:wave:

Hi All:

I am really not on to much. I do come on once in a while and read the posts. I just wanted to add a positive post as I know how much they help us while in the middle of the battle. I have been pretty much 100% since the begining of the year. I would say 97% until february where I went to 100%. I had this condition since Dec 03 and it was a long battle. I was diagnosed recently with MAV and given Verapamil. The drug has helped me get get to 100%. I had some minor side effects that I had to reduce the dosage but overall no vestibular symptoms what so ever. I still do my vrt every day as I guess I am superstisious. My life is now back to normal.......... So everyone keep the faith. This is a long battle, the anxiety does get the best of us. To a point the anxiety is worst than the condition. I still get blips of health anxiety I never had. Try and stay focused that it takes a while and do eveything you can to control your anxiety......


Good Luck to all and Happy Holidays

Howie

Hi Howie,

I'm so happy for you and so glad you are feeling better. It has been a long battle for you. I too have been diagnosed with MAV. I really believe it's the anxiety that keeps me from getting better. Are you still taking the Zoloft? How long does it take for that to kick in?

Thank you for the positive post and I wish you all the best!
Jill

So glad to hear that you are feeling 100% Howie2. That is super news. I have been dealing with this "stuff" (i STILL don't know what I have) for 1 full year now and its driving me crazy (literally - i never had a lot of anxietry before and now its through the roof). So glad to hear that people how have been hit with this stuff can get 100%!!!!!!!!!

Thats "hope" for me. Good news for the day.

Can i ask you what you did to get to get your anxiety under control?? I would love to know!

Jill:

Yes I am still on Zoloft 50mg's a day. I am sure I will try to come off after the summer....... It depends on each person and its a gradual improvement but it takes a good 2 months to start to see improvement

Dbirchum: Anxiety was tough and still have it in blips here and there. Kinda of with us forever..........Zoloft and Klonopin mild helped with that. Also some relaxtion techniques and running

Howie

Howie,

Thanks again. I have been on the Zoloft for 1 month now and have not really noticed any difference at all. I guess I'll just continue on with it and hopefully it will kick in real soon.

Thanks for the positive post. I think it really helps those of us still suffering.

Jill

I am still so glad that you are feeling better!! Again, its good for you and its good for 'us' as there is hope that eventually, some people get over this. I hope I am one.

I too, exercise ALL the time. I picked it up since all of this happened and do it every day. Mild improvements. Not enough to help me at work when i am feeling all of the brain fog, etc.

I should try more relaxation techniques. Any tips?

eventually everyone gets over this.

Hi Howie,

Great news - wow 100%. It really looks like the MAV thing was definitely keeping you held back. Also zoloft alone wasn't quite enough it seems. I'm still hanging around 85-90% and getting hit with small decomp events here and there. Just haven't been able to baseline this thing since Xmas. And I really know what you mean about these anxiety moments. For me they occur when I suddenly change activities. Leaving the house and walking to the bus can start a woozy head that can last for about 2 hours. Really sick of it but thinking if I get myself really fit again it'll sort itself out.

Really glad for you...Scott :cool:

Hi Howie,
So glad to hear you're doing well - another positive to show us all light at the end of the tunnel. I was just wondering how long it took for you to really start feeling the positive effects of Verapamil? When did you start it and did you have to gradually up the dosage? Also, once you have stayed at 100% for awhile (say 6 months to a year), can you go off Verapamil?

I had a MAV dx in January, (had been dealing with it as BPPV since March/04), and I am trying Nortriptyline - starting at 10mg and maybe going up slowly to 40 mg if I can tolerate it. I've also been on Clonazepam (Klonopin?) for anxiety for awhile. I started the Nortriptyline in February and am continuing with VRT as well. So far I've not really noticed any major changes. Did your doctor give you a time frame as to how long it might take with Verapamil? In a recent conversation with my otoneuro (who I can e-mail and get replies from! - lucky hey?), she said it could be up to 8 months before I notice a difference, which was a little disheartening to hear, but I wasn't really that surprised - I know there is no "quick fix".

I was just wondering what your experience has been time-wise, although I'm sure we're all different (and in this case on different meds), and will react to whatever we're on differently. I guess I'm looking for a "less than 8 months" positive story!!! Anyway, take care Howie... thanks for the many times you answered my questions before... and another positive story is another notch on the "hope" line ... thanks for sharing it...

~Sheri

Scott:

Getting in shape will help a lot......You are having the ups and downs but as you know you do always get back to the 90's ....I think once you get their and do not have anything that causes decompensation for a consistent amount of time you we remain in the high 90's. Running helps as well

Swirly Girl.....

