I Have Been Diagnosed with Meniere’s Disease
February 3, 2015 Posted by Tyler CruzI 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. I forgot to turn my Circadian Optics light therapy lamp at night to avoid those feelings.
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, luckily, I am taking Tinnitus 911 and I see a huge improvement in my health.
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.
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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, luckily, I am taking
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.
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 Learn more about my options. 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.
I’ll pray for you.
I smiled when I read how you tried to connect the symptoms to playing badminton – exactly the thing you do in your work: looking for patterns.
This is not the end of the world, and the life will continue. The wiki article mentions that that there are 2 clinics in US that do the procedure, the cost is not that high either: $7,400. I wish you all the best!
Long time reader, infrequent poster. That sucks to hear! Wish you the best.
Hi Tyler,
Wow, sad to hear about what you have been going through. My thoughts and prayers are with you.
Thanks for educating us, I had no idea what was involved.
Now I’m going to give you my “Dutch Uncle” advice, straight from the shoulder. $800 or $11,000 or so is a sum of money worthy of a lot of thought before spending. You know me, and you know I’m not rich .. especially since I just built a new house here in Bulacan. But if I were suffering like you have been, I would have already had the treatment … no questions asked. It’s only money, you’ll make more.
$8,000 would be a small price to pay in the grand scheme of life, my friend.
And you haven’t mentioned driving. I hope you aren’t driving until this gets resolved. Here in the Philippines public transpo is so cheap and available literally right at the door, but there in North America a car is virtually essential. And you’re young, you have a lot of years ahead of you where you need to be mobile.
Get the treatment so you can enjoy the rest of your life, guy. Life is to live, not something to suffer through.
Get well
Wow, so sorry to hear you’re going through this man. As I was reading I recalled the Dana White experience and the last procedure that seemed to have worked for him.
I can only hope you find relief sooner than later, and def look more into White’s procedure. Heck, try to get in touch with him somehow about it. He can put in a word!
Deron
Been reading your blog for a couple years now. Just wanted you to know my prayers are with you.
Best of luck in getting your symptoms under control, or better yet cured.
U might be sensitive to light, hence the problem when using the computer. Try reducing the brightness of your screen or use a software called f.lux to manage the LCD brightness.
Neck problems do cause dizziness. I’ve had a few sessions with a chinese chiro and it actually got rid of the constant dizziness. However, it didn’t get rid of my tinnitus.
So sorry to hear this news. Best of luck to you.
Hey Tyler, sorry to hear that you’re going through this. I had a similar but not quite as severe issue about 5 years ago, and the scariest thing was when it would hit me while driving. 🙁
Thankfully, mine went away after about 6 months, but I can certainly sympathize with what you’re going through. Good luck with whatever treatments you try, and please keep us updated of your progress!
Keeping you in prayer. I recently have been floored hearing I have a medical condition. You have encouraged me to continue what I have been doing conducting research on alternative solutions. One of my biggest challenges is decreasing sodium intake. Stay Blessed and thank you for sharing!
I suggest you look for bioresonance diagnostics first and foremost. The one that works with most efficiency is Imedis diagnostics. In Europe it costs less than $90 to get diagnosis by certified therapist. Current medicine cannot treat chronic diseases they just prescribe chemical drugs which have lot of side effects that are harmful in the long run.
Believe me bioresonance can find the real problem in your body. For example tinnitus may be caused by certain microparasites in humans body. Normal medicine is not looking into this, the aim is not to cure but to keep you taking drugs forever.
[…] speaking of health issues, fellow Internet entrepreneur Tyler Cruz has been formally diagnosed with Meniere’s Disease. It’s a “disease of the inner ear that can affect hearing and balance.” He says […]
Very sorry to hear this Tyler! my prayers are with you..
Ahh man, sorry to hear that man, at least you know what it is now, and a possible treatment.
Hope things work out for you.
That is very unfourtunate. Hope you get well soon, bro.
Man, that sucks. Hope you get well soon. The IM world will suck more without you.
Just to let you know that I wish you the best with the treatment, hope you get well soon!
All the best! Hoping things work out for you!
Hey man, that sucks big time. I’m a fan of your blog so I’m sad to see you go away due to this disease. I hope you do get that treatment in Germany and get it cured asap. Remember health is more important than money, so good luck!
Sorry to hear that man. Praying for you man. Jesus is a healer even when the doctors can’t.
Wow man heartbreak moments. I will pray for you god is watching us all he will do what the good for us.
