Long Time - Don't Give In, Don't Give Up

Specific Illnesses & Conditions VM/MAV
1

It’s been quite a long time since I’ve been on the forum. I hope everyone is moving forward.

Just a quick word. I thought I was indestructable before this ailment hit me in 2005 just a few months before my 41st birthday. I thought I’d never have to take medication until I was 75-80 years old. I never felt like I was truly beaten by anything. When this ailment got a hold of me, I met my match. It’s difficult to properly articulate how insidious and nasty this ailment is to most people we come across every day. In short, you just can’t understand it unless you have it. This ailment took my career, and took my ability to function normally on a daily basis. It beat me up more than I could possibly ever imagine. For every step forward, I was met with two steps back. I thought about giving up more times than I can remember. Fortunately, after a long battle and seeing many doctors, I got lucky—yes lucky—to run across the right doctor (for me) in 2008. He, along with a great physical therapist, put me back together again.

Today, I haven’t missed a day of work in several years. I started swimming late last year and joined a local masters team a few months ago. I entered a 1/2 mile swimming race as part of a sprint triathlon relay in late July, and was 8th coming out of the water of over 200 participants. 2 weeks later, I entered a 1.2 mile swimming race in the Ohio River north of Louisville. I won the master’s category, and was 5th out of 56 total participants. In late August, I entered a 5K/3.1 mile swimming race in Michigan. I won the master’s category again, and was 9th out of 211 participants. That race was the equivalent of swimming about 54 football fields. It was tough, but I got through it and did better than I thought i would.

Although all of these races presented many challenges, none of this compares to what I experienced with this ailment. Not even close.

I am not 100%, but I’m thankful for what I’ve regained. I hope to beat this ailment into full remission just like I want to beat some of those darn teenagers who beat me on some the swimming competitions I described above. Symptoms flare up occasionally, but are never overwhelming. It’s something that I survived, and am now hoping to jettison and thrive after the daunting nightmare that is this disease.

Next year’s open water races start in May. Next year I’m aiming for two 5K’s, two 10K’s, and one 20K. I’m already training for them. If you would’ve told me that when I came down with this in 2005, I would not have believed you.

DO NOT GIVE UP!!! I thought I might be finished many, many times. I wasn’t. Keep moving forward. Never take no for an answer.

Best Wishes Always.

3 Likes
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Great post, and glad to see that you’re getting on with things. I just finished a 5k on Sunday and I feel and hope the end of MAV is near for me. I’m feeling a bit better now than I did a year ago. Definetley gonna keep battling this the best I can and keep moving forward. It’s tuff sometimes but you gotta keep on moving or it seems that you get no where with any type of recovery. I feel I’m heading in the same direction as you and I hope I can stay as strong as you and never give up. Thanks for the uplifting post!

Greg

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Thanks for your story MSDXD!

Are you on any meds? What was the winning formula for you? It sounds like your post should be in the Success Story thread. :smiley:

S

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This is incredibly encouraging and if I was to write a description of how MAV has slaughtered my life, it was read word for word as you have written.

I too thought I was indestructable, I pushed and pushed myself to the limit all the time, loving the feeling of not being beaten and watching those around me too scared to do anything with their own lives - as my mummy says - I’m a very wilful human being!

But MAV did a number on me that cannot be described unless, as you say, you’ve lived it. One of the primary things that has gotten me this close to being well is this forum - I think I’d still be in bed dying or having suicidal thoughts!

I’m happy for you my friend and you will beat these teenagers as they dont know what kind of determination they’re up against! Keep us posted with the swimming results - we love it!

:smiley:

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— Begin quote from “beatles909”

Great post, and glad to see that you’re getting on with things. I just finished a 5k on Sunday and I feel and hope the end of MAV is near for me. I’m feeling a bit better now than I did a year ago. Definetley gonna keep battling this the best I can and keep moving forward. It’s tuff sometimes but you gotta keep on moving or it seems that you get no where with any type of recovery. I feel I’m heading in the same direction as you and I hope I can stay as strong as you and never give up. Thanks for the uplifting post!

Greg

— End quote

That’s great, great news. One of the most difficult transitions for me was running again. That was a few years ago.

To be sure, I think this is a marathon. We have to stay on it, and not take for granted that this will just go away. It takes a lot of work—sometimes seemingly too much—to reach the goal. There have been times where I did eat the wrong thing, and the symptoms would flare up.

Keep moving forward!!. Good to hear how you’ve progressed!!!

6

— Begin quote from “scott”

Thanks for your story MSDXD!

Are you on any meds? What was the winning formula for you? It sounds like your post should be in the Success Story thread. :smiley:

S

— End quote

I’m a hybrid case. I’m MAV, Meniere’s, Palatal Myoclonus, & Cervicogenic Vertigo. The biggest culprit is MAV. No doubt.

For MAV, I take 240mg of verapamil daily. I’m also on a light dose of effexor (37.5mg).

For Meniere’s, light doses of valium here and there.