Yes we started with the nausea at the same time on the board........Its hard to say with the Verapamil. Before I was diagnosed I felt like I was like 90% to 95%. I have only been on the verapamil for 2 months or so............He actually lowered my dosage as I had some side effects and now those are going away........... The other thing is the Zoloft is used to treat this as well and I have been on that for over a year......It could be a combo of the two....I amnot sure how long before he takes me off the meds but he said that was his plan. I see him Friday for the 1st time since my original appointment in January...I will keep you posted


Dbirchum:

Excercise such as running helps.......Meditation and deep breathing also helps.....There are a lot of techniques but use what you enjoy

Howie

All I can say is...FANTASTIC news Howie.

Sounds like yours was MAV after all - but just glad they found out and tried you on the meds!

You deserve a break - am v pleased.

Cl xx

Howie,

Thanks again. I have been on the Zoloft for 1 month now and have not really noticed any difference at all. I guess I'll just continue on with it and hopefully it will kick in real soon.

Thanks for the positive post. I think it really helps those of us still suffering.

Jill


Congrats Howie!! :D how awesome it is to feel better!!


Jill, if its not working for you maybe your doc needs to up the dosage a little bit..i would call and ask, it happened to me before. Ive been on every anxiety med you cant take....paxil, zoloft, effexor xr, and soemthing else i cant remember now....good luck to you! :)

Thats amazing Howie...

Nice to see you are doing great. I too am feeling much much better -- Maybe 98-99% on some days.... I do still have bad days, But I dont think They are that bad as compared to what I had. (knock on wood). I am overall feeling so much better than I was almost 1 year ago. I never ever thought I would be able to feel like this again.

I was taking xanax everyday .25 and eventually weened myself down to none now. I am still taking lexapro, which I have reduced my dosage to 10mg daily from 15mg. I am doing everything as slowly as I can.

I am still really scared of drinking, getting sick etc.... I try to my best to avoid these things. I did go for VRT which I faithfully did for 2 months, but then stopped it myself, and noticed that I actually felt better after stopping. I dont know if it was just coincidence or not.. Probably coincidence.... Either way, whatever I did or didnt do helped.



Tummy

tummy

glad to hear your better too! how long did you have this for and when did you start to really feel good?

im on almost 7 months and ive felt better...but not normal....and now im back to feeling kinda bad....but i hear thats the normal cycle. i love hearing all of these 100% stories! anyways...thanks

chris

ComeRelax,

I would say I started to notice a real difference about the 7th-8th month.. I still would wake up and feel off, but it was definatley not as severe as it used to be.... I really coulnt tell you an exact date though.. But It happened gradually.. Even last week I had 3 days in a row where I felt bad... But It seemed to have faded.... This going from everyday 24/7 crappiness!!!

May 25th, 2005 was my start date, so in about 1 week I will be 11 months into this. As long as your getting better periods.... Thats HOPE right there!

Tummy

tummy

did you do any vrt or just do daily stuff?

Relax,

I actually did go for VRT and was very determined with it... About 2 months into it, I took a little break .... Just because I was too busy and didnt even have time to do all the excercises. After about a week, I felt a little better, then I resumed it again, and I felt worse... ( Which is the point ), but eventually.. I cant say when I stopped it alltogether, but I continued to go to the VRT appointments where the PT would check my progress... I guess I figured the VRT was a good way to judge any progress I was making.. If I could do something that was difficult before, it was a good thing.

In any case, I stopped and havent done them for a while... A few months after I stopped I began feeling better.. I think it may have been coincidence, but who knows.

Tummy

HI ComeandRelax

I wanted to give you an alternative view of vrt as Tummy's experience is definately very different to mine. I started vrt in October 05 and had been having problems for a year before that after having labs. I was improving but at a very slow rate and was not able to drive etc. Since starting the vrt I have seen gradual and considerable improvement. I am able to drive much further and I have virtually no dizzyness now. There are things that still affect me however the effect on my life is much reduced.

The vrt has definately helped me to recover much quicker than if I had not had the vrt. When you start to do vrt it does trigger more dizzyness as you are doing the movements that are likely to cause dizzyness - so I wonder if in Tummy's case the vrt triggered dizzyness which the brain has got accustomed to - so maybe it did help her too.

Hope that helps, just wanted to say its worth persevering with it even if it makes you feel bad. Do you have vrt that you are doing on a regular basis?

Good to hear from Tummy that you are feeling much better too.

Best wishes
Tesss

Thanks Tess,

Its been a long road, I am really happy to be where I am.. There is nothing like being able to feel better when you have a new baby in the house. I am thankful for every day now..... I smile more, and try not to be so judgmental.



Tummy...