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.
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 . 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.
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.

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