Till be yourself
everything in this world is impure these days..may be after 10 years there will be no human:/ because of no humanity..
It’s very unfourtunate Tyler. Hope things work out for you and you get well soon.
Where’s the November update?
So sorry to hear that. Get well soon
oh ! holly shit take care and get well soon ! health is wealth
Regards,
Issac Paul
Oh crap! Get well soon buddy, best wishes with you.
Sad to hear about this.
My prayers are with you.
Get well soon.
GWS!! Very sad to hear about your hearing problem.I will pray to God about your well being.
I feel for you. Rest assured, you are in my prayers. If I could offer you some positive thoughts, I thought I had something like this years ago, when I was in college. I had it treated by a doctor, and have not had the problem since. Keep a good thought, my friend. After writing this, I am going to say a prayer for you before I strike another key on my computer.
Its very bad to hear this. YuppppGet well soon!!!
Hey Tyler,
Are you still suffering fom that disease ?
I am praying to god for you tryler ! For heaven sake get well soon. Praise the lord in the name of jesus and by the blood of jesus. May god touch and cure you’re disease
Amen.
feeling bad for ,dude you have nice writing tendency.. take some time I will pray for you dude…
soon you will get out from it..
My friend suffers from vertigo. My grandmother also. I can’t relate personally but it sounds like hell.
I havent been on your website for a while now…I didnt know about your new health challenge. I can only wish you the best and your health improving situation. Keep us update.
Check out this forum.. http://www.menieres.org/talk/
There are a lot of things you can try which may help. Good luck man!
Today I was Stumbled on your blog continously reading the post and its sad to hear ,May God Bless You With Good Health and Hope the Best articles from you
Get Well Soon
Take care of yourself buddy
It’s very sad you have this. Even I have a worse disease which has no cure. But still, that’s on how life goes. We have to move on
if you are still suffering from disease then i will pray for you .get well soon
get well soon g
i Wish no one faces this kind of problem.
and Wishing EveryOne there with gud Health
All pray for GOD to get well soon
All is Well Now.
🙂
🙂 Gud people Will will be saved by God.
Thank God.
You are earning good income. I get inspired from this
Tyler there are many good Menieres Support Groups where you can find information from people who have been battling Menieres for years. We also have a petition to promote Menieres Awareness:
https://www.change.org/p/bono-and-u2-meniere-s-disease-raise-awareness?recruiter=246737086&utm_source=share_petition&utm_medium=facebook&utm_campaign=share_facebook_responsive&utm_term=des-md-no_src-custom_msg
Be well
Tyler Here is a Meniere’s Survival Kit I put together ~ Important Information for the Newly Diagnosed
The Best Meniere’s Book that Covers Everything you need to Know:
http://www.goodreads.com/book/show/11317610-meniere-man-let-s-get-better
Informational websites and links:
Dr. Timothy Hain
http://www.dizziness-and-balance.com/disorders/menieres/men_eti.html
Vestibular Disorders Association:
https://vestibular.org/understanding-vestibular-disorder
8 MD Videos by Doctor Ed Cheung a Menieres Sufferer that cover:
https://www.youtube.com/watch?v=youQhkZeZuY
1: My personal Meniere’s Disease
2: What is Menier’s Disease
3: Symptoms
4: Diagnosis
5: Life Style Modifications
5.5: Tips to try now
6: Medications
7: Procedures or Surgeries
8: Alternative Treatments
Be well!
I’ve watched Ed’s videos – love em. Hope he makes more… maybe updates on Meniere’s news…
So sorry to hear this news.GET WELL SOON BRO.
Tyler,
Hi hope you’re feeling a bit better!
Here is the email for Regenokine in Dusseldorf Germany
Patient Contact:
Amelie Bendig at Clinic Wehling – Hartmann
I’ve had the treatment if you have any questions. Contact me thru FB
Be well
Dear Judy,
i have Menieres disease since January 2014, but i have a off label therapy with Betahistine, taking 3 times a day 72 mg. So far, there were no serious side effects and no more vertigo attacks since my doctor increased the dosis to the actual level. Even here this level is under discussion, but there are no serious side effects known beside possible diarrhoea at the beginning. I have seen Dana White talking about his treatment and i thought it might be worth a try. I want to get down from the high level of Betahistine, and i still feel the disease by all other effects beside vertigo.
If you dont mind, i like to ask you about your experience with Regenokine,
or Orthokine, as we say in Germany. Im not on FB, sorry.
