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TMJ?? - severe dizziness


#1

My TMJ problems started few years after having lots of dental work done in 2014 (crowns, bridges etc). At first I had headaches right above my eye and behind it. In April 2018 my jaw locked open approx 10 minutes during dental procedure. I was able to unlock it but my dentist did not mention to me that I have TMJ issue and should have this checked out ASAP. In June I started getting severe dizziness and had pressure on the back of my head. Other symptoms were clogged ears, ear ringing, very stiff neck, fuzzy vision, numbness in right hand. I did not connect dots that the dizziness could have been caused by TMJ. Therefore, I went to ER 8 times, was admitted to the hospital, had multiple MRIs and CT scans of brain, neck and jaw. All type of blood work done. I was checked by ENT, control disease doctor and neurologist. There was nothing wrong with my neck C1 or C2. My thirod levels were good. All tests were negative and none of the doctors could figure out why I felt so dizzy and lightheaded. None of them mentioned jaw.
At this point I decided that maybe this has to do something with my jaw and went to TMJ dentist specialist. CT scan of my jaw showed that my bite was off and my lower jaw was pushed backwards pressing on ears, veins and nerves. I agreed to splint therapy $5000 that I have to wear 24/7. Now I’m 2 weeks into the treatment and dizziness is still severe. I also started therapy with chiropractor on my neck. But nothing is helping. I never was much in pain so this is not an issue but the dizziness in ruining my life. I feel constantly dizzy or about to faint. I am unable to drive since June and not able to work almost 4 months. Did anyone have gone through similar situation? Did the splint therapy work for dizziness and how long did it take?


#2

Imho dizziness is mostly caused by issues with the inner ear (which might be caused by some external influence eg hypertension) and potentially also by neurological issues or a combination of the two.

TMJ? Don’t believe that for a second. Quack medicine.


#3

I have severe, long term TMJD. My disk on the left side is pretty much gone and the jaw bone (condyle) is remodeled such that about half the bone is missing. It used to hurt a lot. Sometimes it still does but the bone wearing away meant it stopped clicking. There was a time there when I had hairline fractures in my skull radiating up from my TMJ. So yeah, TMJD is totally a real thing.

I also have a vascular loop on the left side auditory nerve (vestibular paroxysmia) that causes vertigo if I’m not careful.

So, both of those known issues aside, my dizziness and nerve issues and all my other MAV symptoms are just that, MAV. I didn’t get better until I treated it with lifestyle changes and medication, specifically Effexor. My issues are pretty clearly migraine variant balance disorder starting in the brainstem.

I’d still like a TMJ splint to reduce pain and stop my jaw from dislocating.


#4

How did you get this diagnosed? Were there any specific tests done to prove that the dizziness is MAV related or rather it was assessed based on symptoms? I’m looking into MAV as well. Need to find one around me since all other tests are negative and jaw was my only issue.


#5

Hello Aga,

Diagnosis of any vestibular issue is a long and winding road. If you read our Wikis here, you’ll see there is a lot of testing and medication trial and error. The problem with MAV (aka Migraine Associated Vertigo, aka Migraine Variant Balance Disorder, aka Vestibular Migraine) is that there is no such thing as a definitive test. It’s a collection of symptoms and a diagnosis of exclusion, meaning they can’t find anything else that’s wrong with you. Some here have inner ear issues. Some have migraine. The state of medicine today means we really can’t test for a lot of things because we just don’t have the knowledge and equipment.

My case was typical and abnormal at the same time. I thought I had constant sinus infections. After multiple unsuccessful rounds of antibiotics by GP sent me to an ENT. The ENT did a CT scan and noticed that I don’t even have the front half of my sinuses (a fairly common birth defect at 12-13% of the population). My issues were migraine masking as sinus issues. That’s the typical part. The abnormal part is that my years and years of dizziness, head pressure, headaches and ear issues bloomed into full brainstem auras. I’ve written a thesis on that recently in another post.

