Meniere’s Disease and The Death of Denial
Equilibrium failed me. The stable world I had always taken for granted deserted me, suddenly and without explanation. Am I sick? Did I eat something bad? All I had eaten for hours was a bag of Chex Mix.
“OK now open your text book to page 151…” I had no idea what we were learning, something about manipulating a database. I couldn’t bring the words into focus. As the world began to spin around me, vision doubling, I thought, “How am I going to get home?” There was still 30 minutes left in the class.
I started sweating through my shirt. I had been getting dizzy for months with no rhyme or reason. Not like this though. Never like this.
“What’s wrong with me?” The thought desperately echoed through my mind for the rest of the class. No answers came. The answers wouldn’t come until much later.
Later, as the world settled back into the stable reality I knew and loved, my 24 year old self shrugged the whole thing off. I was still invincible back then. I would have to stubbornly suffer for a while before any answers would come. And bit more after that as well.
Denial:
In the months that followed, my symptoms got worse. The dizziness would wax and wane but never go away. Slowly a clear pattern began to emerge. Clear at least to my girlfriend Megan. I was still stubbornly set in denial. Every time the dizziness passed I would dismiss it, convinced that whatever had caused it either went away or would reveal itself with time.
I kept telling myself that everything was fine. Every new day there was dizziness and a new denial. My ears felt like they were filled with fluid, but I didn’t have a cold. “Lower your voice!” became Megan’s anthem. I didn’t know I was yelling. I would soon learn that my hearing was affected, too.
Megan had been pressuring me to see a doctor for weeks. I guess I just wasn’t ready to let the problem become real yet. But everything was about to change. What happened next was undeniable.
It only took an instant to break me. After class one evening, I stopped and grabbed dinner from a nearby fast food restaurant, on my way over to Megan’s Apartment. We watched sitcom reruns as we ate our burgers and fries.
Suddenly, warning bells were sounding off in my head. Literally; my ears were ringing louder than I ever imagined possible as a sharp pressure started to ramp up. My stomach somersaulted as equilibrium swiftly dropped away. I fell to the couch and couldn’t get up. I couldn’t move as the intense nausea washed over me. Panic took hold as the room spun faster and faster. Megan sat and tried to comfort me, gently rubbing my hair. “It’s going to be OK, we’re going to get you help.” The shadowy shape of a problem that had followed me for months finally became solid as intense vertigo took over.
The world stopped spinning forty five traumatic minutes later. My armor of denial was destroyed, piled up in the corner. I collapsed on the bed. I had never known exhaustion so complete, my life force drained of all reserves. I promised Megan I would make a doctor’s appointment the next day and finally let the last bit of my waking consciousness fade to black.
The next day I got my Meniere’s disease diagnosis and was swallowed whole by an anxious abyss. My mind raced away from me in fragments; incurable, going deaf, change everything, helpless. It seemed so much worse than I ever could have anticipated and was delivered in the cold way you would imagine only a robot capable.
Acceptance:
Our capacity for denial can seem limitless, especially when our health is at stake. Denial is a natural defense mechanism and one that exists for a good reason. It’s there to protect you, to give you the time you need to adjust to painful or stressful issues. However, if you don’t process what you’re going through, there is a point where denial becomes an obstacle.
After my diagnosis, I was in shock. Stubborn to the bitter end, I attempted a last ditch effort of denial, hoping my Meniere’s symptoms would magically disappear. They got much worse. After a week I broke down. I felt shame, anxiety, fear, pain, and with a heavy heart, I faced the cold hard truth.
This was my first big turning point. I suddenly knew, with a newfound clarity, that I would not simply resign to my fate. I made a decision and promised myself to do anything it takes to find my way back to health.
Looking back on my journey, it’s clear that acceptance is the first step you must take on your path to health. I know how hard it is. It can be terrifying but there is so much hope. It may never go away completely, but you can regain control of your life. Meniere’s disease cannot and will not ever be bigger than your dreams. Bravely take that first step and never look back.
Janette
Please could you forward to me the short video of Glenn talking about the symptoms of his menieres attacks . I watched it but somehow cannot seem to find it to see again. Many thanks. Janette
David
Dana White of the UFC had menieres for years. He went to a private clinic in Germany to have stem cell treatment. Apparently within 3 days of treatment his menieres was gone. There are clips on youtube of people asking Dana for an update on his stem cell treatment about 3 years later and he says that his menieres is still completely gone.
When i look at the latest clinical trials on treatments for menieres i dont see any research on stem cell treatments. I have no idea why this is. Perhaps because stem cells cannot be patented and so there is no money to be made by the pharmaceutical companies?
If you google ‘Dana White menieres’ you will find information and youtube clips etc.
Glenn
Hi David, I actually know quite a bit about this. Dana underwent a procedure in Germany called Orthokine. (In the US it’s called Regenokine, though I don’t believe any facility will do it for Meniere’s) I know other Meniere’s sufferers who have also had the procedure as well, but were not cured. They improved somewhat, but it also wasn’t permanent. It seems to help the most when inflammatory markers are very high, and in Dana’s case, he was punched very hard in his affected ear, so it seems likely that his stemmed from physical injury. With the stem cell issue, I’m right there with you. I wish there was more research happening. It seems so promising. I know of some people who are trying to chase that route, though nothing has come of it so far.
