I Have Been Diagnosed with Meniere’s Disease

February 3, 2015 Posted by Tyler Cruz

I apologize for the sheer lack of posting lately. I have been having medical issues.

In fact, I will have to keep this post fairly short because of this. It may also not be the most coherent, especially since it’s currently 2:29am as I can’t sleep due to anxiety.

A few days ago, on January 31st 2015, I was diagnosed with Meniere’s Disease. Wikipedia describes it as "a disorder of the inner ear that can affect hearing and balance to a varying degree. It is characterized by episodes of vertigo, low-pitched tinnitus, and hearing loss.".

Doesn’t sound so bad, right? Well, let me tell you that it’s a hell of a lot worse than it may sound. While everyone has varying degrees of illnesses and diseases, I can tell you that my personal experience with Meniere’s so far has been absolutely brutal. It has absolutely disrupted my life and made me extremely depressed and anxious on top of the actual disease’s symptoms.

I developed Tinnitus around 3 months ago, which at the time I thought was bad enough. I saw a regular physician who referred me to both an ENT and audiologist. The audiologist ran some tests and discovered that I have mild-to-moderate hearing loss in my left ear, and the ENT didn’t really add too much other than telling me to take care of my ears.

I was depressed about the Tinnitus but actually eventually got used to it for the most part – some days are worse than others with it, and it can really range for me.

Then, on January 21st 2015, I was sitting at the computer when all of a sudden everything started spinning really fast. I went from normal to the world feeling it was spinning incredibly past within a few seconds. I don’t want to dwell on it too much, but it basically felt like the world was spinning at a circular angle from left to right at like 50 KM/hour. It was so severe and such a horrible feeling that I had to immediately close my eyes, clench down on my chair and just wait it out.

I felt extremely panicked and actually cried out for help several times. Fortunately it only lasted about a minute, but I was dizzy afterwards for several hours. I didn’t know what the hell it was, but I basically wrote it off as being dehydrated.

Things continued normally for me (still with the Tinnitus though) until exactly one week later, when I had another episode. This time it happened while I was taking a hot bath to warm myself out from the cold Canadian winter. This time it lasted slightly longer and I again was in absolute agony and high stress while the attack happened. I feel so helpless when it occurs, and it’s absolutely terrifying.

Since both attacks occurred the day after I started playing badminton twice a day (I started playing badminton both in the morning and in the evening on Tuesdays and the attacks both happened on Wednesday), I thought that maybe the two things were related and again thought that dehydration may be the reason.

But then, only a few days later on Saturday, I had a 3rd attack. I was again at the computer, and the attack came on fast just as usual – within a few seconds. This was the worst attack yet and lasted probably around 2… maybe 3 minutes.

I’ve since learned that these attacks are called Vertigo – this isn’t what I thought Vertigo was. I thought Vertigo was more of a very mild feeling, usually due in relation to heights, but the attacks I experienced… were insane. Again, there is probably a large spectrum in terms of severity, but I couldn’t imagine my last attack to be any worse apart from lasting longer.

It was so severe that about halfway through it I started vomiting violently – only I had nothing to throw up as I had woke up not too much earlier. I continued "trying" to vomit until the attack ended, and by the end of it my throat was sore as a result.

Also, by the time the attack ended I was trembling very noticeably from sheer terror, shock, and agony. I also was sweating profusely… as if I had just run a marathon… it was actually amazing how much I had sweat within that short window.

Listen. I wouldn’t wish these attacks on my worst enemy. Not even Hitler, Osama, or Pol Pot. There’s just no reason for anyone to ever have to go through this.

I understand that there are probably worse diseases and situations to have out there, but I’d still say that this ranks pretty high up there… at least the Vertigo attacks. When they happen, I just want to die. I just clench down and beg for them to end. I couldn’t imagine them lasting longer than 2-3 minutes…

Anyhow, that very same day I went to see a doctor at a walk-in clinic and after a 3-hour wait, I was given 5-minutes with a doctor. She believed I had Meniere’s Disease, which is actually what I thought I may have, but didn’t say anything and she came up with it on her own.