In terms of testing, I’ve had the typical MAV round up of MRI/MRA with contrast, X-rays, blood testing for autoimmune disorders, vestibular testing, auditory testing, eye tests. I know about the vascular loop because of the MRA. My inner ears aren’t well coordinated, but not extremely off. My eyes don’t have nerve damage, glaucoma or any other suspect issue. My hearing is better on one side than the other, but that was the result of trauma that happened after MAV developed. I have scads of MAV symptoms and not much else to explain them. So, MAV.

The other thing, is that mine responds to typical drugs used to treat MAV. My best med now is an SNRI.

MAV isn’t well known or understood. Your best bet is to read our Wikis. Read Dr. Hain’s pages (referenced in the Wikis). Create a symptom diary for a month. Take all that info to a neurologist or an oto-neurologist.

Oh, and welcome to mvertigo!


#6

hi, there is a study at unc chapel hill looking into the relationship between tmj and migraine. If this is a hypothesized relationship, it does not seem crazy to think that dental work caused tmj and then tmj caused mav in your case.
I wear a mouth guard, and it has helped with jaw pain.


#7

Just to add to my thoughts on this.

Whilst I cannot immediately see how TMJ could make you dizzy (what influence can external muscles and tendons have on your labyrinth?). It’s absolutely crazy to believe anyone who comes up with a theory for dizziness that has no detailed explanation. If your car breaks down, do you accept it was because the back bumper paint was pealing off?! Please explain how the two are connected? Don’t accept wafer thin wavy arm BS as an explanation for dizziness especially if there is a financial incentive involved: dentists have every incentive to be vague and just accept your money.

However, there might be another connection: Eustachian Tube Dysfunction. If you jaw was so bad it was impacting the natural way in which jaw movements ensure the Eustachian tube is kept clear and functioning correctly, then maybe this could have a knock on effect on inner ear homeostasis. There is a belief that eustachian tube function directly affects the regulation of the perilymph somehow in the inner ear (along with a lot of other influences!). If your eustachian tube blocks up regularly and your TMJ prevents the natural clearance of this blockage, then maybe?

Have you had an ENT pressure test to check for ETD?

But in any case, the truth is regulation of inner ear fluids so complex as to be currently beyond science to explain the mechanism. In light of that I would treat any explanation for dizziness (including mine!) with a healthy pinch of salt until we are more sure how everything works.

I wish you luck in treating your TMJ. I’ve had it and it’s horrible. Luckily it is resolving slowly, but it’s taken years. Follow the standard guidelines.

Good luck with finding answers for your dizziness and a protocol which helps relieve it.


#8

Hi

I must admit I had to Google ‘TMJ’ when I first came across it recently. Didn’t have a clue. Apparently it can cause dizziness. Quite renowned for it it seems, How similar the symptoms are to MAV I really haven’t done a detailed comparison and it’s often difficult even for the medical experts to reach a definite diagnosis. I’ve twice been given a ‘probable MAV’ diagnosis, that’s as near as I’ve got. Any comorbid condition, and face it most of us have something else that could be relevant, will often muddy the waters and other hypotheses kick into play. Many MAV cases are designated multifactorial and may well be. As @flutters says your best bet is to have a good read around the subject, do a detailed diary (and possibly medical history too) and take it along to a neurologist or neuro-otologist, and see what transpires. Helen


#9

Hi, I wanted to give you an update on my situation. I am on week 9 of wearing splint and the symptoms improved but are still disabling me from normal living like driving car or working (dizziness, brain fog and neck muscle tension). I have seen today another TMJ specialist at University of Maryland dental school and was prescribed Norotriptiline since he thinks my nerves in face, neck and head are on fire. Like I developed some over sensitivity. This could have started because of the jaw issue but it’s a separate illness. Also he referred me to otolaryngologist at John Hopkins hospital which I am going to see next week. I will you give an update next week in case I find out something. Hope you all are doing well.