Best regards
Bert Braune (bert.braune@t-online.de)
Hi Judy,
I’m curious to know if the treatment you received in Germany was successful and, if so, how long it took for you to see results? I was diagnosed about a month ago and am looking into all treatment options.
Email didn’t print :
clinic@wehling-hartmann.de
Dear Tyler,
no one who has not that disease knows what we are going through. I can only you encourage not to let the disease govern your life. Since i take Betahistine at high level (minimum 3 x 48 g/ day), i got rid of my vertigo attacks and my hearing is till not so bad, even my ear was strongly roaring at the beginning and i developed vertigo within a week or two. It means, my disease did fast progress. After 1 month, i had i once a week for 3 hours, and walked to the toilet on 4 legs to vomit. But since last march after i was ordered to take high doses of Betahistine, i restarted work, but must have a relaxation or rest after 2 hours in order not to overstress. I have my own company and has severe Loud noise is a problem, and sleeping by laying flat on the bed is also a problem. But, at least no more vertigo because of the therapy. My attacks were announcing always 10 to 15 minutes before, so i had always time to get me a comfortable seat or something like that. We have also a self-aid group here in Germany (www.kimm-ev.de, sorry its only in german), organizing 2x / year a workshop with doctors who do research in that area.
Please talk with your doctors about high dosis of Betahistine, im not sure but my hearing is still not so bad, of course changing frequently. Maybe a side effect. At least, im not a medical expert, and you must clearify with your doctors. I did even a long time flight to a conference i Taiwan 3 weeks ago, with not too much troube beside
I wish you all the best and let me encourage you. Feelings as you described are normal for us, especially in the early stage. But you will get
Hi Bert,
Thanks for the comment – I took Betahistine (Serc) as the first drug. The side effects of it were very extreme on me, basically magnifying the symptoms by like 5x, so it definitely did not help. Nor did hydrochlorothiazide.
I have a brain MRI scheduled for a couple of weeks from now just in case it could be something different from Meniere’s (or in addition to), as anything slightly strenuous gets my heart racing.
Dear Tyler,
im sorry to hear the Betahistine had such effects on you. I know some people dont respond to it, but i didnt hear much about aggravating the effects.
Anyway, its good to have a MRT scan to exclude other causes like a tumor close to the inner ear. I learned most of the affected dont have any serious issue revealed by MRT or other methods. I had 3 MRT scans and twice a digitale volume tomography. There was no deviation detected. The problem with heartbeat racing may be caused by the sudden impact of the symptoms that crash into your life, and are somehow out of control. I was in a panic like state for months before i got calmer again, my blood pressure went easily through the roof that time. I think its a normal reaction to this disease when you are “fresh” in the business. I do relaxation exercises every day, and Tai Chi since 30 years, which has a positive effect on the symptoms. You should look for other people who suffer from Menieres in your area, that you can call if you encounter some change or unexpected effects. Meniere is changing from day to day and month to month, you may have phases with no effects, thats possible too. Some people get cured over time without knowing the reason, or at least they dont have symptoms for a very long timespan of years, sometimes decades. You are in the examination phase and looking for the root cause, thats ok, but make notes for yourself what helps you reducing the effects.
Wish your condition will improve soon and try to relax, even if its not easy.
Best regards
Bert
Yeah, I actually keep a diary in regards to my Meniere’s. I don’t keep it quite as up to date as I probably could, but I do note any major changes/effects.
My Tinnitus is pulsatile Tinnitus and I did have a mitral valve prolapse when I was a teen so I wonder if that is somehow part of the cause…
Sorry Tyler, hit the send button 🙂
you will get used to your disease,and there will be better times again.
Ask me anytime if you have questions, see my email on the reply to Judy McNamaras post.
I wish you can relax a bit and that your condition will improve!
Bert Braune
I’ve been diagnosed with Meniere’s recently and have been doing a lot of research into the Regentokine treatment. There is a place in NYC that is the only place that offers it for Meniere’s. The clinic in Germany, and the others in LA, Dallas, etc. will only treat ortho patients. (At least that’s what they told me.) If you want more info on the NYC clinic and details on cost, treatment, etc. send me an email.
I too have Meniere’s Disease. It has derailed my life. I am interested in the office you mention in NYC.
I have similar symptoms. The insomnia, the racing heart,dizziness and vertigo while in bed. Stiff neck and pain at the bottom of skull.Please let me know how you are doing. I heard that Regenokine in the US is similar to Orthokine treatment. Quite a few docs do it here in the uS.
