Trigeminal neuralga and topamax

I have TMD problems and have also been told I have TN. It seems that TMD can cause this neuralgia.

can you tell us your TMJ story? How long have you had it? What have you tried? What is your pain like?

I'm curious to figure out what causes the neuralgia pain? Is it joint inflmation? Disc damage? Disc displacement?

Hi...thank you for your reply...my problem with tmj began after I had a wisdom tooth extracted in 2007....at the age of 33....I ended up with a perforated sinus and this horrible jaw pain..I went back to see the oral surgeon who did the extraction and he wanted me to get fitted for a night guard....well I did not follow his suggestion because the only thing ive heard about tmj is grinding and a little soreness ....well I was sure there was no way this was tmj ...I hurt too bad...I have seen oral surgeons...ents and neurologist whom all seem to have a different idea about what is going on...iit seems that tmj can put you in a world of hurt...what started out as jaw pain has now spread to my ears ...eyes... neck ...base of my head...I am just miserable...did I mention the pressure in my head.....1 year ago started the neuralga..which always starts with a muscle spasm on my right side...shoots into my nose which burns and then like a stab in my forehead.....I have been looking for a link between the tmj and neuralga as well...I feel it just has to be related....I an taking neurontin for the neuralga...which helped me with both tmj pain and neuralga in the beginning...the only thing i have found that helps me is warm moist heat and pain meds....I will be seeing a neuromuscular dentist this Friday....I can only pray that this will be the answer....I have noticed when the jaw pain is at its worst...the neuralga is worse...

The ear nose and throat dr. Did say he thought the right side of my jaw is popping out more...maybe trauma...dislocation....I will know for sure after my appointment.

I think there is definately a connection. Too many people have both and the symptoms are too similar.

I've been in a NM splint for 2 months and haven't gotten much relief yet. The pain is a constant all day with spikes over it and the spikes haven't been as bad, so some progress i guess. The pain is brutal, tightness, and pain up behind the eye. Neck and fingers too. Talking to people on the boards it seems 6+ months is a minimum to get over it. For some its over a year.

My neurologist wants me to try Trileptal (another anti-epileptic one similar to neurontin) but have been holding off. May have to try if I don't get more relief soon. How were the side affects for you on neurontin?

I can't believe they haven't figured out the connection yet. Joint inflamation, disc inflamation, disc displacement. Something has to be the cause that sends the nerves going nuts.

I saw some of your other post and were curious about your splint...I'm sorry to hear that you have not gotten any relief with it...did your NM dentist say anything to you about any link between Tn and Tmj? I find it strange that I have had so many problems with my jaw for so long and now the same muscle that kills me with the tmj is the same muscle that spasm right before that bolt of lightning hits my face....how could it not be related....the neuralga started as my tmj worsened...meaning as soon as the the neck issues and headaches and jaw became worse the neuralga started....I feel as though not having my jaw treated in time may have caused the neuralga to set in...The neuron tin was a blessing from the first day I took it....and the sleep is amazing...I can not lie on either side of my face which made sleeping impossible....but I believe after only 5 months on it....I have built a tolerance to it....still helps a lot a night....but not during the day....I'm at my worse in the late afternoon....strange but right around 3 ....maybe that's when the meds ware off....I do not usually do well with medications...tend to get ill....i did not get sick with the .....it just makes you really sleepy...I have heard that a artery can press on the nerve causing this pain...seems as though if you have inflamation or dislocation....could that cause the artery to press on the nerve? Did your neuralga start with the tmd or after? Do you notice your tmd and neuralga are worse with the weather? I have been finding triggers with mine like the weather...that time of the month...everything that affects my jaw affects my neuralga.

Is your splint uncomfortable? Can you talk ok with it? Do you wear it all day?

The splint is not a bid deal. Mine is 24/7, even eating with it. You'll learn how to talk with it in a week and eat with it in a few days. After 2-3 weeks I forgot its in there and have no lisp.

My 'neuralgia' is mostly muscular and is a very constant pain. It seems to go away when I sleep but then come back shortly after I wake up. Its mostly muscular that brings this tightness and pain from above the ear, to under the eye and a bit down the face towards the lips. There is some tingling over it, which is the neuraglia part. All very constant. All very painful. I also get finger tingling and some stomach issues. I had neck and back muscle spasms but I got rid of those.

Pysically the trigeminal neucleus and the TMJ joint are seperated by bone, but i suppose if there is enough inflamation and swelling it could put enough pressure there, or at least kick the central nervous system into over reacting.

Have you ever had trauma to your face? Has your neurologist already ruled out MS as a possibility?

Mine started a few weeks after a filling was done to a tooth. Bad dentist didn't check my bite enough. pushed my jaw up and back.

Before I thought this could all be TMJ I had an MRI of the head, MRI of the neck and CT scan of sinuses and head. Also a full blood panel. Everything came back normal.

Had no idea a bite adjustment could be this destructive.

Hi..It has been a couple of weeks and i was wondering if your tmj / tn problems have improved any with your treatment...I saw my NM dentist last week and she has given me hope...She did say that the Tn is related...and confirmed that it was a result of the tmj problems advancing...she also said that over time it can become constant ..as is yours...she described the pain most common in men ...can shoot down around the lip area...I have noticed some of my doctors call it TN...and some simple call MFP...I do know that I have muscle spasm in addition to shooting bolts of pain...And I feel without a doubt mine TN or Myofacial pain is a result of my tmj problems...The NM is going to wean me off of the Medications slowly once I get my orthotic and will not be treating me any other meds..

I tried topomax to help with my insane headaches (I don't suffer from neurological issues except some tingling and numbness in the fingers) and it seemed to help a bit, but at a very low dose. Anything above a low dose and I got extremely sick with side effects - essentially it made me an invalid (too weak to carry a purse) and it totally destroyed my sleep (had an effect like speed, even on a fairly low dose). Everyone is different of course, but for me this was the worst of all the drugs I have tried in terms of side effects.

I also cannot sleep on the sides of my face or I wake up in serious pain. I bought a bolster to put under my legs - most people use these for postural issues (it helps the lower back) but I found it amazing to stop me from turning over in my sleep. You can also make one yourself (not perfect shape but it does the trick) by taping big (and long) pillows together.

Good luck in your recovery!

If a pill has side effects...I usually get them all....I think I'll stick with the neurontin for now...as it does help at night....what a great idea...using the pillow...I will defiantly have to try that....Thank You !!