I wanted to ask for advice; my mother in law was just diagnosed with TN and is miserable. She has never been able to tolerate any type of medications, so the ones she’s put on are making her very sick. Since my brother in law passed away she has custody of my nephew and my father in law has Parkinson’s. These medications are making her very sick and she can’t drive right now so I’m on the other side of the country and trying to find any help I can get.
I think maybe if we find what caused it, might give us a better idea of what path to take? She went to the dentist for a procedure and receives many shots in her mouth and around the base of her tongue before her deep cleaning. But the weird thing is her tongue stayed numb for 3 days. Then the pain started a year later only in her tongue and then out to her face. I have heard of a chiropractor as being a help but didn’t want to recommend that first if it stemmed from a dental procedure. With her medications she’s tried just about all the seizure meds and they make very sick.
Any advice or recommendations would be greatly appreciated.
I also had a deep cleaning and ended up with TN. During my horrible attacks, I get on a high level of oxygen with heat on the right side of my face.....if I can't stand the pain, I get an Imitrex spray up my right nostril.
Recently got on Inderol and the attacks are GONE!!!!!!!!
Hello and welcome, I just wanted to stick my two cents in, I have never found the cause of my TN and from experience talking to some of the best neurosurgeons it doesnt really matter why, unless it is a tumor etc. A good neurologist will have her get a Fiesta MRI, it is very specialized for this and will show if there is any reason, a compression or nothing. Even if it doesnt show a reason, that doesnt mean she doesnt have TN.
I spent a lot of time wondering why , and I found that my time and energy was better spent just researching and finding what would "cure" me or make the disorder more tolerable. Just my two cents.
Wendy
Thank you for taking the time to reply, I’ll pass along the information!
just curious what area does she live in, perhaps we can find some referalls on here for a doctor in her area.
I couldnt tolerate the anti seizure drugs either, they were horrible and the side effects were almost as bad as the TN. I now am on antidepressants and narcotics and feel much better. There are so many combo's of drugs for this, she just has to try some out and find what works for her.
Wendy
She lives in Virginia right out side of DC
does she have tn1 or tn2? traditional tn1 is lightning strikes , tn2 is boring pain in the ear, teeth feel like they are going to explode. I have both, and I also have it on both sides, but my right side is the worst.
I will send you an email
wendy
oops, cant send message, unless you friend me, was going to send a few suggestions for people in her area
wendy
It’s lightning strikes in her tongue that radiate out her face.
Johns Hopkins in Baltimore may be someone to try, Dr. Michael Lim...he did a glycerine rhizotomy on me for the lightning strikes and it really helped with that, but not the "a-typical" pain. They specialize there in TN1. That wouldnt be too far for her to go. Thats why I asked which type, since they only specialize in the one type...they also have a very informative video of Dr. Lim going over all the different treatments, its on thier website and worth watching just to gain information if nothing else,
Wendy
I'm curious why you think it's related to that dental procedure if it started a year later? Most of the cases caused by dental injury that I have seen start within a few weeks of the procedure. I'm not saying it's impossible, it's just not as likely with such a long period passing. Unless she's had small symptoms the whole time but was able to ignore them.
If it is a dental injury, and based on your profile, I'm assuming she has Type 2 or TNP, not classic TN. If this is the case, a drug like Amitriptyline or Nortriptyline (a tricyclic anti-depressant) should be a first line of treatment. If this helps the pain, it will point you in right direction for treatment options.
If she does have electric shock type pain, she needs to try Tegretol (anti-seizure meds, guessing she has tried this) as that is the first line of treatment for classic TN.
Once you've determined her pain type, then she might need a combo of meds. Also, if the main pain is in her tongue, she might have Burning Mouth Syndrome. Another good med for this is Klonopin, which is technically a Benzo (like Valium), but also has anti-seizure qualities. It is very easy to tolerate, and works the first time you take it.
I know the seizure meds make her sick, but do they ease the pain? Which meds she responds to is very important, as it is one of the determining factors of her diagnosis. She should probably try only one new med at a time, otherwise you won't know which one is helping. (however ultimately, it's likely she'll need a combo of meds)
Since she dislikes all meds, you might have her try taking a topical med that she can rub on her gums or tongue or wherever, such as benzocaine. It is an over the counter med and it will numb the area. Not only will it give her some relief immediately, but with continued use it helps by desensitizing the nerve endings in the area. (Always be careful applying numbing agents to the tongue - you don't want her to bite it. The benzocaine doesn't make one fully numb, so it might be okay. But she should definitely use it on her gums first.)
I see you're in California, but not sure where. If you're in Southern California and you're interested in the best Orofacial pain doctor on the West coast, I could refer you. Though the first visit is somewhat expensive, you could bring all her scans and tell the doc her story, and that might lead you in the right direction. If she has the electric shocks, then I would not recommend this appt. This doctor is best for dental injury pain, or mouth and facial pain of unknown origins.
Hi:
I wanted to comment on Tegretol, being the first line of treatment for classic TN.
I was never given Tegretol, and until I went to my 3rd neurologist, (who is my current one now) never knew why they
wouldn't give me it. If you are post-menopausal and female, most neurologists will be hesitant to give it to you because it
can contribute to osteoporosis. Your discussion here, states that there are alot of medications that can be tried. I was only given Trileptal, and that is very ineffective after a short period. If I had upped the dose, it made me sick.
Everyone is different, and not every drug or treatment will work effectively for everyone, though, but they are worth trying to see how it might help if your doctor says it is ok
My doctor said it was ok for B12 injections (to try it) After a few months my symptoms kept getting better and better. They have research about this from the Tacoma Clinic, in Renton, Washington. There are no side effects from this either, but it isn't an option for everyone. Neither is Tegretol or Enderol. But it is good to know about these options so we can research them further. (however, my doctor said that unless you are a naturopathic doctor, it is hard to give out B12 injections, because you may have to test low for B12 in your blood stream. I never tested low, though.)
I like the freedom we are given here to discuss the issues. I would hate to think that someone or something would suppress this freedom. I even heard of the low-fat diet (extremely lo-fat) helping many, many people with Trigeminal Neuralgia. It is supposed to help in one month's time. However, it never helped me, even though I tried it for 2 months. You are supposed to have 10 grams or less of fat a day. Just thought I would throw this out incase this can even help just one person. (EVEN THOUGH IT DIDN'T HELP ME) and it is free.
Yes please share the link
I am wondering also if mine has stemmed from having my wisdom teeth taken out. July was a year ago.