Gabapentin effectiveness
 

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, welcome, but of course, I'm sorry your here. I took neurontin for a brief time so I can't really offer you much guidance with doseage, etc., but I have been on a lot of different meds and I experienced breakthrough pain with all of them except trileptal and effexor xr. Sadly, with the last two, I had to go off of them due to side effects. This condition is progressive and really hard to control. It also can take a lot of experimenting to find meds that work for you. I have a mix of typical and atypical pain and its bilateral which makes life pretty rough. Did your neurologist screen you for any other causes and have you had an MRI?

ellena

welcome to neuro and like Ellena said sorry you have thisT.N.:hug:
I have tryed about all the meds that were out there with mixed results some didnt help at all or the side affects not worth it or allergic to the med.
As I understand the body after a while can become immune to the med ..meening it takes more and more of the med to help because the body adjusts to that dosage so it needs to be uped and or changed. but that isnt true for everyone many find a med and dosage that works and they find relief and controll. I am not on any meds and havent been for a few years now. I WISH THE NEURO STIM WAS APPROVED BY THE GOV AS AN OPTION and avilable to others like many of the meds out there. maybe some day soon :rolleyes:. after the kinks get worked out ;)
mine came from auto accident so I cant help with the last question either..how long before it manifests , I imagine it is different for each of us. we learn our triggers..what makes it flare up or wakes the monster. for me it is breeze and wind, temp and pressure change ,weather, cold and hot things chewing ect ect... it is diffrent for each of us.
talk with your doctor and your neuro bring up your concerns and questions.
check out the stickies at the top of this forum and the book striking back is a God send may want to get that for yourself ;).
i hope you get some sleep and find the meds that work for you. and dont forget to keep us posted and know we are here to listen or support AND lend advice when ever you need. :hug: :hug: :hug:
PEACE
BMW

EE03, my doctor did not screen me for other causes. I have not had my MRI yet, but it's in the works. (My Dr. is at Mayo, and gave me a break on costs by providing the paperwork so I can have my MRI done locally.) My family doctor is currently on vacation, when he's back I'll get the MRI scheduled.

I worked remote yesterday ( thank goodness I have an understanding boss ) and am back in the office today. So far, so good.

BMW, I'm still accumulating a list of my triggers. Food temperatures, brushing teeth, outside pressure on the side of my face ( I keep rolling over on my right side while sleeping, who needs an alarm clock?), shaving, etc.

My teeth are major triggers for me as well and I'll share what I do to try to maintain them. Sadly, if I don't take care of them, they create a lot more TN problems. For brushing teeth, I use a super soft toothbrush and I soak the brush in hot water. I also use toothpaste for sensitive teeth and rinse with Act. If my teeth are really acting up, I'll forego everything and warm up the Act and just rinse with it as its better than nothing.

Take care, Ellena

Out of curiosity, how long do one of your pain episodes or attacks last?

Mine are about 30 seconds or so. I've been up since 5:00 am and it's 7:44 am as I write this, I'm up to 23 so far today.

I know everyone's experience will be different, but is this about what other people are having?

I've never timed mine. The first two lightening bolts were very brief. The third one wasn't brief but the pain was so overwhelming and consuming that I had enough time to walk to the freezer and get a block of ice out and place it on my lower jaw and wait for the pain to subside, so this episode was at least a couple of minutes, judging by my actions. These were the first classical symptoms I experienced. Prior to these, I experienced a lot of atypical type of pain which would go on for weeks and then months at a time without a break. The atypical pain I have still goes on for extended periods of time. I may get some very short breaks from it, but they are usually a couple of hours, not days and weeks. Also, my early experiences with the condition, I wasn't diagnosed and wasn't on meds. Now I am, but daily pain is a part of my life now and has been for quite some time. The meds do dull the pain, but I experience a lot of breakthrough pain and really don't pay much attention to how long it lasts. I do experience some of the lightening bolts which occur one after another. The last cycle of those was eight in a row to my upper left K9 tooth.

Info. on T.N.
 

Hi Rum, been reading your comments. I spent 3 wks. in Mayo in Rochester Minn.I
I have run the entire spectrum of T.N. From the very first lightening strike pain to the very last option anyone could endure, the complete severing of the trigeminal nerve. This happened 10 years after I was diagnosed. During that 10 yr. period my pain was totally controlled on 100mg. of Dylantin and 30 mg.of
Elavil. I thought this was how it would be for my lifetime. The darkest days of my life were yet to come. Everyone is different and this is the worst it can be.
Gather all the research you can, ask questions and have a good neurologist in your corner. My 2 surgeries at mayo were done by Dr. Pollack. Keep me posted
and I really know what you are going through. I'm really sorry and if you want to write back, I'll be here.
Truely, Dbug7

Hi Rum River,
Sorry you had to find us under these circumstances. I also take gabapentin. I have had to titrate upwards with it as well. My doctor told me to allow a few weeks after increasing the dose, as it sometimes takes a while to set in. The side effects mellow out over time, just as they may have when you first started. I am up at 4,800mg a day. That is the maximum. I have been taking it for a year. I met my neurosurgeon for the first time last week, and even he was impressed that it was that high. So it's not for everyone. And I am having breakthrough pain.
Have you tried nortriptyline or amytriptyline yet? They are both anti-depressants, but they manage neuropathic pain pretty impressively, as far as I'm concerned. I am unfortunately maxxed out on that as well, so it's back to the Dr for something different. I am truly scared of what pain I may get during the transition.
Anyway, I check in once a week or so, so if you have any other questions, go ahead and post - I'm happy to answer.
Welcome, and I hope that you get some sort of relief soon!
Mylastnerve

HI Rum,

I too take neurontin. I am curious why your doc capped you at 1800mg
I take 3600mg a day and have for years. With most people, one drug will help for awhile, then other drugs are added to help with the breakthrough pain.
It just takes some time to find the right cocktail for you.

Hoping you find relief, Nikki

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.

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 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!!!! :eek: 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

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.

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. :D 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):eek:

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

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

Tmj
 

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.

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.

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!