WOW! Reading about all the different experiences w/ vertigo has been very enlightening. Mine started as a very loud, mind-numbing roaring w/ a high pitched over tone. It actually scared me...thought I was losing my mind. I've had some bizarre health, issues but this took the cake. It started about a month after I had a cycling accident w/ a head injury. The tinnitus would come & go, but I found it was worse if I did things that strained my neck (like holding my head up while sliding on my stomach down a Slip 'n Slide for an hour w/ my niece). I was also a marathoner (not fast...just determined to finish) & long distance hiker for about 12 yrs. I kept doing those things after my MD diagnosis in spite of my doctor's insistence that pushing my body would make my symptoms worse. Vertigo wasn't a problem for me until about 8-10 mos after my initial diagnosis. The long distance running/hiking definitely stirred up vertigo episodes once they started & probably accelerated my hearing loss. I finally had to quit because I wore my hips out & needed bilateral hip replacements. I've reduced my mileage & how hard I push myself physically, & my symptoms have definitely reduced (my doc resisted the urge to say, "I told you so" ). My tinnitus is constant, but I've gotten used to it. It flares once in awhile along w/ ear fullness, but I haven't had vertigo since Oct. 2022, & the only real change I've made is reduction in my physical activity. I have also started wearing compression socks when the weather is warm to prevent foot/ankle edema which seems to contribute to me getting vertigo.
Have you looked into a misaligned cervical spine and Atlas? Maybe you already posted about this.. (I have forgotten)... but I know my cervical spine can easily get out of alignment and cause vertigo. Wearing a cervical collar helps, as does stretching my trapezius muscles and sub-occipital muscles. The author of "Meniere's No More" (I think that was the name of the book) spent years investigating his own problem and finally found it to be due, in his case, to his cervical spine! Mine is chronically out of alignment due to my forward-leaning head posture and ankle fusion. There is a doctor in Florida whose web site, CaringMedical, lists all the crazy symptoms a misaligned and unstable neck can cause. Bladder irritability, dizziness, ear fullness, hearing loss, tinnitus, heart palpitations, fatigue....it's amazing the damage an unstable neck will cause. But he is long on diagnosis and short on solutions, unfortunately, other than an extreme course of prolotherapy. It's worth checking out his web site.
I'm familiar w/ CaringMedical from another forum that deals w/ cranial nerve & vascular issues caused by Eagle Syndrome. There is much info on the other forum about CCI/AAI, forward head posture, EDS, etc., as potential causes for ES. I've had two head injuries & a whiplash injury & have C-spine damage from those. My MD symptoms started w/in a month of my last head injury. I get regular cervical chiropractic adjustments which are a bandaid not a cure, but they do help w/ symptoms relief. Unfortunately, no neck adjustment has ever improved my tinnitus or hearing loss. I have no doubt there could be some connection between my MD onset & the head/neck injuries, but it took many years to come to fruition.
My cousin's wife did multiple prolotherapy rounds that included stem cells and PRP. She went to a local doctor in Austin that does the same thing as Caring Medical. It basically worked a miracle on her. She was spending 30% of her time sick in the bathroom from vertigo and had tried everything. Diets, chiropractors, physical therapy, seen multiple ENTs, neurologist, did oxygen therapy, nothing helped for long. She even had multiple doctors telling her to go on disability. She found the prolotherapy doctor and after maybe 5 rounds and eight months later she was 95% better. No vertigo attacks since March 2020 and she leads an active life now. She thinks the root cause of her problems was ligament laxity due to neck injuries from a car accident and falling off her horse when she was younger. Even her hearing came back after it had been diminished for two years.
That's remarkable, @Grapjuice! I honestly don't know of anyone who has gained healing from prolotherapy, but I know of many who emptied much of their savings accounts in hopes it would work (for other health challenges than MD). I have long felt that my Meniere's issues are somehow related to my neck because the left side of my neck always reacts when my tinnitus or ear pressure increase (left ear), but my ENT has only commented that they share some nerves in common. I've had whiplash & two cycling accidents w/ head injuries so my neck has sustained some similar damage as your cousin's wife's.
