70% and holding

Hi Everybody,

Just wanted to give you a quick update. In June 2010 I made 18 years with this MAV Condition. I’m about 70% improved so at least it’s going in the right direction but it’s been at a snail’s pace. I only take a half tab of Xanax per day…but on more bothersome days i will take one full tab (0.25 mg). I use to be on a much higher dosage and higher strength of this medication. For some reason anti-depressants never helped. I’ve improved with much less vertigo episodes and less brain fog. I still have the motion-tension which is mostly felt in my head but that is a little less now. The improvements did not really begin to be more noticeable till i quit my very stressful job in 1999 and moved away from that city i worked in. Once i did that the improvements began very, very slowly. But even with the improvements i still can only work part-time.

So i don’t know how much more i will improve. I just have to try and keep positive and hope for the best. I"m just thankful for the small improvements i’ve made. Also hope one day i will be able to work more hours.

Thanks for listening!

Joe

Blimey Joe what a long haul you’ve had - I can’t imagine how frustrating it must have been for you

Hi Joe,

Didnt realize you had this condition for 18 years, I have had it for over 25years but cant remember exactly when it first started, I believe I was 18 when I had my very first full blown vertigo attack, after a lot of red wine at a party.

Thats amazing you are 70% improved. Are you taking any other medication apart from the Xanax?

Christine

Thanks Lorcalon and Christine.

Lorcalon…yes, it has been a very long haul! I sometimes have doubts about reaching 100%…but i must keep believing that it’s possible. Even though i personally believe i’m at 70% improved…i cannot work full-time and very fragile if i don’t get enough sleep or if i have a very stressed out day. Have to watch my diet daily. Years ago…sometimes i even had to leave movie theatres and or restraunts cause of a fear i was going to experience Vertigo. That doesn’t happen anymore. Plus i can fly on a jet with little issues now…so lots of little improvements. One thing i know i will never be able to do in my life time is go on a Cruise. I mean i’ve always been motion sensitive and even more so with the MAV so a cruise is definitely a no no for me.

Christine…so you’ve had this condition for 25 years? That is many more years than myself. Well…red wine is something i must stay away from. About a month ago is topped Verapamil. I’m only on a small amount of Xanex …but i will be seeing another Neurologist sometime early next year and were going to talk on which medication i will be taking next. Possibly Proponhal.

Thanks for your support.

Joe

Joe,

That is good to hear, especially considering the low amount of medications in general. The only med that I am taking at the moment is betahistine. (Serk/Antivert) It hasn’t been doing much for the dizziness (which has been getting worse) but has been helping tremendously with the headaches. Just taking Xanax and your getting better gives me a little hope that it may work it course and I may see some improvement over time.

Brian…

As i’ve mentioned in my post that i’ve had this condition for 18 long years…the first 7 years (1992-1999) i was not making any improvement and was miserable and stressed out with a demanding job. It was so bad that i went out on 2 short term disabilities. The doc put me on 7 Xanex’s per day with strength 0.5mg. I remember having to take lots of naps. Then i left the stressful job in 1999 and moved far, far away (out of the big city life) and in my opinion that was beginning of the healing period… show little bits of improvement and i began too very slowly ween down off the Xanex. But lowering the xanex has taken me a very long time. But what the xanex always done for me is to lessen or decrease the motion and squeezed feeling in my head plus keep the vertigo away. The anti-depressants could never do that for me. So even though i am only on a 1/2 tab of Xanex per day …there was a time i was on a much larger dosage.

You said the only medication your on is Betahistine…but you mentioned Serk/Anti-vert. Are you on that as well? Anti-vert was the first medication they gave me back in 1992 for the severe vertigo and it did not help at all.

Joe

Hi Joe,

70% is not bad - I mean, not 100% but pretty good, especially only using a small amount of Xanax. Sounds like getting out of a stressful job and environment played a big part too.

Cheers
Vic

Hey Joseph,
Have you tried the longer acting benzos, namely Valium and/or Klonopin?

Ive gotten some relief lately from Promethazine/Phergan…sleeping better, less anxiety, reduced dizziness. I added it to my arsenal of Cymbalta and occasional low dose Klonopin…with the combo I"m in the 90% range most days…lately!! I"m afraid to post in “success stories”…don’t want to jinx it. :slight_smile:
Kelley

May your success continue for you. :slight_smile:
I have done much better over the last couple of years, overall, than I had the previous 4. It came about understanding what I was dealing with and what triggered my symptoms and avoiding those things as best I could. I came to feel mostly in control of what I have and to understand there are reasons when I am sliding into a bad spell, to find them, and to do what I could to turn it around. And getting my independence back is worth any sacrifice or alteration or jumping through hoops that is necessary. Set backs and frustrations happen, but I’m doing pretty good.
I wish you continued health.

I gotta wonder: 70% of what? 100% of what?
At 60, I’d like to be as bright and enthusiastic and focused as I was at 50, 40, 30 . . . but I don’t know that it’s reasonable to expect.

Joe,

Betahistine is the generic for Serc/Antivert. Like you said, it isn’t doing squat for the vertigo/dizziness.

If you remember, you and I used to converse on here a lot. I haven’t had much to say lately, so I’ve been trolling. Saw your post, and thought it was good to hear improvement from you. Especially since I’ve been sliding backwards FAST for the last couple of years.

