Progress??

I've been debating writing this post for a while. I think I'm getting better. *Knock on wood* I haven't had a vertigo attack since April 7th. 6 weeks! Wahoo! And the vertigo attacks I had for the 1-2 months prior to that were no where near as severe as the ones I had been having. The all night vomit fests.

I started JOH in February sometime. I don't remember when exactly. I've been on the anti-virals for almost 2 months now. Went down on the dose 4-5 days ago. I also started upper cervical chiropractic, monolaurin and one or two other things over the last few months. So that's what I've done to achieve this recovery, if that is what it is. I had a cold a couple weeks ago, and the weather has been non stop thunderstorms around here for quite a while. No attacks. That bodes well, right?

Last night, I ate home made hamburgers for dinner with over 700MG of salt in the meal. I haven't had that much salt in one sitting in MONTHS. I wondered if I would ever eat tasty food again.

I do have a couple remaining concerns. First, is the quantity of things I am taking. I have lingering questions regarding how healthy it is for my kidneys and liver to be taking so many things. Some of them don't concern me, some of them do. I'm still taking a diuretic, but recently began ramping off of it. And I'm going to be going down to a maintenance dose on the anti-virals. And if this trend holds, I'll try to eliminate some things and see if it makes me feel any worse.

I do have a question for you guys. For those who found relief via such means, did you still have balance issues for a while after the vertigo left? How long? I still have mild tinitus and occasional mild fullness in my bad ear. I'd love it if that went away, though only time will tell. The thing that really bothers me is the lingering balance issues I have. Sometimes I'm sitting there in my chair and it suddenly feels like I'm moving when I'm not. Or, I have a hard time changing focus with my eyes, especially while driving, without it feeling like I'm moving in ways I'm not. I understand why those things are happening(damage to the balance system), I'm just wondering if they will go away as my ear heals, assuming that is in fact what is happening to me right now. The nausea that comes with those feelings sometimes sucks. It's not vertigo, just annoying. And my anxiety usually goes up a notch if I get those feelings for any significant length of time.

Does it sound like I'm getting better to you guys? I feel so scared sometimes. The last year of my life was a nightmare. So afraid for so long. I wanted to die. I actually stopped eating at one point, thinking I would starve myself to death. I lost so much weight. I could use a shoulder to cry on.

 

Thanks BumbleBea. Most of the time I'm a really bad introvert and don't like being around people much. Right now though, I really crave human contact. I was so scared for so long. Couldn't stop crying. My life felt like it was over.

I have read your post in the database on MAV. It's certainly possible I suppose that I have that in addition to menieres. My attacks have pretty much always been purely MM. At least, that is what I believe. I would always be deafer in my bad ear after an attack. My good ear has normal hearing. My bad ear is around 30-40% loss. It was as bad as 60% loss during the really bad stretch I had in November-December of last year. I was so deaf then. That sounds like it was one of the big distinguishing factors when I read your post between MM and MAV. MAV doesn't actually do any damage to the hearing or balance organs. I do on occasion have ocular migraines. Where I get a visual distortion in the center of my vision and it slowly spreads over the ensuing hour until it leaves. They never cause any pain. My balance issues aren't like that though. They aren't episodic. They are pretty much constant over the last 6 or so months, or nearly so. Does that sound like MAV?

Partly though, I just don't really want to consider the possibility. I've made SOOO many dietary changes over the last year, thinking(wrongly) that what I was eating was what was causing the disease. The eating stopped, but the attacks didn't.

 

Thanks BumbleBea. I'll try to find some real contact. I don't have many friends.

I'll read it again.

Vicki. Can the chronic off balance feelings I have be accounted for my MAV? Can they also be a consequence of all the damage done via menieres attacks? I have no doubt in my mind that I do indeed have menieres disease. All the symptoms and markers are there. Unilateral hearing loss, tinnitus, vertigo, etc. I would be deaf as a post after a bad attack and my hearing would return (mostly) in the days/weeks that followed. Until I had another attack of course. I suppose the question is whether I have MAV in addition to that. Though I read through your list of recommendations, and the only things that stand out are that I still eat cheese and sour cream. The rest are all things I've come to on my own as I have tried to alter my life to eliminate the symptoms I have suffered from.

 

Vicki... Did you by chance read my last question to you?

I have no question whether or not the balance system was damaged. When I would have the extreme vertigo attacks, I would be distinctly off balance for days in addition to being deaf as a post. Walking around in the dark was really hard for a while, as was changing focus too quickly with my eyes. My brain was relying more and more on my eyes for spatial awareness and balance as the input from my bad ear changed. If that isn't damage to the vestibular system, I don't know what is.

 

Thanks BumbleBea. Either way, you guys are wonderful.

Sensetive to light. Yes. Sensetive to smells... depends on the smell. Some things make me nausious, like the smell of strong cleanering chemicals. But I also have tourettes and aspergers and a number of sensory issues. I have since I was 7. None of them EVER related to my sense of balance. I was as active a kid as could be. I rode motorcycles, played sports and loved rollercoasters. My biggest sensory issue is tactile. The feeling of certain clothes on my skin feels like fiberglass. Like flannel. I'd rather wear burlap than flannel. It hurts my skin. None of those things trigger the balance issues though.

MM itself can cause lingering balance problems, can't it? The balance organ is dying. It takes the brain time to adjust to the changing information coming from the ear.

 

Yeah, that's a good description. Moments, sometimes frequently, where before I would have begun wondering if I was about to be in trouble, but it never materializes. It seems to me that it simply could be whatever diminishing, causal agent that still remains attempting to ramp up to cause another attack, yet it doesn't have quite as much oomph as it used to so it just fizzles out. And, they seem to be getting fewer and farther between. On occasion, I would wake up and from the first moment know that I'm in trouble that day, being distinctly off balance. Those days have happened to me since April 7th, but not to the point of vertigo, and not for 3-4 weeks.

And you are certainly right that I am in a better place than I was. Going from wanting to end my own life to now, feeling that if this continues I've been given a priceless gift.

 

At my worst, I was having 2-3 attacks a week, and my absolute worst was 3 attacks in 4 days. My confidence is definitely up. I don't eat out yet, though mostly for financial reasons. Since I got sick, my family and I have dramatically altered how we eat. Mostly in an ultimately failed attempt to resolve my condition through a healthier diet. But, I lost a lot of weight and am now much healthier than I was. My salt intake has gone up considerably over the last month. At my worst, eating much more than 600MG a day made me much more disposed to having vertigo. I ate 1200MG at dinner alone the other night. Not a peep out of my bad ear. So flavor has returned to my life. And I do all the grocery shopping for my family. So I'm out and about all the time. I understand not feeling good. I still don't feel totally normal, but I haven't had vertigo for over 6 weeks.