It would be helpful if she would send you a detailed description of her treatment that you could post on this thread. One of my doctors said prolotherapy can be dangerous when given so close to the brain (in C-1 and C-2) and there is a reviewer of Caring Medical who said his life was ruined by excessive prolotherapy. We would not want to try the treatments she had without detailed info, especially since it would be all out of pocket and considered somewhat experimental.
I am considering it in the future, if I go completely deaf. Right now I can function just fine, it's the progression of the disease I'm worried about. I thought I only had it in one ear because only my right ear has tinnitus and low frequency hearing loss but my MRI report said there's "equivocal left sided cochlear hydrops". Equivocal means uncertain, but I'm too scared to get another hearing test because I don't want to find out that it's gone bilateral. I'm thinking what life will be like being completely deaf, never being able to enjoy music again, not being able to talk to people, it'll be difficult to function, to hold down a job, and worst of all, being useless or even worse a burden. If I gets to that I might end it. I'm 42 and I've almost completed my bucket list. I don't have kids so I don't have responsibilities here. Only thing is I wouldn't know how to go about ending it. In America you have guns so it's easy but I live in the U.K., the only thing I can think of is contacting Dignitas and flying to Switzerland. But even organising all that might is going to be difficult when I'm deaf LOL.
My sister (not a Meniere's sufferer but had neck problems) went to several chiropractors and the adjustments were all temporary fixes, until she met one who told her that you have to do physical therapy alongside the adjustments or the adjustments won't hold. There must be a reason for the misalignment in the first place, either weak muscles or weak ligaments. She started doing Wall Angels and it finally solved her neck problems. I may be cynical but I suspect the other chiropractors didn't tell her that because they were making more money on repeat visits. So maybe incorporate some physiotherapy after your adjustments, like wall angels.
re suicide My father went blind in his older years and I would think that is a lot worse than deafness. My Meniere's has gone bilateral which of course is a big disappointment. I woke up one morning a few months ago and couldn't hear a thing! I couldn't even hear my own voice. However, this disease fluctuates so much that my only functioning ear got better in a few days and now it is working good enough. If I went deaf, I think I would stick around. I could still play chess and I think I could still play golf, but it would be different and a bit scarier. When I was deaf for a few days I checked out some tech, and there are apps on the iPhone that instantly convert speech to text so that is an option. Let's hope none of us have to make that decision.
[QUOTE="Grizzler, post: 93597, member: 8649" I'm thinking what life will be like being completely deaf, never being able to enjoy music again Hey Grizzler, Don’t give up my brother…
Brian, i have had very good progress from JOH regime. There were dark days in the beginning but im glad i stuck with JOH as everything is a whole lot more manageable now. Atick in there, you never know when this disease will go into remission.
"I'm thinking what life will be like being completely deaf, never being able to enjoy music again, not being able to talk to people, it'll be difficult to function, to hold down a job, and worst of all, being useless or even worse a burden." @Grizzler - I've thought about the going completely deaf issue, but not a lot. I figure if it happens, it'll be a good excuse to learn American Sign Language & for my family & friends to do so as well. We never get too old to learn something new (not a fan of "Old dogs can't learn new tricks."!!). In our current age of high tech there are many ways to communicate efficiently w/o hearing/speaking, not only that, why quit your job unless you're a telephone salesman (in which case it would be time to look for a new career)? I'm sure your brain would still work even if your hearing was compromised. People you work with would learn to adapt to your disability. Life is filled with challenges, trials, & tribulations, but we grow stronger as we face them & learn from them rather than folding up & letting them sink us. Be a boat riding the current, not a rock that sinks in it. You can do this!! You won't be a burden unless you allow yourself to become one.
"I may be cynical but I suspect the other chiropractors didn't tell her that because they were making more money on repeat visits." I totally agree, @Grizzler, but there are some good, reputable chiropractors out there. I've seen several over many years & most gave me PT exercises to do at home. That put the ball in my court to help my own recovery.
I listen to audio books on low volume for the first hour, it helps me to focus on something other than the quiet of the house and the ringing in my ears.
Cochlear implants are amazing. Don’t worry about your hearing. That can be restored. Many people on this forum that are bilateral deaf living very active and successful lives.