So this is where you are all hiding

So this is the MAV cafe! Scott & Adam I can see you are here - healthboards inner ear forum has become very restricted in what you can post. I cant even address anyone by their name!

For those of you who dont know me I’m dizzyrascal & have had the distinct pleasure of dizziness since 2005. Oh yes first they thought it was labs, and then a year later MAV.

But its not all bad news. I was symptom free (well 98-100%) from Oct 06 - May 2008 having taken pizotifen from Sept 06 - Sept 07. Life was great - apart from being a fat man ( you will understand if you have ever taken Pizo). What a stroke of luck eh that the first med I took cured me?!!

Anyhow - its all gone balls up. I have been a nasty relapse since May. Pizotifen didnt work again (: Sodium Valproate provided some relief, but I was still up & down like a yo yo.

Last week I tried Ami, but it made feel worse. To make matters worse, I’m also dealing with Interstitial Cystitis - which is rare in men (had htis for 1 year) & its very painful. Clearly all the meds arent helping it.

So its been a pants year - lost my girl ( dont think she could handle me being ill again), lost my confidence & generally been bummed out. I’m in a current state of mind wherby I’m only 25 & the word normal doesnt seem like its ever going to return again. How will have or support a family in the future. It can all get deeply philosophical!

That said - I have decided to jack it all in & go travelling roudn the world next year. I havent ever taken a break since taking a russian & serbian/ german degree at Uni & worked ever since. I guess my ailments will have to follow me around - lets hope they cant hack the pace & dissapear!

Given this junk doesnt like going its own its looks like I will have to be guinea pig boy on my travels & start trialling mor preventatives. Should be fun!

So there is my introduction - I guess I should post my photo to join the club. Oh and I’m from London ( but im actually only half english! Part aussie you see)

What are my symptoms - spaced out, vision all fuzzy & unfocussed, feel hungover, off balanced & detached!

What do I love: Motorbikes ( I rode all the way to Italy & back even with this junk - yeh!), Climbing ( bizzarly doesnt make me more dizzy), books, films, beautiful women, booze ( I havent had a drink in a year - i’m the ‘sober’ guy at parties), russia, travel, photography.

Currently I’m feeling like I’ve been run over by a car, but sure it will improve!

If anyone has got to 100% on any meds let me know as I might give it a whirl.

Hello and welcome to the forum. It’s a bummer to hear that you aren’t doing to good right now, but at least you are trying to keep it from stopping you from doing anything.

Myself, I have found tremendous relief from meds, I even have days here and there where I can say that I feel almost 100%. For the most part though, I put myself more around 80%-90%. If it helps, I take depekote which I think is the brand name for one of the meds you mentioned, along with klonipin at bed time.

Brian B

Hi Brian

Glad to hear you are doing well. I took Depakote for 3 months - it did help a bit - but then symptoms got worse again so I gave it up.

What else has helped you? How long have you been dealing with this?

Rascal

Hello Rascal - Welcome to the board (sorry you’re here for the reasons you are though). If you gotta go through this crud, this is the place you wanna go through it. You won’t find a better bunch of people, and the info you’ll gain here will be invaluable.

Sounds like you’ll fit in well here, I admire your positive attitude. :smiley:

Anyway, just wanted to say welcome here.

Kim

Rascal!

I was hoping you’d find this forum sooner or later. The healthboards is a joke these days. They actually forced a name change on me over there and gave me the name if you can believe it! AND they banned Subs30! When that happened I stopped going … all they give a hoot about over there is revenue. I hardly go there anymore. It would be great to get Jade and Violet over here. We need to come up with a secret way of getting their attention.

Anyway, glad you’re over here. Sounds like your still in the sh**ter. What’s the plan on the meds front now?

Me, I’m slowly dumping SJW and about to try a hormone regime. If Julie is miraculously healed on this PXP stuff, that’ll be the next stop I’d say.

Cheers … Scott 8)

— Begin quote from “dizzyrascal1983”

Hi Brian

Glad to hear you are doing well. I took Depakote for 3 months - it did help a bit - but then symptoms got worse again so I gave it up.

What else has helped you? How long have you been dealing with this?

Rascal

— End quote

I’ve been dealing with this since Sept '99, my oldest sons birthday, but wasn’t diagnosed until Jan '05. I do a lot of little things that all add up. I “try” to keep the stress out of my life, a strict sleep schedule, diet changes. I should be more active than I am, but I also have a bad ankle that limits me a little bit.

Hi Scott!

Violet still takes the time to respond to every post on that board - she’s too nice to be there!

Indeed I’m still lingering in the sh*tter. I’m finsihing work in 3 weeks though & have 10 months travelling ahead of me so I guess I shouldnt complain. I think taking away the stress factor will help me a lot too.

I’m going to take a little break from meds for a few weeks, just to clean my system out. Can’t be good taking multiple meds for too long.

I think my next choice of med will be Propananol. I actually emailed Dr Hain last night to ask if I could arrange an ppt with him in the US. All his research & expereince point to Verpamil & Effexor as choice meds to clear this junk up. My doc in London is great, but she doesnt have expereince of these particular meds. I’ve heard some good stuff about topamax - but it makes you feel like a dogs bottom, so I think I may pass.

Hain actually got back to me! He said you can organise a telephone consultation without having to go to Chicago. I thought it might be worth getting a second opinion. Not sure if he can write me a prescription for any meds though?

Anyhow onwards & upwards eh mate? I’ve been feeling really bummed by all this junk lately, & cant still cant believe I was once symptom free for a long period of time. Its taking a toll on my young life!

Kim - thanks for the welcome. Hope you are feeling better.

Rascal

Scott

I was going to ask your view on the PXP stuff - I’m a bit worried about chasing wild geese these days - but let me know if you try it.

Welcome rascal!

I do phone consults with Hain. I hope he told you the expense. Nobody over there told me until last minute that there is no insurance coverage for phone consults. I think the first consult was something like $250 and follow-ups are $160.

I’ve had a handful of consults with him and every single time he writes a Rx for me he says the same thing “it’s a little tricky writing prescriptions out of state.” But the pharmacy always gets them.

If he can’t actually write you a Rx to an actual pharmacy out of the country, he does write a letter to your PCP - not sure if your PCP would follow his advice.

The good thing about doing phone consults as opposed to coming to Chicago is that you get to work with Hain instead of his associate. Hain doesn’t see patients anymore, he only does phone consults, and he’s great to work with.

Welcome aboard, Rascal, may your MAV journey be short,

Julie

Hi Dizzy Rascal

Just wanted to say a belated welcome! I am also from the UK and am 29, so am a similiar age to yourself. I hope you get as much out of this board as I have.

Becky