#10

I get the nerves on fire thingy and i attribute it to MAV. Currently on effexor helping me with that.


#11

Noritriptyline is a common MAV medicine. A lot of people here have found it effective.


#12

I took Nort last night but today I feel more dizzy. I had to cancel my Chiro appointment. Is this normal? Will it improve soon or should I stop the medication? Thoughts?


#13

All the meds make you feel worse before you feel better, usually for a couple of weeks. You have to give each med at least 4-6 weeks before you can decide if it’s helping. That’s also true when you change dosages. It’s all trial and error. It took three meds before I settled on one that works. They also all have side effects. Some fade with time; others linger. You know you have the right med when you feel so much better you wouldn’t consider dropping it even with side effects. You likely have MAV. It’s a long term issue. Start thinking in months and years.


#14

@flutters is right, the meds can make you feel worse for awhile, although I’ve found that if you can take a much smaller dose to start with its less likely to make you feel worse at the beginning. I’m on two preventative medications now and started them both at tiny doses and noticed only positive affects as I ramped the doses up. Well, okay I guess the blood pressure med made me a bit whoosy at first, but it was relatively minor.

Nort, like all MAV meds, is a preventative medication which means you really shouldn’t judge how well its working until you take it at a significantly high dose for 3 months. If you are really feeling awful on it and are thinking to quit taking it, try to lower the dose to the minimum for a few weeks. Hang in there! MAV progress is measured in months, you will get better.


#15

Thank you for responding so fast. I suppose to take it for first week only 10mg and then second week 20mg and thrid 30mg. I will keep taking it since I have no options other then try. Doctor told me it may take 2 weeks for side effects to settle. I will keep you posted. Thank you for your support. :pray:t2:


#16

You might want to slow it down further. 10 for a month, then 20 for a month, then 30 for a month. These are psychotropic drugs. Give your brain a chance to ease into them.


#17

Make sense. Great advice. I am looking forward to the meeting with otolaryngologist next week. Do you know what should I expect? I had audiology test done but not VNG. I have VNG scheduled for 1/7/19. Are they any other test he can perform?


#18

Well, VNG is not too fun but its worth getting some data about your vestibular system. Why isn’t it fun? They make you feel like you drank 10 shots of tequila with the lights out and so the room spins. It sucks. But its over in a few minutes and it didn’t worsen MAV more than a day.

My ENT did VNG first then a few months later we went for additional tests such as a posturography and rotating chair. Those tests were child’s play compared to the VNG, although some find the rotating chair difficult as well. You can review the whole battery of vestibular tests here:
https://www.dizziness-and-balance.com/testing/ENG/engrot.html


#19

So far I’ve had VNG, auditory, visual, MRI/MRA with contrast, blood work. Some folks get an EEG. I missed that one somehow. MAV is a diagnosis of exclusion. So, if they don’t find some other bogeyman, MAV’s probably the diagnosis. We’re mostly normal or slightly off on one or more of the tests. It’s expensive, fraught and time consuming but you find out all the truly horrible things you don’t have, so that’s something.

Whatever you do, don’t eat before the VNG testing. Trust me on this. And if you’re the type that’s prone to the headache part of migraine, bring something with you to take as you walk out. It’s worthwhile to bring dramamine (bonine) or some other vestibular suppressant for afterwards since these tests tend to take you from baseline to please just kill me pretty quickly. That’s ok. It’s worth the knowledge.


#20

I got done multiple MRIs and CT scans with contrast and no contrast of brain, jaw, neck and veins in neck. All good. Whole banch of blood work. All good. Ear pressure measurement which was correct in both ears. I believe the only things left are VNG and EEG. Also, not sure if this is valid point but my dizziness is more off balance and fainting feeling. The off balance feeling is constantly with me when I walk. And the fainting feeling happens when I feel my neck muscles getting tens. This symptoms appeared one day almost 6 months ago out of the blue and are present till today on daily basis. I do have better days and worst days.