TMJ, MAV, or Meniere's?

HI folks…posted this on menieres.org and it was suggested I try here as well. What are your thoughts?

Hi folks:

Just joined. I’m a newbie here and going on 8 weeks of unsteadyness / vision issues. I’m curious to what the experts here think of what I’m going through.

Here is my history:

2/8/10: Started feeling dizzy with some strange vision…like I was drunk or on something. Thought it was GI related as it was similar to something I had in the past.
2/9-224/10: Symtoms would come and go. I would sometimes notice that my right ear felt full (I’ve always had “bad ears”) and my vision at times felt wierd. I had a stripe aversion…not nice to look at certain patterns. Hmmm…
2/24/10: Visited my GI doctor who ran a slew of blood tests for Celiacs, malabsorbtion, thyroid, endocrine, etc. Also scheduled a gallbladder ultrasound and upper endoscopy for early March.
2/26/10: Visited a Chiropractor for the first time thinking the whole thing was stress. He adjusted my lower back, shoulders, neck and jaw. I told him I had injured my jaw back in college (16 years ago) and he confirmed it was out.
2/27-3/2/10: I felt better than I had in weeks. My jaw hurt and I had a weird sinus cold / drainage, but felt great.
3/2/10: Went back to Chiropractor and had same adjustments including jaw. Left feeling dizzy. Dizzyiness has continued until today.
3/4/10: Went to the ER thinking it was a stroke (don’t google “dizzy after chiropractor.”) Sent home. All normal. Anxiety?
3/5/10: Went to my PCP who suspected inner ear problem. Right eustacian tube is disfuntional (has been for years). Gave me flonase and told me it would clear up.
3/8/10: Flew to Arizona for work. Ears would clear fine on the plane
3/9/10: Flew home from Arizona…ears felt very full after this flight.
3/10-3/11: Ears were full and vision was weird (drunk vision). Dizzy / disequalibrium. Occasionally the right or left ear would get quiet and ring loudly for a few seconds.
3/12: Ears started to ring constantly. NOticed this was after eating cold pizza and straining my jaw. It is a low ring…but it is there. Left ear worse than right. I also notice the ringing is louder when I turn my neck to the left or push on the temple area.
3/16/10: Went to Tufts Craniofacial Pain Center in Boston…experts in TMJ. They think everything could be neck / jaw related based on previous injuries compounded by recent Chiropractor adjustment. will cost $3000 to start treatment, but they claim very high success rate. Not covered by insurance. Tufts is one of the best TMJ places in the country.
3/19/10: Went to an ENT who looked at me like I was crazy. Did a full battery of audio tests. Hearing / ear drums all normal. Right ear eustacian tube is disfuntional (as it has been since 2002). He felt it could be something viral or “pre menieres disease.” Schedule a full battery of vestibular testing for next week. (ENG, ECoG, ABR). Tested for Lyme and Thyroid. ALl normal.
3/22/10: Visited Neuro-opthamologist. Initial exam was fine. no major neurological disorders.
3/25/10: Went to a new Chiropractor who was great. He didn’t do any adjustments, but pointed out how bad my muscularskeletal system was. One hip higher than the other, one shoulder higher, TMJ…right side pressing up and back too much…disk moved forward. This causes left side to pull and disfunction.

This is where i am today. My second daugther was born on 3/27…should be (and is) happy times. But I don’t feel right. I’m trying to be supportive of my wife / baby and first daughter.

My symptoms today are (in order most frustrating to me)

  1. Weird vision. Like I’m drunk. 24/7. I have an aversion to stripes and am more sensitive to light. Shopping in stores is bothersome. I swear I sometimes see light patches in my vision (very faint) like when you stare at a lightbulb…except they are barely visible.
  2. Disequalibrium…not vertigo. LIke I’m drunk. 24/7 It is primarily unsteadiness.
  3. Tinnitus…high pitched in both ears. Left more than right. Volume is low (thankfully)
  4. Ear fullness. Right more than left. This comes and goes.
  5. Jaw sore
  6. neck sore

So…big differences I see are my issues are 24/7 and I don’t have vertigo. Nothing is spinning per say.

I feel like I’ve been in a trance for 8 weeks. I’ve had Anxiety as it has been so long and all I see on the web are people who feel similar and who have had no relief. I’m worried I will not be able to perform at work and will lose my job, and put my family in financial jeopardy. I am now on Prozac to deal with the anxiety. It is helping.

I also don’t get something…I had some symptoms before my first Chiropractor visit on 2/26. But after this visit, I felt great for 4 days, aside from my sinus / head cold (which I got 15 min after leaving the Chiro.) And then why did I feel terrible after the second visit? It was like a switch was turned on and it still hasn’t been turned off. What about my vision…does anyone else have these problems?

What are your thoughts from the experts here?

Not an expert here by any means, but by what you describe, I would lean toward TMJ with a possibility of MAV. Sounds like a weather forcast right. Because most things seem to be triggered by things to do with your jaw. From what I understand, because of the jaws proximaty to the ear, TMJ can cause all sorts of odd inner ear type problems. The chiropracter visits and the broken jaw history are also indicators. The only thing that jumps out at me as MAV possibilty is the type of food you reacted to. Pepporini pizza is very high on my no-no list. Thats are hard one to say which is causing what problems. For the possibility of TMJ, I would recomend starting with a talk with your dentist.

