Greetings from Houston, Texas

Hello, everyone:

I stumbled across this forum today while looking for information. I have been diagnosed with Meniere's, it is coming up on two years now since I had my first episode.

In all, I've had 3 severe episodes during which I am completely incapacitated - sweating profusely, with insanely intense vertigo lasting for several hours, coupled with a heightened sense of anxiety bordering on panic, and towards the end of which I am violently and colorfully ill - barfing up everything I've eaten for the last few days. Then I sleep for 6-8 hours, and it takes the next 2-3 weeks to get back on my feet and feel like I am able to walk and talk "normally".

In my case, the symptoms have returned within a week of the main attack, but they will be less violent and last only a few hours.

In between severe episodes, I will have minor episodes where I am just wobbly and unstable on my feet, unable to think clearly and generally disagreeable to just about anything. These have been coming randomly over the last two years, maybe 4 or 5 times.

This last week, I had a new type of episode - not severe, but also not minor. I was having a feeling very much like the intense vertigo, but it was coming and going for 30 minutes at a time over the course of three days. And, I did not get violently ill - only because there was not much in me at the time, I believe. Anyways - this episode appears now to have subsided - and I am back to feeling sort of queasy and unsteady on my feet.

I am a computer systems analyst by day, and a steel guitarist by night and weekends. Both of these careers have been completely derailed, although I am still able to perform most of my duties - my effectiveness and productivity is way down.

SO - I am looking for any guidance and help that may be available.

While I have the best medical care on the planet available to me here in Houston - so far the best they can come up with is a diuretic and some dietary suggestions. I did take a one-week course of steroids which seemed to work wonders to me, at least for several weeks - then the fullness in the ear and the ringing came back with a vengeance. The ENT will not give me another dose, instead he says we have to try to "manage" the symptoms with diet and life-style changes.

Is this consistent with your experience? I am thinking there must be a more pro-active way to combat this?

Thanks for your ideas, comments, suggestions, and support!!!

JMC

 

Welcome, iamsteeler. You have found a site that will offer you much advice and solace. I can tell you that my symptoms were similar to yours a year ago when I came upon this site. I tried all treatments short of surgery and for me, the John of Ohio vitamin regimen has been a God send. I began taking it in Dec 08 and except for the tinnitus I have been symptom free since March 2009. It can take months to become effective, but it is well worth the patience. I had been on an extremely low sodium diet but since taking the vitamins I can eat whatever I want.

I wish you the best in your search for some relief from this beast, but I highly recommend beginning the JOH vitamins immediately. You can find it at the link below:
http://www.menieresfoundation.org/johnsregimen.htm

 

Welcome fellow guitarist! I play every guitar but steel, I've just never had one put in my lap before.
You've come to the right place for help. Your symptoms are exactly like mine WERE 5 years ago. Did you notice that a said WERE. I have been on the John of Ohio regimen since Oct. of 2008 and have been vertigo free ever since.
After my diagnosis, which took three years, the neurotologist told me to "manage" my symptoms, diet, blah, blah. Well. that wasn't a good enough answer so I ramped up my use of this website and jumped onto the JOH bandwagon. I take my supplements religiously without exception because I NEVER want to go down the vertigo road again. I can live with the ringing and hearing loss(which is only about 20% so far). At least I can live normally and work and play! For a while there I thought I was finished.

By all means steeler, go online, order your quantities (I order twice a year form websites) and hope for the best. John is up front about how it doesn't work for everybody. But what have you got to lose? Read the instructions carefully, it helps to know what each supplement does. What sold me was the viral connection to the attacks.

I wrote down everything I needed and keep a simple log. Once you get the routine down it's as easy as putting your shoes on.

Cheers, endo

 

The posting at http://www.menieresfoundation.org/johnsregimen.htm is way out of date (2005).

The newest posting, with new information and sources, is at:
http://www.menieresresources.org/Resources/HomePage?action=download&upname=ANewApproachtoMenieresDisease-TheJohnofOhioRegimen.pdf

I few have had trouble opening this PDF, as I forgot to embed the font in it. That's been corrected, but the host site may not have yet put up the revised, font-embedded PDF. That should happen so, I think.

--John of Ohio

 

Hi All:

I have ordered the first supplement this week - and I expect to add them into my daily routine one at a time as suggested...

Will post my results - and Happy New Year to all...!

