I'm New Here And This Is My Story

Hi Everyone,
I'm glad this forum exists. I've been living with Meniere's disease for some time now. I wanted to write about my treatment journey in case it will help someone else. Mine is an atypical case as I've had episodic hearing loss, tinnitus and aural fullness in my right ear since my late 20's (I'm in my mid-forties now) but I've only had balance symptoms since July of 2018. The balance and vertigo symptoms are by far the worst part of this disease.

My treatment journey has been interesting. Hearing tests in my late 20's led to a tentative diagnosis of Meniere's, but with no balance symptoms at that time.

In July of 2018, after my first symptoms of vertigo and imbalance, I was treated for labyrinthitis with antibiotics. The first a 10 day course, and the second a 30 day course. The first 9 days of the 10 day course seemed effective, but symptoms returned on day 10. The 30 day course had no discernible effect.

Then I went to see an ENT who said I had an "atypical case" of Meniere's disease. He prescribed Meclizine, a diuretic, a low sodium diet (1500 milligrams a day) and physical balance therapy. I stuck with that until just recently. The balance therapy seemed helpful, and I have home balance exercises that I still do daily. I was tested for BPPV there as well, their people didn't think I had it. My symptoms reduced in severity, with less balance problems overall if looking at it month by month. The meclizine has no effect on vertigo attacks.

After this regimen failed to eliminate the balance symptoms, I started seeing an Upper Cervical Chiropractor who practices the Blair method. The theory being that by keeping the C1 and C2 vertebrae in proper alignment, the brainstem is not pinched or impinged in any way and can send good information to the brain. This also seems to have helped a bit, but has not eliminated the balance problems, they still come and go. I still see this chiropractor on a monthly or bi-monthly basis to keep my neck in proper alignment as I believe this can only help me.

In addition to the low sodium diet, the diuretic, and the chiropractor, I decided to add Vitamin B5 and B6 supplementation to my treatment as I had read positive things about that on this forum. This seemed to work well, as for about 5 months I was symptom free. But then the balance symptoms came back again.

At that point I had researched who would be the Meniere's expert on the east coast, and found someone at Mass Eye and Ear. I went to see him. His treatment was very minimal, he recommended against sodium restriction, believing that by severely restricting sodium intake, that you were creating a hypersensitivity. He recommended trying to keep sodium intake consistent throughout the day. And he recommended Lorazepam instead of Meclizine. His attitude seemed to be, "don't worry about it, you'll be fine". I upped my sodium intake, I noticed no difference in the symptoms, the balance problems would still come and go, with occasional vertigo attacks. The lorazepam was also not effective in reducing the vertigo.

Then I added an Omega 3 and Pycnogenol to my daily B5 and B6 supplementation, along with the diuretic. I did this for about 3 months but saw no real progress from it.

A month ago I went to see a naturopathic physician who has had some success in patients with Meniere's. He has directed me to start a low carb diet, focusing on meat and vegetables, nuts. No dairy, no gluten and no alchohol. Any water I drink has electrolytes in it. I also have protein shakes twice a day, as well as vitamin supplements. The idea is to reduce inflammation in my body. The vitamins I am on are:
Protein Shake - Collagen Hydrolysate, 1tbsp and Solufiber blend, tsp. This is mixed with almond mild twice a day
Multi vitamin for BioPhenotype F - 2 caps twice a day with breakfast or lunch
B-Complex High Potency - 2 caps twice a day with breakfast or lunch
Vitamin D3, 5,000 IU - 1 gel cap once a day, anytime
Adrenal Complex, 2 caps twice a day, with either breakfast or lunch
Melatonin - dual release - 1 pill, once a day before bed
MyoSed - 4 caps, once a day before bed

Since starting this regimen I have stopped taking B5, B6, Pycnogenol, Omega3 and the diuretic. This has me feeling physically very good. I have been doing this diet and have not strayed from it AT ALL for 3 weeks now. I've lost about 15 pounds of body weight. The plan is to do this for 10 weeks and then re-assess. The theory as I said is to reduce inflammation in the body, to heal the body and get my systems working at maximum capacity so that the body's natural abilities to heal itself can take over.