Thanks Kelley, Brian, Burd, & Victoria for your support and input.

Kelley…actually i tried valium and Klonopin a number of years ago. Valium did not help much and Klonopin appeared to help but it was giving me a slight side affect so i switched back over to xanex. Maybe i will talk to my doctor and re-visit Klonopin. I’ve actually been wanting to do this for quite some time. I guess i’m a little cautious about changing a med that works for me…and trying something else. What if the KLonopin doesn’t work and i go back on Xanex…i soppose there is always a slight risk the Xanex may not help anymore…or atleast i’ve heard this somewhere.

Hey Brian…i remember you! Glad to see your back. I’m sorry things have not been going very good for you. Why do you think you’ve been sliding backwards? I pretty much know what food and drink i need to stay away from…i know that i need to keep my stress to a minimum and i know that i’m not able to work full-time + i need 9 hours + sleep…so i stick with part-time work and it’s a job that i enjoy and it can be a little stressy at times but nothing like working for a huge corporation. I know that going to the gym is also very important for my overall health. Brian…i really keep my life pretty simple atleast for now. Have no other choice…

Thank you burd for that nice compliment. I know what you are saying about understanding what may have triggered this condition in the first place. I honestly believe it was the job i had many years ago…very, very stressful…too much worry and not feeling appreciated. I think it all hit me when the Vertigo began. Now…i have a job that is more satisfying and uses my god given skills. I may not make the money i use too but atleast having a job that is smaller scale and less stress must be one of the reasons i continue to make small improvements. Thanks again Burd.

HeY Victoria…you are right, getting out of a job working for a huge corporation where they take you in and spit you out! I never really felt appreciated…the work was very stressful…lots and lots of favoritesm. So much negative going on…so i’m glad i took a severance pkg and got out when i did. Very stressful work can take really take a toll on you.

A Big Thanks to all of you!

Joe

Joe,

The reason that I am slipping backwards is that I also have bilateral Meniere’s, and it has been progressing fairly fast in the last couple of years.

Brian
what is your prognosis in the long run? Will you need a padded rubber suit so you can just bounce when you fall? :slight_smile: I’m kidding of course, but worried about you.

Joe-
I know they make xanax XR (extended release) if you don’t use it already. I think having a smooth onset/departing of the chemical might be better than the rapid up/own you typtically get iwth short acting
agents. You may want to try Promethazine/Phergan if you are having any nausea/dizziness/insomnia/anxiety issues…it has been helping me. It actually stopped being as helpful after 2 weeks of using it every night, so
now I"m taking a two day break and upping my klonopin, and then will go back. The Klonopin I use is .5mg tablets cut into fourths, so it’s very low amount and I experience NO SIDE EFFECTS at the level…if I up it, I can get
tired and feel a little out of it…

Kelley

Kelley,

Humor is the best way to deal with something chronic. So I appreciate the joke. My wife and I actually joke about something similar, although you need to add in the need pads, padded jeans, padded gloves, and a helmet so that I can go out and about occasionally. :lol:

Hey Kelley,

I didnot know they had a Xanax Extended Release. How long has that been on the market? Well…i’m on such a low dose now…1/2 tab 0.25mg…and sometimes one tab if i’m having a very bad day. With the dosage being so low do you still think it would be a good move to purchase the extended release?

I’m not having any nausea or dizziness issues most of the time. Every now and then i have some nights where i wake up from sleep…visit the restroom, return to bed and have some difficulty falling asleep but it’s not everyday. If i exercise atleast 3 days a week that seems to help with insomnia.

what exactly is Promethazine/Phenergen?

Joe

Hey Joe – you’ve certainly been on a long journey with this but have done so very well cutting Xanax down so low and maintaining 70%. Baloh will tell you that if a migraineur can find a med to decrease symptoms by 50% you’ve hit the jackpot! You’ve done much better than that. Here’s hoping you can find the way to 100% or as close as you can get.

S

Hi Joseph,
I think it might be worth asking a pharmacist or even your doctor. I think the half life on xanax is like 4-6 hours…vs the XR…it would just make more sense when you don’t want to use a lot. Valium and Klonopin have half lives of like 20 hours…they use those two meds to wean off the shorter acting benzos. But if it’s working…

Promethazine is an antihistamine, but for whatever reason it helps me sleep, less anxiety, and less dizzinesss…which all equals a better mood. I didn’t take it the last two night because i felt it wasn’t working as well, and I notice a big difference. I’m hoping if I take it 2 weeks on and then take a small break, then go back it will keep it’s potency for me.

Kelley

Hey Scott,

It certainly has been a very long journey and in my opionion you never get use to the symptoms. It’s very incomfortable and bothersome nearly everyday…of course, some days worse than others. Thanks for the compliment regarding decreasing the Xanax but it really has taken alot of time to ween it down… I never felt like i was addicted per se …i just felt that this medication helped to melt some of the motion and squeezed feeling in my head + and keep me working part-time and basically to have a life. Yes…i’ve been able to decrease the symptoms by 50% in my opinion but remember, i’ve had this condition for 18 years so it has only been the last couple of years that i can honestly say i’m about 70 percent.

Thank You Scott for the postive support. I certainly hope you will adventually get close to 100%.

Joe

Kelley,

Next time i see my doc i will mention it to him.

Thanks Much,

Joe