on 10 pounds in the last two weeks)

Time will tell, I'll have to see what this second Dr. at Mayo has to say.




Dan