Finally, I have recently started seeing a doctor who treats TMJ. She examined me and found significant tension around my jaw and neck muscles on the affected side (right side). Her exam was quite painful on the right side, not painful at all on the left. I have been treated once by her. She is trained in Myofascial release. My challenge with her treatment is that I often experience balance symptoms when going from a standing to a prone position, or vice versa, so lying on the exam table can be a challenge. She will treat me once a week for a few months and we will see if it helps.

So, that's my journey in a nutshell, I have tried to leave emotion out of it, the suffering out of it, and just focus on the facts of what I have tried and the results. I hope that my message finds you all well, and I hope that it might help one of you or at least provoke discussion.

Thank You,
Chris

 

IvanA that is funny how we seem to be lining up treatment wise. I go back to the Naturopath in early November to see where things are going. Starting week 4 now and though symptoms are still present when lying down at night (to a small degree), I feel I'm making progress. I'm looking forward to my diet expanding a little at the 10 week mark in early November. Though I feel good, it's hard to be faithful in that belief, the disease is always shifting and changing. Just this morning, my tinnitus has gone much quieter. My wish is to eliminate the big attacks, if I can do that then I will be able to live a mostly full life. I do feel strongly that there is a connection between the tension I carry on the right side of my body and the symptoms, I'm just not sure what exactly that connection is yet.

I still have not explored the anti-herpetic side of things like lysine, etc.

And yellowboy, I'd be curious to hear more about your TMJ treatment, what is being done for you, is it helping your symptoms?

 

Hi Yellowboy, if your TMJ is that bad why not seek treatment for it, if you don't mind my asking? Your jaw dislocates on it's own?

 

Hello everyone, just a check-in and I know I haven't been on this forum for a long time. I have made very significant progress since last I posted. In my particular case, the bulk of the progress I've made is through physical therapy through my naturopathic physician. Specificially what he calls manual tissue work, which basically entails him probing your upper musculature for imbalances and then releasing them. This included my shoulders, chest, upper back, lower back, chest, stomach, arm pits, pretty much my whole upper body. At first this therapy was very very painful, then it became easier but still quite uncomfortable. After about 9 months I felt somewhat normal in my neck and shoulders. The severe vertigo attacks stopped about 3 months after starting this manual tissue therapy. I also did some dry needle acupuncture with this same doctor during this time period. This physical therapy, more than diet or anything else, has been the key in my particular case. I have mild to moderate scoliosis, and the unlocking/releasing of the muscles in my upper body seems to have been the key to relieving the more severe symptoms of my meniere's disease. As of today I have gone over 700 days without a vertigo attack. I do daily neck stretches and I also did some eye/brain therapy prescribed by an anti-concussion doctor that helped as well. I wanted to check in with this community to post this information in case there is someone else like me with a physical situation that is the primary cause of the symptoms.

As of today, I see an upper cervical chiropractor every 6 weeks for an adjustment of my upper cervical spine. I see the naturopathic physician quarterly for manual tissue work which is essentially deep tissue work on my upper body. every 3 months (quarterly) I used to see someone at my eye doctor for brain/vision therapy but no longer do that. and I take daily vitamin supplements. I currently live a normal life, and am able to do pretty much what I want to do physically, the only restrictions are a lot of strenuous activity involving my back and neck muscles will cause things to tighten up and then I feel off balance slightly. Other than that , I can n pretty much do what I want. I hope you all are doing well, and managing as best as you can. If I can be of help in any way, please reach out.

 

It really is a weird disease, I hesitate to even call it that, it's really collection of symptoms. My naturopathic physician has referred to me as "an experiment", and stated that he really didn't know if he would be able to help me or not. Luckily for me he did. It was strange to progress through the physical therapy piece of it, as it took my body many months to adjust to the new normal. There was also a lot of work done on my jaw on the affected side, those muscles were very very tight and bound up.