Diet…I think all of us know the migraine diet. I also have to watch my salt intake for Meniere’s. Before big training sessions, I have to be careful and read labels for what might effect me for both MAV and Meniere’s.

Cervical vertigo. Daily physical therapy. Lots of different exercises. We experimented with swimming beginning late last year, and it helps A LOT. It’s light resistance. I can’t do any upper body work in the weight room (bench pressing, etc.)…or anything with heavy weights at all.

Palatal myoclonus. Not much you can do about that. Valium might help a little.

Hang in there. MAV is a massive challenge, but it is treatable and we can get better. No doubt.

7

— Begin quote from “Muppo”

This is incredibly encouraging and if I was to write a description of how MAV has slaughtered my life, it was read word for word as you have written.

I too thought I was indestructable, I pushed and pushed myself to the limit all the time, loving the feeling of not being beaten and watching those around me too scared to do anything with their own lives - as my mummy says - I’m a very wilful human being!

But MAV did a number on me that cannot be described unless, as you say, you’ve lived it. One of the primary things that has gotten me this close to being well is this forum - I think I’d still be in bed dying or having suicidal thoughts!

I’m happy for you my friend and you will beat these teenagers as they dont know what kind of determination they’re up against! Keep us posted with the swimming results - we love it!

:smiley:

— End quote

Looks like you got hit with this in 2010. I remember when I was 1 year into it. It was 2006. I was on the edge. I was still having trouble getting around. I spent a lot time homebound. I was hoping for some sort of relief in any way, but wasn’t making a lot of progress. It took me until 2007 to get back in the part-time workforce, and it wasn’t until 2008 that I was able to work full-time…at a reduced capacity. Having said that, it was really a function of proper diagnosis and treatment. The difference between a “good” doctor and a “great” doctor with these types of ailments is very significant. These kind of forums get us a lot of information and help steer us in the right direction. It took me quite a while to get to the best docs, and from there, it’s kind of matter of trial and error with different medications and other treatments. Sounds like you’ve made better progress than I did in that regard. Certainly glad to hear that. Keep us posted on your progress!!

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MSDXD,
Where do you live, and what doctors did you see?
Your post is very encouraging. I think you should cut/paste to the success stories if you haven’t already done so. SO many people don’t…and it’s so important for newbies to see that things can get better.
Thanks for your posts!
Kelley

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— Begin quote from “rockyksmom”

MSDXD,
Where do you live, and what doctors did you see?
Your post is very encouraging. I think you should cut/paste to the success stories if you haven’t already done so. SO many people don’t…and it’s so important for newbies to see that things can get better.
Thanks for your posts!
Kelley

— End quote

I posted the success story a few years back. It’s in that thread somewhere.

I live in southwest Ohio. My doc is Dr. Vincent Ostrowski in Indianapolis at the Midwest Ear Institute (balanceinstituteindy.com/bal … staff.html). Both are consummate professionals.

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yep! You did post it, just reread it. My bad…it was a really insightful one at that. It’s good you stick around…I’m doing well too, most of the time, and need to post my own success story. I worry I’ll jinx it…lol…MAV makes me supersticious!
Kelley

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MSDXD –

What aspects of your illness makes you certain that you have MM as well as MAV? The two can be very hard to separate. I’m very curious to hear from people with both conditions.

Thanks … Scott 8)

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Thanks for this encouraging post! I did read your success story and Im so happy to hear how well you are doing and how far you have come. I love to read about people getting better, I know it happens, but like Kelly said it doesnt get posted often. Thanks again for updating us :slight_smile:
Rebecca

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— Begin quote from “scott”

MSDXD –

What aspects of your illness makes you certain that you have MM as well as MAV? The two can be very hard to separate. I’m very curious to hear from people with both conditions.

Thanks … Scott 8)

— End quote

MAV and MM are often mistaken for one another, and I think MM is misdiagnosed a lot more. It’s possible to have one, but not the other, and it’s possible to have both. Some doctors think there is a relationship between the two.

With me, my initial diagnosis was MM. However, I always knew there was more to it. After seeing multiple doctors, the puzzle was put together.

In 2007, the MAV diagnosis came up. After I was diagnosed, I actually experimented on myself. Chocolate didn’t bother me. Red wine beat me up…bad. Red grapes…same thing. Blue cheese…almost as bad as red wine and red grapes. Beer…ouch. Vodka…no symptoms. Tofu ----pain. All of this was accompanied by increased disequilibrium. Then, I cut out all of the foods that would be give me migraine…and the symptoms decreased.

With MM, it fluctuates. For me, the kicker was when I went through another round of tests in 2008. There isn’t a perfect test for MM. It’s really a process of exclusion. All of the tests are somewhat flawed, however, the ECOG might be the closest tool—besides audiometry----to determine an MM diagnosis. I came up positive in the right ear, and that’s where my problems are. Moreover, as far as symptoms, if I ate something high in salt, the symptoms would increase. Some docs disagree, but I think a salt-loaded ECOG test can help in diagnosing MM.