BTW, I understand the need to feel like you are providing for you family. I started showing symptoms within a couple of days of my first son. I am currently falling every few minutes if I try to stand or walk for ANY length of time, and have many different issues caused by the dizziness. I am not working at this point in time and I am dealing with mental issues this is creating.

Keep doing what you are doing, talk to your doctors. Do some research (as it appears you have started) and ask your doctors questions based off of the research you have done.

Hello,

I have had MAV for coming up eight years - get a lot of relief from propranonol which lets me lead a normal life a lot of the time. And yes, I have had those vision issues and most of the symptoms you describe.

Just wanted to say I am a teeth clencher and went down the tmj road when I first got ill. After tons of research and visits to various dental specialists and neurologists, I came to the conclusion that tmj plays a part in dizziness and the type of symptoms you describe but isn’t the whole story. If I had to hazard a guess you have MAV which can be triggered/exacerbated by neck/jaw issues.

I spent a long time on tmj support boards and noticed something interesting. On there were the most extreme tmj cases - people having surgery because they couldn’t eat etc… A tiny proportion talked about dizziness and it definitely wasn’t top of their list. If tmj could bring on dizziness in a big way you would expect them to be complaining of it. One neurologist dismissed the notion that tmj could cause this completely and said, which I think is true, that migraine is often misdiagnosed as tmj.

I spent a lot of time visiting dentists and spending money of night guards etc when it was actually a migraine drug that ultimately helped me. If the tmj is causing you problems by all means treat it - (a simple nightguard can do some good) jaw and neck issues, as I said, can trigger and exacerbate migraine, but I would look in to treating the migraine directly too. By the way, just my opinion but if anyone suggests operating on your jaw, run a mile. These type of surgeries are still at an experimental state and there are lots of casualties out there who have ended up a lot worse post surgery. The only people who should be operated on for TMJ are those whose jaws have locked and their condition is life threatening. I was seen at an NHS (non profit making)dental hospital in London, one of the best and they don’t operate on people unless it’s deemed life saving. TMJ is a big money spinner for dentists, so be very wary of people offering you invasive treatments.

The sensitivity to light you describe and seeing lights in your vision are both migraine symptoms and things I experience. TMJ does not cause photophobia, migraine does. Many people with MAV have 24/7 symptoms and the vision issues and dysequilibrium you describe. If I’m honest it’s not unusual for a chiropractic adjustment to trigger an attack, it can be luck of the draw whether it makes things better or worse. Flying is both a tmj and MAV trigger, so the flight might have brought on an exacerbation of both. I have big problems flying. Another trigger for migraine is lack of and interrupted sleep, or just a big change in sleep patterns. I notice you have a new baby - often a time of interrupted sleep.

There is a poster on here who got ill around the same time I did. She had,had issues with TMJ for years - she was a chronic teeth grinder and had tried every treatment going for tmj. She thought the tmj might have brought on her sudden 24/7 dizziness. Eventually she saw a neurologist who put her on a migraine drug which set her on the road to recovery.

Don’t panic, you will get to the bottom of this and get well. I would strongly recommend seeing a neurologist who knows about MAV.

Hope this helps,

H

Great post, Hannah.

bcb1200 - I think Hannah has it exactly right. I also can relate to nearly all your symptoms. I too have TMJ and neck issues that I believe exacerbate my primary issue, which is migraine. I suspect you are in the same situation. My first line of attack is to treat the migraine with diet, lifestyle changes, and medication, but I am also attempting to address my neck and TMJ issues with the hopes I can control those triggers and get that much closer to freedom from 24/7 migraine symptoms. I second Hannah’s recommendation that you see a neurologist familiar with MAV.

Good luck and take care!

Marci

My TMJ was a big trigger for me. I have had MAV for 2.5 years and started TMJ treatment last year and I am now a huge amount better. This won’t be the case for everyone but it has been the only thing that has worked for me as I struggled to tolerate any medication.

It was a big gamble to start the dental treatment as I didn’t know if was going to work and I had to find a reputable dentist who I could trust but it has been worth it.

Becky

Hi folks:

Just thought I would give an update. I was diagnosed with Lyme disease on May 3rd by an LLMD (lyme literate MD.) My ENT did a standard lyme test back in April but it was “negative.” I have since learned this happens more than 50% of the time. I kept pushing for answers and didn’t buy that my issues were anxiety or stress.

I found an alternative doctor who happened to be Lyme Literate. She gave me a western blot test for Lyme from Igenex…the best lyme lab in the country. I came back lit up across the board for lyme. One thing I have learned is many of the worst off with lyme never test negative. It is a clinical diagnosis with the tests providing support.

I started treatment of multiple heavy antibiotics on May 10. My LLMD thinks I will be in treatment for 6-18 months. I most likely have two tick borne co-infections…Bartonella and Babesia.

Fast forward to today…I’m MUCH IMPROVED! 95%+/- most days. Dizziness is gone. Fishbowl vision is gone. TInnitus is much improved. anxiety is gone. brain fog is gone!

I encourage everyone to check out lyme disease by an LLMD. I have met dozens of people who were told by “main stream” docs that they had Fibromyalgia, Chronic Fatigue, Meneires, MAV, some for 10+ years, before they found out it was really lyme. You can get well with proper treatment. But only an LLMD can get you well. The mainstream cannot.

Check out www.underourskin.com

Cheers!

Oh my goodness. At the beginning of this I had a test for lyme, as I felt I fit the symptoms, but it was negative, and the treatments or MAV seem to be working for me. Congrats on your diagnosis and feeling better! Always love a success story!