David
Thanks for the reply. I got menieres out of the blue in August of this year (I had an infected tooth extracted about a week earlier so i do not know if there is a connection). I am 40 years old and otherwise healthy. It has definitely altered the course of my life. I am worried how it will progress and how it might effect my performance at work as there are times when i struggle.
Have you tried any of the following:
Pine bark extract? In this study after six months, a full 87 percent of the pine bark extract group experienced recovery – became asymptomatic:
http://www.greenmedinfo.com/blog/pine-bark-extract-treats-menieres-disease
‘Low level light therapy’ (LLLT or photobiomodulation)? A guy called Dr. Wilden claims to treat people with menieres and tinnitus using LLLT:
http://www.tinnituspatient.de/ukindex.htm
MICHAEL R. HAMBLIN, PhD is said to be a leading researcher in photobiomodulation:
http://www.dfhcc.harvard.edu/member-search/insider/member-detail/member/michael-r-hamblin-phd/
Pulsed electromagnetic fields:
https://www.drpawluk.com/health/pemf-therapy-and-psychiatric-and-neurological-conditions/
I have been using a PEMF and an LLLT device localised to the ears however just recently I have put treatment from these devices on hold due to experiencing some new unsettling sensations. On top of the unsteadiness etc certain sounds have become very jarring, like a feeling associated with nerves where the sensation is not really localised to any particular point but moves around the head. It is a sensation i have never experienced before so its hard to describe but feels very unpleasant. Do you know of these sensations? Over time the constant jarring effect on the nervous system is resulting in feelings of anxiety.
Michelle Wicks
I have a Depression Blog for anyone living with Chronic Illnesses. I hope you don’t mind me sharing your Testimonial Story to my Blog on Facebook. I have recently been diagnosed with Meniere’s Disease and I believe there are many other people too with this Chronic Illness and are unaware of it. Well thank you your story is very much appreciated.
Glenn
Hi Michelle, I don’t mind you sharing it, just make sure to include a link back to Mindovermenieres.com!
Michelle Wicks
Yes I will edit and include the details
Donna
Hi Michelle, would you mind adding the link here? I’d love to visit your blog.
I also suffer from depression (in remission with my meds, and wonerding if you’ve seen any research on ssri’s being a culprit of tinnitus) and was diagnosed with Ménière’s in August 2017. I am doing so well with the meds that I’m extremely hesitant to alter them. Thanks!
Dorothy Lee
I just found your site and it’s interesting reading. I was diagnosed with menieres in both ears at 16. I am now 69. And yes, I still have attacks. I had the labrinthology on one ear years ago as that ear did back flips. My good ear spins but I am so used to it that most people are unaware. I tend to lurch when stopping forward motion. Its difficult to move faster than a slightly faster walk.
My ENT was my lifeline. Since he retired every so called expert on menieres seems to have no real knowledge and actually made things worse. I suppose that after this many years, I have done it all. Most of the meds like antivert I was part of clinical testing … And none helped. I spent years salt free. Caffiene free. Junk food free. I clearly remember craving ONE potato chip and seriously regretting giving in.
Folks, it does get better. The last 7 years hAve been relatively free of attacks by my standards. Which means minor ones that knock me out for hours rather than days.
It interests me how the terminology chAnges. Throughout my life my doctor referred to levels of severity which is how I found this blog. I started as a level one which I remember much like the writer here describes.
Some when, I became a 2 which change signaled a progression from menieres syndrome to menieres disease.
I was considered a level 4 for many mamy years ..20 some and was told there were only 15 of us world wide. I also heard when each of the others gave up, no longer able to handle the disaster any longer.
No matter how bad it is ..TRUST ME!! You can handle and kick ass even with menieres. I have been so far beyond “normal” menieres, things that literally terrify me thinking I might have to handle them again, yet I did live through them and had a darn good life. God bless you all.
Jerry Perez
Dorothy Lee, i saw your post on mind over menieres you said “I spent years salt free. Caffiene free. Junk food free. I clearly remember craving ONE potato chip and seriously regretting giving in.” Im curious when you say “salt free”, does that mean that your diet consisted of 0 (Zero) salt?!?!? can the human body survive without salt? since my ent recommends eating no more than 1500mg of sodium. Im starting to wonder if that is too much? ive had classic MD for years, eventually lost my hearing in my right ear. So im trying to correct it with a diet before resorting to the endolymphatic sac decompression scheduled for Sept 20th 2018. Please tell me what your diet consists of morning,afternoon,dinner and is it your routine? ALso i come across veda wensite and some other sources that nuts and avocados and bananas are not good foods to have, have you run into this too?
My symptoms are 24hr 365 ringing in right ear. About an 8000 KHz tone,on my good days the ringing is less and dont have to ear an ear plug in my good ear as it gets overwhelmed by the sounds i hear. I love life and this disease will not BEAT ME DOWN!, i know that with diet it can get controlled but i need guidance.Help is very limited in my surrounding areas, Most Dr’s are ignorant of treatment and maintnenace. I know they are out there but most are out of the country or in far away places that are not within my reach. I find the best source of help is usually from the sufferers themselves and the journey they have traveled. Your feedback is greatly appreciated and anticipated. Thank you Dorothy for encouraging me.