Sound familiar anyone?

Hello,

I’ve had this condition for eight years. It’s been well controlled by propranolol and I have long good phases interspersed with pretty bad symptomatic periods. I am in one of the latter right now.

Anyway, I flew about 8 weeks ago - long haul, night flight and the jet lag and flying definitely kicked off a new burst of symptoms. On top of that I had a period of depression for a couple of weeks. Hot tip - don’t get depressed, it definitely makes this condition worse.

Anyway, a new development is much louder tinnitus. I have had tinnitus since I was eleven but it has ratched up a good few notches for the last few weeks. I used to always get intermittent increases in tinnitus during symptomatic phases but it would die down again. This is more prolonged. Accompanying this is a feeling of tightness in my ears and brainfog. All these symptoms increase if I push myself or get tired, so concentration or exercise are a challenge. It’s concerning as I have a job to do of which concentration and ability to think is a huge part. I also get feelings of pressure through my face/nose.

Prior to getting my mav diagnosis I was diagnosed with tmj - my jaw works fine, I just clench my teeth - especially when stressed. I think the clenching went off the scale when I was depressed.

I am curious how much of what I am experiencing is down to purely mav, or if it’s a tmj/mav combo.

Would be interested in what other people’s experiences are with tinnitus here? Does it fluctuate? Is it worse when your other symptoms are worse? Is it accompanied by a tight feeling in your ears?

Any input would be appreciated,

H

Hannah,

I get the tightness inside my head and brainfog can be there too. Infact if i don’t get plenty of sleep i can expect the brainfog with difficult concentration to be there…big time! So you get the tightness in the ears and i get it in and around my head and temples…it’s probably the same. All in all after all these years with this condition…not getting enough sleep is the worst for me.

Joe

Hannah - it appears to be MAV to me. What you are going through is exactly where I was a few months ago. I’ve been on Effexor since Feb, and it’s about eliminated head issues…but the dizziness remains. One good benefit from the Fex is it’s an anti-depressant…so at least my anxiety level about this is low.

I have tinnitus as well…but I’ve found it to fluctuate based on the intensity of the migraine attack. A big problem with me is sound…can’t stand loud music. I take earplugs about everywhere I go (just my luck I’ll run into a “yippie” Yorkie). As for flying…no way. That seems to be a huge trigger for nearly all on here, and I’m looking to take the train or drive to my destinations.

Regarding TMJ, I know there are some folks that attribute this to a bunch of head issues. Maybe so, and I think I have it, but I’ve had it all my life too. Why now with the MAV? To me, their not related…but who knows.

Hope you are able to find some relief.

Mitch

— Begin quote from “Hannah”

I am curious how much of what I am experiencing is down to purely mav, or if it’s a tmj/mav combo.

Would be interested in what other people’s experiences are with tinnitus here? Does it fluctuate? Is it worse when your other symptoms are worse? Is it accompanied by a tight feeling in your ears?

— End quote

Hi Hannah,

My guess is MAV is certainly at least part of it, but I wouldn’t exclude a MAV/TMJ combo. I’m exploring whether my TMJ is impacting my migraine condition myself right now. I may be chasing down another rabbit trail, but I definitely have TMJ; I am a horrible clencher; and at a minimum there is a connection between the TMJ and the tightness in the muscles in my jaw and neck. Whether treating my TMJ will relieve some of my overall symptoms including tinnitus is yet to be discovered.

To answer your specific question, my tinnitus is constant and fluctuates everyday. It is definitely worse when my other symptoms are worse. It is sometimes accompanied by a tight feeling, or fullness, in my ears, but not always. When I was first sick and the tinnitus started, the fullness was always present, only varying in severity. Now, it is rare.

The Zonegran I take for migraine has relieved the constant pressure I used to feel in my head, face, and nose.

I’m curious as to whether you have ever been treated for TMJ and if so what were the results?