 

I, too, am on the John of Ohio regimen, somtimes called JOH on this board. When I first started here it took me a while to realize what was being talked about. I haven't been on it long enough to say it's a success (only since October and I fell off the wagon, setting me back a few weeks). But I can say that being on it religiously the entire month of December has helped a lot and I expect progress to continue as the different supplements, vitamins and herbs build up in my system. At the same time I have a perscription for 2MG of Valium, to be taken as needed. On really bad days (either ones with full vertigo or the other suckwad "offish" days or really stressful days) the Valium really helps. It's not enough to make me unable to function, in fact, it no longer makes me sleepy at all. Maybe something to ask your doc about. Mine was very supportive of the JOH regimen and didn't bat an eye when I asked for the Valium. Best of luck to you.

 

...John's regimine has worked for many and I wish you all the success with it. Personally I found that my attacks came right after I had eaten or when I hadn't eaten in a long time. It turned out to be a food allergy to wheat and oats and hypoglycemia. I eliminated gluten(wheat and oats) from my diet and went on a diet based on the glycemic index and have not had an attack in 7 years.

...There are also many on this board who have gotten relief from Antiviral medications. That's another option you may want to pursue.

...Remember when making any dietary changes to do so under your doctor's supervision.

Rick

 

JOH helps a lot of people. I've been trying components of it, but have backed off until I get my food sensitivities under control.

But what you describe might well be food sensitivities/type 3 delayed-onset food allergy. Your symptoms sound very much like mine, especially the part about it taking a couple of weeks to get back to normal. In fact, of all the symptoms folks have described in the few months I've been on the forum, your symptoms are the closest to what I've experienced. You might try a gluten/milk free diet for a couple of weeks.

I'm 54 years old and never had ANY kind of allergy in my life, but started getting the symptoms a couple of years ago. It started with the occasional vertigo, but for a year I was much more tired than I should have been, to the point where I was taking daily afternoon naps. Then it kept getting worse until there were days I could barely get out of bed.

I "accidentally" discovered a wheat intolerance because lots of folks her on the forums are wheat free. I KNEW that wheat wasn't my problem, but I was so desperate for relief that I tried it. I was f'ing amazed when, a week after eliminating wheat, I started feeling like my old self. The brain fog disappeared, the exhaustion disappeared, and the tinnitus and dizziness cut way back. I'm not back to 100% yet because I'm sensitive to a lot of different foods, but I'm working with an allergist on a diet and am feeling much better.

A type 1 allergy is the kind where you get hay fever or you swell up and possibly get anaphylactic shock. The type 1 symptoms usually happen pretty soon after you eat a trigger food.

A type 3 reaction is when you eat the food, but the bad effects don't start until later, anywhere from a few hours to a couple of days later. Then it take as long as two weeks to recover from the attack. So it's hard to connect the attack with the food. And since you don't connect the attack with the food, you keep eating it and keep getting sick. There are a number of us on here with food sensitivities. Like you, I'm a computer programmer, and the brain fog has made it very difficult to do my job. I also missed over thirty days of work last year until I discovered my problem.

One quick test you can try: drink a few ounces of water with two tablespoons of bicarbonate of soda (baking soda). It tastes like crap, but if you have the same problem that I do, it may ease your symptoms. If you can find Alka-Seltzer Gold (which has no asprin), try that since it has things to make it taste a bit better, but it was impossible to find where I live. I ended up getting some from Amazon.com.

Check out these threads:
http://www.menieres.org/forum/index.php/topic,23869.0.html
http://www.menieres.org/forum/index.php/topic,23687.0.html

Whatever you find your problem to be, I hope you get some relief soon.
PapaJoe

 

Hi PapaJoe:

Very interesting response, thanks! My wife did some research and suggested I cut out wheat/gluten all together after my 2nd major attack in Nov. of 2008 - of course, I did not listen to her.

I do not drink milk at all, but I love to eat bread and pasta - have done my whole life. I will be 54 tomorrow, and like you, I have never had an allergy or adverse reaction to anything in those 53+ years. I only started to have the MM symptoms in late 2007, with the first full-blown attack occurring in March, 2008. These days I am so tired I have trouble getting started at almost anything. I've had to give up playing steel guitar gigs to try to get some better quality sleep in on my weekends, but this has not helped it much - I am still constantly tired.

I did join the local SnapFit in November, and have been trying to get a 3x weekly weight regimen in. I haven't been able to stay consistent with this yet.

I will be following up on the wheat/gluten angle and will definitely post any significant results.

Rgds,
JMC

 

Hope it helps, just be aware that if you eat prepared or packaged foods, you're probably eating plenty of wheat and milk which are used in almost all processed foods. BTW - My favorite food was a fresh baked loaf of bread and a stick of butter.

Good Luck!

 

BTW - even though I think food intolerance is my biggest problem, I still hang out here because this is the best on-line forum I've ever seen. The folks here are awesome!

