An Update on My Meniere’s Disease

September 9, 2017 Posted by Tyler Cruz

2.5 years ago (I can absolutely not believe it was that long ago already), I announced that I was diagnosed with Meniere’s disease.

Without hyperbole, this disease has completely destroyed my life. And to make matters worse, there is no cure, real treatment, or even support for this stupid disease. If you don’t know what Meniere’s is, I describe it in my post linked above, but it’s basically a series of symptoms, the main three of which are Tinnitus (ringing in the ears), general dizziness, and completely debilitating vertigo attacks.

I’ve gotten use to the Tinnitus after having it for 3 years without even a literal second of a break, and knowing that I will keep hearing it until the day I die. It’s the vertigo that I cannot stand (no pun intended). Despite not being painful at all, it is absolutely excruciating in every other way. It will come out of nowhere and I’ll have about a 1 second warning, possibly 2, before it occurs. My world will then start rotating at an unbelievable speed. Think of it like being on one of those playground carousels and having it go 70 km/h. Imagine it doing that but somehow also angling your entire vision on a 20 percent angle as well. Now imagine you wanting to get off, only for it to change directions and spin even faster. Just a minute in and you are now completely drenched in sweat from head to toe, shaking from the trauma, and throwing up uncontrollably.

For me, this is a vertigo attack, and while they do come and go seemingly randomly, there are certain triggers that will bring then on for me, including: certain foods such as caffeine (which I’ve avoided entirely for 3 years now) and salt, exercise, certain movements, and stress.

Where I’m At Now

On average, I’ve been getting vertigo attacks about once every 9 days or so, although sometimes I’ll get 3 in a day, and go for long periods without an attack. A couple of months ago I went for 2 months without a vertigo attack and it felt good as even though I had all the other symptoms, I was able to go out and do a lot of things I can’t normally do. But then my next attack was in a very public place and I had people all around me asking if they should call security and it was very embarrasing.

Badminton was one of my real passions and I used to go out and play 3-5 times a week. I haven’t played at all in a couple years now. I had tried going back a few times, but I would get an attack every time.

I also have trouble simply going out of the house. Walking the dog will spike my Tinnitus and make me dizzy for a couple of hours. And going shopping is very difficult as it leaves me very dizzy due to supermarket syndrome (yes, it’s a real thing!).

I also have a weird sleep thing that seems to occur close to vertigo attacks – I don’t know how to explain it other than it being a type of sleep paralysis; it will only occur when I am right about to fall asleep or just falling asleep, and often happens if I am very sleepy – it is extremely difficult to describe, but it’s like I’m falling into myself and I’m partially awake and my face starts to feel numb and paralyzed, and I have to force myself awake and do something for at least 5 minutes or it won’t go away.

Keeping Logs

I’ve been keeping a daily log ever since my very first vertigo attack, including writing down any notable things I’ve eaten, taking my blood pressure, measuring the frequency and severity of my Tinnitus and vertigo attacks, etc.

I’ve tried very hard to find trends and triggers, but unfortunately I still get attacks even when I’m watching what I consume (although there are some things which I avoid 100% since I know that they have an extremely high chance of triggering an attack):

Doctors Are Doing Nothing

Despite having this disease for close to 3 years now, my doctor here isn’t doing much. He doesn’t take it seriously despite it being completely life-changing to me.

After giving him many chances, I am finally going to find another doctor, but it may be very difficult as getting a new doctor here is virtually impossible.

That being said, he did refer me to various specialistswho all came up with nothing, including an ENT (who I waited 6 months to see and he gave me 5-minutes of his time), a cardiologist (who I thought was okay and was extremely surprised when he said nothing was serious) – I also had a CT scan, MRI, and various blood work done.

On my own, I even tried physiotherapy (which was too expensive at $75/hour to keep going to), anxiety councelling, and accupuncture!

There is a dizziness clinic a few hours away that I was referred to nearly 2 years ago and am still waiting for an appointment to be made.

A Daily Struggle

I am trying to move on with my life, but Meniere’s has definitely affected every aspect of my life including the ability to work. It’s a daily struggle most of the time. I can live with the Tinnitus – it sucks and was really hard to overcome (the first few months are the worst), but the dizziness and vertigo attacks need to stop. If you offered me the choice a billion dollars right now or to take my Meniere’s away, I’d choose the latter.

But, there’s no choice but to move on, so hopefully things will get better. You never know.

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Posted: September 9th, 2017 under Personal  

17 Responses to “An Update on My Meniere’s Disease”

  1. Henry says:

    Hey Tyler, Been following you since 2004! wow, time flies. Anyway, I had tinnitus just like you around the same time as well 2.5 years? An ent prescribed some crappy pills which caused me to have vertigo. I stopped taking the pills immediately. Traditional docs didn’t know anything – just measuring stuff like hearing frequency loss, blood tests showing minor fluctuations in liver or something, mri scans that showed nothing unusual, etc. The only thing that helped and CURED me of the ringing was by a master acupuncturist. Took about 2 months, but it worked. I suggest you try searching for a local doc who is well versed in TCM.