Marci

Hi Hannah,

I am also a migraineur with TMJ. Hard to know sometimes which is at play as migraine and TMJ can result in very similar symptoms like jaw, face, neck and head ache. Also, both are very very common - migrane occurs in about 10-15% of the population.

My dentist is quite elderly (70s) and is a TMJ expert (lectures at the Uni) and he said my TMJ is one of the worst he’s seen! What a great honour! My migraine symptoms were very clear up until about age 30 - I had the visual aura - but now they are a weird and horrible spectrum.

I also get a lot more “migraine vulnerable” with jet lag, although flying per se doesn’t seem to be a problem. I got a bit smashed around last year after a 34 hour flight to Helsinki from Sydney but Valium helped a lot. I’m doing a flight (actually I think about 3 flights in total) to get back from Helsinki to Sydney in a few weeks. At least then any fall out will be after the holiday (I’m flying from Sydney to Beijing to do the Trans Siberian railway) and the flying is all in the day time so hopefully not too hammered by jet lag.

I guess the key to both TMJ and migraine is management - neither is “curable” so the best we can do is try and keep them under control. No easy task…

Vic

Hello,

Thanks so much for your replies. It’s interesting to me how many people are clenchers on here. Seems it is a bit rigger or contributory factor when it comes to this. I definitely know my dizziness/vertigo has nothing to do with the tmj, it’s just sometimes hard to know with the tinnitus and tight ears which is causing what as people with no dizziness who suffer from tmj experience these.

In answer to your question Marci, in the first two yrs of this illness I used an NTI tension suppression system. If I had the will, time and money I would be sueing the dentist who gave it to me as it totally altered my bite. I now have what’s called an open bite, only my back teeth meet. Fortunately this isn’t an aesthetic issue, it’s not noticeable when looking at me, but it does make eating difficult sometimes. This was given to me by a private dentist who should have warned me that this happens to 5% of people - I should have been made to sign a disclaimer. Anyway, enough about that. Afterwards I was seen at an NHS dental hospital in London, uk (where I live.) It’s one of the best. They don’t believe in any treatment other than gentle stretching (I saw a physio briefly) hypnotism to combat stress and using a bog standard michigan splint - one that fits over all of your top teeth. I don’t use it but now things are kicking off again I will probably try it again, but as it doesn’t hold my teeth apart like the NTI I think it can actually make the face ache from clenching worse for me as I just bite down on the plastic instead of my own teeth.

In short I looked in to it loads when first diagnosed and concluded that all of the new methods - neuromuscular dentistry, splints that will move your teeth around, surgery etc… are all quite new and I came across a lot of patients who had ended up worse off. It was all very expensive, a lot of dentists were making a lot of money out of people’s desperation and as I can eat and chew and talk (unlike some with very severe cases of tmj) I decided to run a mile and just work on lowering my stress levels. I’m not saying none of this stuff could work, It’s just a very new field and I didn’t want to be a guinea pig. I haven’t looked in to it for a few years so who knows maybe things have moved on a lot.

H

Hi Hannah,

I have a full upper mouth guard, but I too found it just gave me something nice and hard to bite down on. It may have helped protect my teeth, but certainly wasn’t helping my jaw any. I mentioned the NTI to my dentist and he strongly discouraged it. What he did instead was fill in the front of my mouth guard so that I couldn’t bite down, similar to the NTI, but my lower jaw moves around freely. Well, this isn’t really working for me either because I wake up at night shifting my jaw back and forth trying to saw into the mouth guard with my front lower teeth.

I went to an orthodontistic a few weeks ago. He confirmed what you say about the NTI. He said it is very bad and can change your bite in a negative way. He referred me to a dentist who has specialized in TMJ since the early 80s. I have an appointment for the 1st of June. He also recommended physical therapy. I’m not looking to do anything drastic. I just wish I could get a splint for nighttime that would hold my jaw in a comfortable position and prevent me from clenching. I’ve been trying not to clench during the day and I’ve been stretching.

Marci :slight_smile: