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question for howie2


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Old 01-24-2008, 02:44 PM   #1
comeandrelax
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question for howie2

hey man, i was reading some of your past posts and came across your 1st one. it said htw all your tests showed that something was going on but that it wasn't conclusive on if it was a central problem or an inner ear problem. and that your doctor said that you were just getting mixed signals to your brain and that you tried VRT for 6 months

that caught me because i had the same results. my doctor said i have no inner ear damage and that my mri was clear and all of my neurological tests are normal so there is nothing wrong with my brain so its just mixed signals that are causing my symptoms. latley ive been on a MAV medicine because after 2 years its clear that something is stopping me from getting better.

my story is very similar to yours. i never had a spinning vertigo. its always just a off balance woozy head feeling that gets worse with turning to fast or too often and unsteady ground. i also get headaches and pain in the back of my head and pressure.

i saw that they treated you indirectly with zoloft and you got better because you had an underlying migraine condition. my family is huge on migraines. my mom has had a constant headache since she was a teen ager.

im on the second week of my MAV med and was wondering how long after you started taking yours that you started to feel better? i also have problems with my vision meaning that if i look around with just my eyes i feel off. but it seems the more i do it the more i can stand it. if that makes sense.

im going on 26 months of this and im really ready to get better. the only thing that has ever made me feel better is xanax.

anyways thank you for your time and help

 
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Old 01-25-2008, 06:17 AM   #2
Howie2
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Re: question for howie2

Yup that sums up my unfortunate story. In year 5 of this garbage... But I did have a 12 to 15 month break... I really dont know how long I was on Zoloft the first time. So I dont know how long it took to work. I was taking Zoloft and Klonopin for Anxiety before the diagnosis. I did not get to 100% the first time till the doctor added Verapamil which was at least a year later, maybe longer..... f I get a chance I will look at some old posts and maybe I had something in there. I remeber starting Zoloft in Sept I believe 04 and I was diagnosed by a Neurotologist with Vestibular Dysfunction probably central... I think the next year I went the VRT route and was feeling like 80% by the time I saw the Headache Specialist in January 06. By that fall I was 100%. This stayed till this fall after trying to wean off all the medication.

Currently I am 85% to 90% most days.... For some reason I need more Zoloft 50 mg's to 75 mg's this time. Aslo I tried to wean off the Klonopin and I had a rough few days after cutting it down from .5 2 times a day to 1 time a day..So I think its to early for that. Klonopin according to by Headache specialist is also used for the MAV. Same family as Xanax but less addictive and much longer life.... During the relapse I cant say between the Klonopin and Zoloft I started to see relief 8 weeks to 10 weeks in. And it just takes time and improvement. Sort of 2 steps forward one back... You need to be patient. My biggest problem is I developed secondary anxiety from this or some hypochondria and that holds me back here and there. I focus and obsess to much on the condition. I also take Magnesium 1000 mgs a day 500mgs 2 tiomes and COQ10 500 mg's one time a day... I excercise pretty regular except when I am at my worst. Right now I run 20 to 25 miles a week and do weights 3 to 4 days a weeks.


Good luck and hope that helps..what meds are you on as you may need a combo like I did Zoloft, Klonopin, verpamil, Are you seeing a headache specialist....

My doctor started a vestibular Migraine Support group 1 time a monht. It starts Feb 6th so hopefully with his team of doctors and 20 patients I can gain some tips, insight and see if any new research is going on

Howie

 
Old 01-25-2008, 02:27 PM   #3
comeandrelax
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Re: question for howie2

thanks howie. im taking 50mgs of Nori (same kind charlotte has) and xanax when i need it it

did you do any VRTs?

 
Old 01-25-2008, 03:09 PM   #4
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Re: question for howie2

Howie...can I ask you if you worked up to that amount of running? At this point, exercise really ramps me up...could you let me know how it affects you?

Thanks so much for your input...I would love the support group info too...sounds great!

 
Old 01-25-2008, 05:09 PM   #5
Howie2
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Re: question for howie2

Comeandrelax:

No No VRT's in almost a year. I was still doing some maintenance and the Neurolgist said I did not need to so I stopped.

Charlotte:

I was in very good shape before this happened so the running is not knew. I gained a few pounds from the condition , medication and the resulting depression. I do not run like this when this first started or when the relapse started. I would say 80% I can run . I do not grt vertigo , just my eyes feel off , nausea , head pressure when I am at my worst. Running makes me feel so much better. Like a high after I run..... No while I am at like 90% it is pretty easy....But through the entire ordeal I have still worked adn worked out..Not as intense but always have managed to work out and do cardio

 
Old 01-26-2008, 03:22 AM   #6
comeandrelax
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Re: question for howie2

Quote:
Originally Posted by Howie2 View Post
Comeandrelax:

No No VRT's in almost a year. I was still doing some maintenance and the Neurolgist said I did not need to so I stopped.

Charlotte:

I was in very good shape before this happened so the running is not knew. I gained a few pounds from the condition , medication and the resulting depression. I do not run like this when this first started or when the relapse started. I would say 80% I can run . I do not grt vertigo , just my eyes feel off , nausea , head pressure when I am at my worst. Running makes me feel so much better. Like a high after I run..... No while I am at like 90% it is pretty easy....But through the entire ordeal I have still worked adn worked out..Not as intense but always have managed to work out and do cardio
howie when you say you didn't get vertigo do you mean the full spinning type??

i get an off balance and unsteady feeling that gets worse with movement and visual stimualtion. sometimes if im sitting on something like a stool i feel like its moving undermeath me. often it feels like the groud is unsteady. did you get any of that?

 
Old 01-26-2008, 06:48 AM   #7
Howie2
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Re: question for howie2

Yes no vertigo

I just felt off blurry vision which made me feel unsteady..As far as the floor moving....Not sure about that
nausea all the time

 
Old 01-26-2008, 07:24 AM   #8
charlotte67
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Re: question for howie2

Yep, nausea...bad visuals. Lost loads of weight...The meds are helping that go...yippy.

 
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