I’ve been prescribed Serc which is a Betahistamine anti-vertigo drug. I’ve been on it for 2-3 days now and since taking it I have not had another Vertigo attack for which I am grateful for. However, and I am not sure whether this is due to the sudden onset of Meniere’s or the drug, since my last attack I have been feeling pretty crappy. I have a constant sense of being slightly dizzy, as well as a slight fogginess and blurred vision.

I’m not sure if the blurred vision is my actual vision requiring a new prescription or is due to the drug (or the disease), but it’s definitely an issue. I did have a ton of visual issues a year and a half ago, which ended up being fixed with a new prescription, but it just seems a bit odd that it’s so sudden and is happening at the same time I just started taking a prescription drug and with my Meniere attacks.

I should mention too that I am very likely to continue losing my hearing and eventually go completely deaf, at least in my one ear.

In the background of all this is my Tinnitus, but again that is so secondary to everything else that I could almost care less about it now. In some ways that’s almost a good thing because when I first got it (and realized that it was permanent with no cure), I was really depressed and anxious.

Anyhow, because of my constant dizziness and more recently my blurred vision, I haven’t been working. Yesterday I couldn’t even use my computer at all… within seconds of looking at the screen I would feel like puking. I’m lucky I’ve been able to use it as long as I have right now to write this post. I did decrease the resolution which seems to have helped a bit though.

In general, I feel so much better away from the computer, so… I dunno. Maybe I’ll have to give up working on the computer entirely and find a new occupation.

I just hope I get better. There are a lot of treatments available for Meniere’s, which all work to varying degrees, but I’m still early on the Serc trial so I have to give that 2 weeks before I consult with a doctor again. Internet research has taught me that a very low-sodium diet seems to help a lot too, so I am working on reducing my sodium as well. I think I need to get it to 500-1,000 MG a day, which is HARD.

The good news is that I actually changed my lifestyle in terms of diet and exercise 2 months ago and so have already been a lot healthier apart from this disease. In fact, I lost 20 pounds in the past 56 days.

I just came across Ed’s Meniere’s Videos as well which are awesome videos by a physician who has Meniere’s himself and has done a ton of research and tested everything to try to "cure" himself. I also subscribed to /r/Menieres on Reddit.

I’ll end this post by adding a few interesting tidbits from UFC President Dana White. He has Meniere’s too and underwent a surgery a couple years ago to try to cure it, but it didn’t end up working and he became deaf in his one ear as a result.

Here’s a quote from him right before he had the surgery:

“This thing is indescribable. People … can’t deal with it. It drops you. It puts you down. You can’t open your eyes for hours or sometimes days. You have to keep your eyes closed. Every time you open your eyes, you throw up.

“And it’s pain like you can’t imagine. You start sweating buckets of water. You can’t open your eyes. You curl up into a fetal position for hours or days. You just lay in bed and pray you fall asleep. You want the room as dark as you can get it.

“I’ve been traveling all over the world for 13 years. I’ve had the flu. I’ve had food poisoning. I’ve had just about everything you can have, and it doesn’t faze me. I just keep going. This thing puts you down.”

Good Lord, I couldn’t imagine dealing with an attack for a few hours let alone a few days. I’ve heard of some people having it for up to 2 weeks. I would beg to die long before that.

But, Dana describes it similar to me. It’s horrible…

Anyhow, a few months later Dana white underwent a very new and experimental treatment.

Here are some snippets from the article:

"Invented by Dr. Wehling, the procedure involves removing some of the patient’s own blood, incubating the blood at a slightly raised temperature and than running the blood through a centrifuge to isolate naturally occurring anti-inflammatory proteins, which are then injected back into the patient.

White underwent the treatment this past weekend, and he said the procedure essentially cured his condition…"

“I haven’t felt this good in two years,” White said. “I’m working out like a maniac. I’ve never felt better in my life.”

The UFC boss said he will undergo another treatment session in approximately three months, but he’s excited for the results thus far.

The UFC boss seemed in incredibly good spirits as he recounted the tale and is hopeful his days of dealing with Meniere’s are over.