 

Welcome imasteeler! The JOH regimen helps a lot of us here. I take part of the supplements and feel much better, ESPECIALLY once I quit the diuretic and low salt diet. Allergies and stress are big triggers for quite a few. What works for one doesn't necessarily work for another...Do lots of research and come by often; you will learn a ton. Valium was a life saver for me in a very low dose. It seems to suppress my vestibular system and stop an attack dead. There are also several surgical solutions and many can give you detailed results. VK

 

Welcome to the board,

The one common demonanator I share with you is my attacks were spaced out like yours. I would follow the exact same pattern everytime. Get that "flu like" feeling coming on. Real hot and sweaty, throw up, boom welcome vertigo. Mine would last anywhere from 2-4 hours on most occasions. I would have to sleep for about the next 10-12 hours. And it would take a day or two to get back some normalcy. Yes indeed, good times. I think the others have pretty much given the best advice. Even though you've had MM for a couple of years, given how your attacks are spaced out, you have a nice chance to try some different things. For me personally (not at all saying this is the right approach, but what I know now, this is the direction I would go if I was at your stage) I would do:

1) diuretic/salt reduction if no relief
2) antiviral if no relief
3) John/Ohio


I'm generally not in favor of presciption meds, but would go with them first only because you might be able to tell within just a couple of weeks if they are having the desired effect. There are some other great things to try like the gluten restriction and possible allergies. But I would try one thing at a time, if it doesn't work move to the next. Best of luck.

 

Going on two full days now without bread or wheat of any kind, and I find myself craving a toasted cheese sandwich with an entirely new level of intensity! One of my all-time favorite things to eat is fresh tomatoes out of the garden sliced onto a toasted slice of fresh sourdough bread, topped with a slice of sharp Vermont cheddar....!!! Good thing the tomatoes are long gone for the season, otherwise I would likely succumb to the temptation....

But so far so good....

 

Two days is a good start. My allergist says that what you crave the most is often the foods that gives you the problem.
Apparently, wheat and milk, when digested, produce a morphine-line substance, exhorphins, so that when you stop eating wheat, you actually get withdrawals.

http://stanford.wellsphere.com/heart-health-article/hey-buddy-wanna-buy-some-exorphins/693472

A quote from the web site:

http://www.glutensolutions.com/autism.htm

I went out to eat last night, the first time since I started my diet. We went to an oriental restaurant since sushi is the only think I dare eat yet. My wife and friends ordered Thai. It took every bit of will power to keep from eating from their plates.

 

imasteeler quote <In all, I've had 3 severe episodes during which I am completely incapacitated - sweating profusely, with insanely intense vertigo lasting for several hours, coupled with a heightened sense of anxiety bordering on panic, and towards the end of which I am violently and colorfully ill - barfing up everything I've eaten for the last few days. Then I sleep for 6-8 hours, and it takes the next 2-3 weeks to get back on my feet and feel like I am able to walk and talk "normally".>>


Dang, that sounds so familiar. Not much consolation to you, though, that someone else was just as miserable. I've been the Hexamethasone pill treatment, the dex injection in the ear bit, and the prednisone treatment. Nothing permanent in any of them although they helped a short while.

Presently on the JOH since October 4 and am keeping a log of blood sugar (i'm diabetic), meals and whether I have an attack and its intensity. I've gone from attacks 9 out of ten days to about one out of four in three months. Can't swear that it's the JOH, but nothing else has changed.

Listen to my pal Papajoe, too. he has done some great research and has some interesting ideas. He's also fun to exchange messages with.

 

Hello, some of your symptoms sound like mine. The last bad episode I had was last week. I have had 3 in the last few weeks. I am new to this as well and feels like I am never going to get better. Everyone is suggesting the JOH treatment. I am going to look into it myself as it seems that everyone on here that has taken it is doing well. Hang in there!!

 

Going on 4 days now, no wheat of any kind. Also going just about crazy for a toasted cheese sandwich, a slice of pizza, a bagel, or even some crackers! But holding fast for now.

Got my lemon pills yesterday as well - they are quite large...!

Perhaps what I am experiencing is a purely emotional boost in optimism brought about by having started on these new initiatives, but:

... I feel better today than I have done in many weeks
... My tinnitus is less than usual today
... The whooshing sound has been reduced
... and I can hear a little better out of the affected ear (again measured by non-scientific measures)

Realizing it is way too early to declare any sort of definitive result or lasting change, I am nonetheless quite enthusiastic about the way things are going just now...!

Will continue to post any updates when and as they occur.

 

Cool! Thanks for the update

 

antivirals and allergy treatment. Go to LA and see Dr Derebery at House. She's helped a number of people. I go from Pgh.