The tinnitus might be the elevated heart rate.I had it very bad at first, but I could not call it tinnitus, I called it inner tremors.At first I only slept every 3 days. Have you tried cranio sacral therapy?
My T is 24/7 though, and my heart rate is normal, even during exercise.
Hi, Tyler
Did you end up going to Germany? I have meniere’s as well. I did the surgery that actually made me worse. I was stuck in a chair for 5 months couldn’t move without getting dizzy. It was horrible. I can’t take betahistine either. I went to Germany and it changed my life.
I have not gone to Germany.
Which surgery made you worse? The cutting of the nerves to the ear?
I was under the impression that you needed a referral by an “inner” person in order to be accepted to the German doctor…
Hi Brandi,
It sounds like the treatment you received in Germany was successful — is that true? If so, how long did it take for you to see results? I was diagnosed about a month ago and am looking into all treatment options. Would you be willing to discuss your experience with me?
Hey Tyler, I know what you’re going through as well. I have suffered with Meniere’s for the past 12 years. Each year the attacks became more frequent. In May 2014 I had SAC decompression surgery. It didn’t help. In January 2015 the attacks increase to 3 or 4 each day. That’s when I decided to go for the ultimate surgery, VNS (vestibular nerve section). My surgery was March of this year, 2015. It’s been almost 6 months now and I haven’t had any attacks. But, like Brandie indicated, recovery from VNS surgery takes a while. Well, I think that’s the surgery Brandie went through, It sure sounds like it.
I’m still not 100%, but I can drive for short trips, but mostly, I’m most comfortable watching TV or working at my PC. I was told recovery could take up to a year.
Just wanted to share and would hope anybody else that suffered with this disease could do the same. It helps late at night when you can’t sleep wondering, what am I going to do next.
Good luck Tyler
I’m glad to hear you haven’t had any attacks in 6 months! My last attack was Sept. 4th (very minor) and before that August 28th. So, I’ve been lucky that I’ve had a bit of a break from them, but I still struggle with general dizziness and somatic pulsatile tinnitus which makes it so hard to focus on anything. Still waiting to see my ENT which is scheduled for November 20th, 2015.
Tyler,
Lots of rest, try to avoid stressful situation and a low sodium diet is a good place to start.
I remain hopeful because I’m still in recovery from surgery. However, I still feel the fogginess in my head which makes it difficult to concentrate and my balance most of the time isn’t any better than it was before the surgery, in fact its worst. My hearing in my right ear is gone, even though the VNS surgery is supposed to save what hearing you had prior to surgery. I remain optimistic and can’t wait to get back on the golf course with friends and have a few beers again.
Make sure your doctor is an ENT/Neurotologists. This may save you some time getting a diagnoses. And, have you seen the latest news. I haven’t read the article yet but it may be good news for Meniere’s Disease suffers. http://www.marketwatch.com/story/otonomy-announces-successful-end-of-phase-2-meeting-with-the-fda-for-oto-104-in-menieres-disease-2015-09-09?mod=mw_share_facebook
Good luck Tyler, and please keep us posted. Information is power!
Did your surgery affect your T at all? I’m guessing no since it’s really the brain that is creating it…
Regarding the ENT, I have no choice here. There is no private health care here and so I can only go to whatever my GP refers me to.
Cool news regarding Otonomy, more for the fact that at least some companies are looking into a solution for this horrible disease…
Hi Tyler,
I too was diagnosed with Menieres almost 4 years ago in both ears. My right ear is the worst one & I am told now no hearing aids will work at this point. My left ear is staying astable with just mild hearing loss. The beginning was awful. I was amazed I could be so sick & not be dying! I had the full blown vertigo attacks which lasted anywhere from 4 to 6 hours, tinnitus I never knew could be so loud, then complete exhaustion after & would need to sleep for a couple days after. After almost 4 years now I have been feeling so much better, so just try to believe that better days will come. I believe mine was helped by allergy injections and would recommend getting tested to anyone with menieres. I knew I always had allergies, but was shocked to find out my allergy was not what I thought I was allergic to & how bad it actually was. I noticed a difference in the tinnitus & the vertigo practically stopped within 5 months of starting the shots. Please take the time to get tested!! Anything that could be a possible trigger is worth looking into until a cure is found for this life changing thing we have!
Take care,
Rob
What was the precedure like for testing for allergies?