Meniere's Disease Support Group

My balance has gotten to a point that I cannot walk at all at times. NOT TOO TERRIBLY OFTEN! In the past few months, three different times, I could not walk even with the help of someone. I often do not have enough balance to walk w/o help but I can walk with help. The lack of balance is just part of the issues. I have vertigo that causes me to bury my head in my hands, tears are hard to hold back & I tend to sit more often since being on my feet is difficult most of the time.

I am now seeing a specialist that is so specialized that there are only about 16 doctors in the entire nation. I drive 2hours each direction to see him.

So far he's diagnosed me with bilateral BPPV. My right ear responded to therapy but my left did not.

He's also diagnosed me with Vertigo Migraines.

http://www.mayoclinic.com/health/dizziness/DS00435/ DSECTION=causes

Today he put me on a medication called nortriptyline, originally manufactured for depression but has multiple other uses one of which is Vertigo Migraines. He believes many of my symptoms could be such but he said, "by no means is this all that's causing your symptoms of vertigo & lack of balance. You have symptoms that don't match any one or two or even three diagnosises" (sp)

Just a note: I have had 2 brain MRIs, one without contrast, one with and a CT-Scan. My ears, bones, and all do not show reason for the problem though there is some scarring in the left mastoid bone (from frequent ear infections) which should not be causing any of my symptoms. I do not have any brain tumors which is what the MRIs were for.

Tamie

~God is Good and I am Glad~

Tammy, I'm so sorry for all that you are experiencing. Keep up your spirits. Many of us share the same symptoms and frustrations with diagnosis and treatment. We are here to listen to and support each other. Hang in there!

Tammy, sorry for all your issues. I feel for you and totally understand where you are coming from. I am waitng for more tests too. Sometimes it feels that it's never ending. But I really relish the moments or hours that I feel better. I usually feel better sitting and lying in bed watching TV I almost feel NORMAL and that makes me feel GOOD, even if it is only temporary. Hopefully with all the continuing research that these doctors are doing they will find something that will help us.

Hi Tamie,

Have you been careful with your diet? Are your stress levels ok? Please try to find the root cause for all of these symptoms you are experiencing and write them in a diary and then do an analysis to see if there are triggers involved. Also, please try to follow a vitamin regimen which will alleviate MD symptoms and perhaps the other conditions.

Feel better soon!

Fondly,

Licho

I still have not started a journal. I really need to. I have done some mental checking... "lots of salt for a few days" -- I feel like... "Lots of stress" -- I feel like...

Nothing has lined up but I'm likely to learn more if I'd do better at keeping track.

Hi Tamie,

That's good and keep it up please. Be vigilant of your foods and stress levels, this is important.

Thanks for the update.

Licho

I couldn't have been more of a sceptic about a change of diet truly effecting the complete debilitating, madness that had haunted my life seemingly out of nowhere BUT it's really true: first of all, I never was one to grab the table salt . 2nd, when I started the diaretic alone; I was still suffering daily drop attacks so, I gave it a chance. I started by reading the labels of everything at the grocery store and it made a huge difference . The day's I'd cheat ( like our family's traditional Friday pizza night: terrible attacks the next day. I didn't give up the pizza, I just got veggie on my half.

Lastly, don't dismiss the journal or just jotting down the time of day, the weather, what you ate, etc. or have someone do it for you if possible. I had my 13 yr. old do it for me and bring it to my husband. It made her feel like she was helping and made her feel more in control .

Non of this made it go away of course, but I truly believe it would be worse if I didn't follow a low -salt diet. Plus, I can say that it's not a gluten allergy ( thank goodness). I still chose to have the Gentamicin Inj. Because I'm the only family breadwinner and haven't been able to work in almost 4 mos.

Good luck to you! I know what it's like to have multiple health issues that are overlapping and seemingly impossible to untangle.

Hi and welcome, I do watch my diet and keep a diary too. Both things have been very helpful. Did the G-injections help? All my best to you, Licho

I had it gone almost a week ago and yesterday was my first really good day this year. I did so much cleaning, going up and down the stairs, bending over w/o throwing myself into an attack and today I'm a little sore but confident enough to call my work and tell them that I'd be returning w/i 2weeks. I'm very glad I did it. Unfortunately, it didn't resolve my tinnitus and fullness in the ear but I now can go back to making a living! After being bed ridden since Jan 13th.

I am very happy for you and continue to feel better and improve. All my best, Licho