Gabapentin effectiveness

leejcaroll · 05-22-2008, 09:56 PM

Quote:

Originally Posted by Rum River

I'm brand new here.

I was originally diagnosed with TN by a TMJ specialist my dentist referred me to when I saw him for what I thought was tooth pain.

My dentist correctly realized I had no tooth issues, but suspected TMJ. The TMJ specialist recognized TN from the journal I provided detailing my symptoms over a 4-5 week period. He suggested I see a neurologist, so I went to the same one who had diagnosed my Charcot-Marie-Tooth fifteen years ago.

My neurologist confirmed the TN diagnosis, and I've been on Gabapentin since mid-April. I started out slow at 300mg daily, and plateaued at 900mg daily. The side effects weren't bad, and I got significant relief.

In the last week though, the symptoms have returned, and I've gone up to 1800mg daily. (The max my prescription allows.) The gabapentin doesn't seem to offer any relief, and the side effects are more noticeable.

What is the experience of others here? How often do your symptoms ease when taking 1800mg Gabapentin? Have your doctors said why the medication doesn't seem as effective?

Another thing, how fast does TN manifest itself? My first twinge of "tooth pain" was in late February. Here it's only May and I can't remember the last good night's sleep I had.

Sorry if I've repeated what is common knowledge to the rest of you, but I figure I have to start somewhere.

I have been on 3200/day for years. I rarely have breakthorugh twinges (of what we think are from anaesthesia dolorosa (painful numbness left from sa rhizolysis procedure,) When I get them I add an extra half or whole pill and that usually will take care of it for me.
leej

Rum River · 05-25-2008, 11:52 PM

Quote:

Originally Posted by leejcaroll

I have been on 3200/day for years. I rarely have breakthorugh twinges (of what we think are from anaesthesia dolorosa (painful numbness left from sa rhizolysis procedure,) When I get them I add an extra half or whole pill and that usually will take care of it for me.
leej

I had an MRI on Friday, with the results being sent to my Doc at Mayo. Once he receives and reviews the results, I plan on taking the medication discussion to the next level. The last week or two I've been twice blessed, dealing with the TGN as well as another arthritis attack in my twice-rebuilt right ankle. Prednisone for the arthritis and the Gabapentin managed to get me through for now, but it HAS been interesting.

Rum River · 06-04-2008, 12:17 PM

Well, got the results of the MRI. Nothing earth shaking or out of the ordinary. Spoke with my Doc regarding my dosage, he wants to keep it at 1800mg daily. Some days my side effects aren't bad, other days they can be a problem. (Yesterday I had to leave work early and finish the day from home. A couple of times I "came to" with the mouse still in my hand. In one episode I had been sitting like that for 30 minutes.) Oh well, time will tell.

Corkybird · 06-04-2008, 08:02 PM

I've been on gabapentin for almost 10 yrs. When I was first diagnosed with my TN back then...I was on 3600mg/ day in addition to 2000mg/ day of Vicodin. Talk about feeling spaced-out!!!!

Was still having some breakthru attacks until neuro came up with the right "cocktail" and took me off the vicodin and added Elavil. Yes, it's known as an anti-depressant...but within 48 hrs I was totally pain free. Over the course of the next month or so, I gradually decreased the gab. until I was at a level that would just control the pain, nothing more..nothing less. I've been on 1200mg/day of the gab. for about 5 yrs now, and only needed the Elavil for about a yr.
My TN is the atypical type, the lower level constant pain..very few of the lightning shooting pains.

Marilyn

EE03 · 06-05-2008, 05:23 PM

Quote:

Originally Posted by Rum River

Well, got the results of the MRI. Nothing earth shaking or out of the ordinary. Spoke with my Doc regarding my dosage, he wants to keep it at 1800mg daily. Some days my side effects aren't bad, other days they can be a problem. (Yesterday I had to leave work early and finish the day from home. A couple of times I "came to" with the mouse still in my hand. In one episode I had been sitting like that for 30 minutes.) Oh well, time will tell.

I've often wondered how many times I may have spaced out like that. It happened to me once in the middle of the road. I saw someone I had seen at work for the last five years and for the life of me, I couldn't place them. When I came to, a car was stopped and the driver had a puzzled look on his face. Scared the *@^#%@% out of me.

Rum River · 07-02-2008, 12:24 PM

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.............

Firemedic · 07-02-2008, 09:10 PM

Quote:

Originally Posted by Rum River

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!

Rum River · 07-03-2008, 09:47 AM

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!

Firemedic · 07-03-2008, 04:32 PM

Quote:

Originally Posted by Rum River

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.

Rum River · 07-06-2008, 11:48 AM

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

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