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Old 07-06-2008, 08:08 PM #21
Firemedic Firemedic is offline
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Originally Posted by Rum River View Post
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
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Old 07-14-2008, 02:10 PM #22
Rum River Rum River is offline
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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
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Old 08-18-2008, 12:57 PM #23
Rum River Rum River is offline
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Okay, it's been awhile, but I have an update.

It's gotten to the point my meds are causing more side effects then I want to deal with. My wife has to drive me to work. My employer realizes my productivity is down, but is willing to put up with it for now until I get something figured out. I can't speak long sentences without slurring my speech. Hand dexterity is way off, as are my memory and thought processes.

All this and I'm still having breakthrough pain.

I am scheduled for surgery at Mayo Minnesota on Thursday. They are going to perform a right retromastoid suboccipital craniectomy and then a microvascular decompression of the trigeminal nerve root. My neurosurgeon, Dr. Piepgras, is 80% certain a loop of artery is causing the problem, and that this procedure is the resolution.

Ever onward.............
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Old 10-21-2008, 04:04 PM #24
beenthere beenthere is offline
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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.
Hi I'm new here too. I had TMJ after my dentist pulled or actually had to break all 4 of my wisdom teeth to get them out. They were causing terrible headaches, eye problems etc. Anyway, the TMJ went on for weeks I thought it was just part of the healing process because my cheeks and chin were bruised badly and I had numbing in my lips and nose...the nerves run very close to the root of my teeth. Anyway I finally, after taking tons of pain meds went to a chiropractor who showed me how to align my jaw back using pressure points next to your jaw bone. I started doing it at home and after a few months I was back to normal and have not had any great problems since. If my jaw clicks while I'm eating I just do the pressure points and it puts things back into alignment and I'm okay...sometimes I think it has a lot to do with my sinises, seasonal allergies or even a cold. I hope this help you.
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Old 10-29-2008, 11:23 PM #25
Mikesimone Mikesimone is offline
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Default Trying to get a diagnosis

My symptoms started about 10 days ago and consist of right jaw pain that is present 24 hours/day. I might sleep for 3 or 4 hours and then I wake up with the pain. The pain is dull and deep and is about a 6 or 7 on a 10 point scale. The triggers are talking or swallowing and if I do those I will have an increase in pain for a few hours or more. They can't get me in for an MRI for 3 weeks. My symptoms don't seem to be that of classic TN but possibly more closely related to the atypical TN.

Does anyone have any thoughts? I can't see how people live with pain like this. Thanks.
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Old 10-30-2008, 03:21 PM #26
EE03 EE03 is offline
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Welcome to the forum, although sorry you need to be here. I have a mix of classic and atypical TN involving all three branches and both sides. I have a lot of triggers, but I also get a lot of spontaneous pain which occurs without being triggered. The duller, boring pains go on for extended periods of time with me, where as the classic lightening bolts are episodic and short lived. Some doctors opine that there is a pre-TN period which consists of pain similar to what you describe, and believe that it progresses to the lightening bolt/classic TN type of pain pattern. You've mentioned that you're waiting for an MRI, but have you seen a neurologist and have you been diagnosed? Part of the diagnostic process involves trying patients on an anticonvulsant and seeing if it stops the pain, as TN pain doesn't respond to typical pain killers. I had this condition for a long time before I was properly diagnosed. Prior to treating with meds, I didn't get a lot of sleep. Every time I tried to lie down, the pain would get stronger. This condition has turned my life upside down and living with it isn't easy. Hopefully others will respond and if you have some specific questions, post them. Also, check out the TNA website. There is a lot of good information there. Take care!
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