    • Tyler Cruz says:

      That is really odd that your doctor prescribed pills for Tinnitus. The only thing that is proven to somewhat help is TBT. I did actually try a couple accupuncture treatments from a guy trained in TCM, with some odd results…

      To be honest though, the Tinnitus is absolutely nothing compared to the vertigo attacks I get, and I have learned to live with my pulsatile Tinnitus.

  2. Walter Mosley says:

    I’m so sorry to hear that your quality of life has been so impacted by this illness. I’ve had a few health scares recently, and while nothing has been even close to what you’re describing in terms of daily life, it does really put things into perspective. Life is short, and it can change so fast and irreversibly. I’ve been trying to focus on making sure that my time here is well spent — that I can be proud of what I’ve accomplished in life, not just what I’ve accumulated.

    I’m not much of a prayer, but my thoughts are with you.

  3. Sujeet says:

    That’s terrible Tyler. I remember when you first mentioned getting it, but I had no idea it was this bad. I went through a phase of about 4 months where I was getting vertigo attacks out of nowhere, and then I went on a cruise, and when I came back they had gone away.

    Apparently my body readjusted it’s balance after being on a moving ship for a week, and I was magically cured. But before that, my ENT had suggested some sort of procedure to do much the same thing.

    In any event, I feel for you, and I hope you find other doctors that can help!

  4. Luke says:

    That really sucks Tyler. I hope you’re able to find a good doctor who can finally help you get it sorted out.

  5. Greg Harrington says:

    I love Dave Asprey’s blog for general health and unique approaches to hard-to-solve health problems. He mentions some approaches/ideas for Meniere’s here:

    https://blog.bulletproof.com/hans-struzyna-369/

  6. Daniel says:

    Sorry to hear.. I know you said exercise can trigger one. Have you tried doing light yoga? Such as a yin class? You said stress was one of your triggers. It’s helped me calm my nervous system, deal with stress, it’s kind of like meditation. Might be something to try, but you’ve probably thought of everything by now. Hope you find something that works.

  7. Dave says:

    Dana White, as you know, used to have Meniere’s disease.

    According to him, stem cell treatment in Germany cured him of the disease. Have you looked into this? I’m assuming that it’s expensive, but still..

  8. John says:

    Tyler,

    I had vertigo years ago with occasional recurrence. The Epley Maneuver worked for me.

    https://www.youtube.com/watch?v=9SLm76jQg3g

    If this helps you, I welcome donations; I need the money.

  9. Paul says:

    I have a different chronic disease that also has no cure. You need to get over the ‘doctors are doing nothing’ as there is really nothing that can be done. In my case the doctor was pushing drugs that actually don’t work and have lots of side effects. If you look in detail at clinical studies of some drugs (which I always do now) you will notice that some of them are only slightly better than placebo.

  10. Cyborg999 says:

    Hi Tyler,

    I know you’re suffering quite a bit with the chronic disease that you have and I do feel sorry. I know people don’t really “know” the pain and misery until they actually experience it.

    But just to let you know, there are many people who are in worse situation than you are as well… like me. 3 of my original organs are gone with 1 being replaced. I had a liver transplant close to 20 years ago, and I had my large intestine removed 5 years ago due to perforated bowel which is caused by a doctor during colonoscopy (I had Crohn’s disease, so I had to get it checked out once a year and never expected my doctor would do such a thing). I then went through 3 surgeries just to get the waste bag attached to my stomach out of my body so I can go back to normal human. 3 surgeries happened within <6 months and O was miserable during that period of time.

    Due to liver transplant, my doctors prescribed me prednisone (the anabolic steroids people drink to calm down inflammation) for close to 10 years when they should have stopped it after a year. Now due to the prednisone side effects, I'm suffering glaucoma, which I no longer have enough vision to drive. Not to mention the fact that this is a disease that will not get any better and all I can do is slower the degeneration process. I've lost significant part of my actual vision AND peripheral vision and it was one of the most depressing times of my life. On top of what I've been through, I also suffer pretty severe eczema. If you don't know what it is, it's a skin condition that is not contagious to others, but looks quite awful, dry, itchy and etc etc. I rarely go outside due to this reason and my 30+ years of life have been pretty miserable.

    So please know that while it is quite depressing to have a chronic disease, just know that there are many many people who are in worse situation than you and not really complaining.

    If it makes you feel any better, just know that there are people in way worse situation than you are, and you're fortunate to have everything you have now.

    • Tyler Cruz says:

      I’m sorry for your health issues, and I do understand that there are people in worse positions than me, but unfortunately shadenfreude doesn’t really help. “There are people in worse shape than you” just doesn’t fit unless it’s something really relatively minor. For example, I could say the same thing to you – I’m sure there are people in worse health condition than you right now – perhaps they are quadlapegic and homeless and blind in one eye and deaf… it doesn’t mean you are suffering any less.

      I do, however, realize that I should be grateful for what I do have: I can see and I’m not in any physical pain (although I’d almost argue that my vertigo attacks are a form of pain), so I can understand your point you’re trying to make.

  11. Xman S says:

    When u get sleep paralysis, do you see an old hag? Or something sinister?

    • Tyler Cruz says:

      It’s not technically sleep paralysis what I get, but it’s so hard to describe it I don’t know what else to call it… I think it may be anxiety related, but it’s odd how it almost always occurs when I am insanely tired…

PeerFly

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