“I told them, ‘I don’t give a s–t if I start growing a horn out of my head. If you can stop this, I’ll file the horn down,’” White said. “But according to them, there are absolutely no side effects whatsoever.”

That’s great, I thought at first, but Dana White is a billionaire. The treatment probably costs like $100,000-$1M. But, according to Wikipedia, Orthokine is "only" around $8,000. I may have to get it done in Germany since it’s not approved in the US (and if Dana went to Germany, then probably not Canada either). Hmm… so maybe $11,000~ for travel and expenses if that’s right, assuming no follow-up treatments or anything.

Hell, I may end up using the same doctor that Dana White used.

If so, that’s some positive news.

Heh, it also gives me some motivation to stop slacking like I have been lately, and really work HARD like I used to back in the day… simply because the more cash I have, the more treatments that are available to me.

The Wikipedia article continues:

Chris Renna, a preventive medicine specialist who has referred American patients to Wehling since 2003, said that "because of its expense and status, the treatment is for the 1 and 2 percent of our society."

I’m not sure if I fall into the 1 or 2 percent, but I’m hoping that this is an option for me and that I can afford it. While I do with everyone could afford the treatment, it does shed some reality on another reason why making money is important.

It’s not just for prestige and to live a very comfortable life – it’s also extremely useful for situations such as these.

Anyhow, I’ve been on the computer for a bit over an hour now and it’s nearly 4am. I’ve been lucky I’ve been able to last this long, although it has been a little bit of a struggle. I need to go back to sleep as sleep is apparently very important for Meniere’s, but I was getting very dizzy while trying to sleep so I’ll stay up a bit more until I’m basically too tired to notice the dizziness.

I don’t know when I’ll post again – it may be quite a while to be honest. I hope none of you ever have to go through this.

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Posted: February 3rd, 2015 under Income Properties, Personal  

81 Responses to “I Have Been Diagnosed with Meniere’s Disease”

  1. casey james says:

    Hey i just came across your story online and i have very symptoms with the same diagnosis. Ive been looking every where on how to find this dr in germany so i can fly there to get dana white shit but can not find it anywhere. Please help uf you know anything to point me in the right direction. Thanks buddy

  2. casey james says:

    Adter contacting the drs in germany that gave dana white the shot amd they will not treat anyone else for this. They said theres no proof it works and wont do it. I guess you have to be famous to be healthy

  3. Adter contacting the drs in germany that gave dana white the shot amd they will not treat anyone else for this. They said theres no proof it works and wont do it. I guess you have to be famous to be healthy

  4. Brian McMahon says:

    I recently paid 25,000 to have this procedure done in NYC. It did not work. It helped slightly but was definitely not worth the money.

    I hate to break this…I was SO hoping it would work like it did for Dana White. He had the shunt surgery prior to this – so I am thinking the two combined helped. He also probably continues to get the treatment every few months. That’s my bet.

    Hope this saves you money.

    Brian

  5. PiNa says:

    I am very sad about your hearing loss.

  6. How’s everything Tyler?

  7. Michael Alexander says:

    Hello,
    I was recently diagnosed with Meniere’s. I also just stumbled upon Dana White talking about his treatment in Germany. I’m curious to know if you followed up on looking into it or if you have found other way of managing it. My symptoms don’t seem quite as intense as your or Dana’s but they still haven’t been pleasant. I’ve really been a bit depressed by all of it since finding out and learning what to expect. Any insight would be appreciated.

    Thanks,
    Mike

  8. Domonique says:

    I have been diagnose with meniere’s disease recently by my doctor, about 2 years ago but have been experiencing it for over 10 yrs. My dizziness last for hours and in some cases a whole day. Lately it has been happening more often now and my hearing is suffering for it. I am sorry that you are experiencing this and I hope that you will eventually get better. Your doctor did give you a 1st step with the anti-vertigo pills but a low sodium diet does help a lot along with being hydrated at getting plenty of sleep. I am an active individual so I find that drinking the right amount of water for my body weight is usually best and if I go a little more than usual, it helps too. Take care and I hope everything works out for you.

PeerFly

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