Ray Hines' Meniere's Page
© 1996 Raymond Hines, III [email protected]

  Me and Meniere's Disease
Silent Terror

Me and Meniere's Disease

My name is Raymond Hines, but folks just refer to me as "Ray." I live down in South Florida on the west coast in a beautiful town with the name of Sarasota. I'm 29, recently married to my wife, Nicki, and have been profoundly hard of hearing since birth (due to my mom's German measles).

And now for the nitty gritty... :)

I haven't been officially diagnosed with anything yet but all signs point to Meniere's so far into the game. I haven't had insurance for a couple years simply because I couldn't afford it at the time so I hadn't been to a specialist yet. In light of my situation, though, I recently signed up for a policy and it kicks in on the 1st of January so I am looking forward to seeing a specialist and getting this taken care of.

Basically, this all started one and a half years ago in July. About 30 minutes after a delicious but very salty plate of BBQ chicken wings I felt very, very drunk. I also felt extremely dizzy and an incredible amount of vertigo -- if I just moved my head a tad, I'd be spinning off into the south pole. Not knowing what this was, I assumed it was due to the chicken being bad or spoiled so I went outside (I lived in the woods in a trailer at the time) and sat down in my car getting ready to barf out the side with the door open. I was pretty sick and ended up throwing up 13 times that night in the span of an hour or so. It was awful -- most of it was just dry heaving since I had already barfed my dinner the first two or three times. I was a bit confused, too, because usually when I throw up from bad food, I feel better almost immediately. Not this time. After a couple of hours, I finally got out of the car and stumbled back into the trailer and laid down. I conked out for about three hours and when I woke up, I felt better. I was moving that day (which was why I was out in the car -- there was no furniture left in the trailer except for the empty bed) and felt good enough to finish the moving process. I essentially blew this one off as a very very bad case of food poisoning and felt fine afterwards -- it was the only attack I had for months afterwards.

About four months later I had another attack, with the same symptoms as above. This time I had finished eating Christmas dinner at a Chinese restaurant (well, we ain't exactly conventional!) and we went to the movies. During the movie, I felt the familiar vertigo, dizziness, and nausea. This was about 30 minutes after we finished eating, by the way. Somehow I managed to keep very still and finished the movie -- I was again thinking, "Here we go -- another case of food poisoning." I did tell my parents-in-law and my fiance (at the time) that I wasn't feeling too good and that they'd best take me home ASAP. It was pretty difficult trying not to throw up in the car during the drive home. It seemed like we hit every damned red light on the way! When we got home, I stumbled my way to the bedroom and laid down. I did throw up several times, and just slept whenever I could. A few hours later into the evening, I felt better.

Again, I blew it off, thinking it was another case of food poisoning. I had another attack a few days later after eating some fudge. Sigh. The usual symptoms showed up and I went back to bed for half a day. This time I got pretty worried and it definitely wasn't a pleasant feeling.

After that, for some reason, this thing went into remission for about a year until a couple months ago. Because it had gone away for so long, I totally forgot about it and never looked into it further.

A few months ago I experienced another nasty attack which brought back awful memories from a year ago... This time it was after eating an excellent cheese omelet loaded with salt. I laid down for a nap because I was so tired from not sleeping much the night before and thought I'd get a bit of rest before running errands. When I woke up from my nap, I immediately had an attack and stumbled around. This one was just as nasty as the previous ones with me praying to the Toliet God several times over (this guy must get lots of "gifts" from our group [Meniere's Discussion Group]. ;)

In all my previous attacks, I was able to bounce back rather rapidly and resume normal life. Not this time -- the attack was bad enough that it took nearly a week and a half to fully recuperate from it. I was dizzy, nauseous, and felt disoriented. All I wanted to do was lie down and sleep.

This was also the first time I got really scared about all this in the middle of the attack. I felt so helpless, and really confused. These attacks made me feel like I was on the abyss of nothing -- I was so disoriented that even when I closed my eyes, the spinning wouldn't stop. It seemed like the spinning would go on forever and ever. That was when I got scared and couldn't wait for my wife to get home from work (I work at home). It was just awful and really hit me emotionally and mentally.

I'm a *very* laid back fellow and wasn't used to these feelings -- I even cried a few tears during my predicament and was ashamed of that.

My memory about my earlier attacks returned, naturally.. I finally figured there must be something else to this so after I felt good enough, I plunged into the books and the internet to research all I could about my symptoms and what I could do about them.

My memory is vague at this stage in time -- I can't recall if I had another attack or not, but I do remember finally going to the doctor at the prodding of my wife (I hated doctors!). We went to a walk-in clinic. The doctor took a blood test and wanted to rule out diabetes (it was ruled out). He also questioned my emotional state -- he really seemed to think that was what it was but I told him I was very laid back and didn't let things get to me (sometimes to my loving wife's consternation! ;) He also removed some buildup of wax in my ears and finally just diagnosed me with "vertigo" and prescribed 25 tablets of meclizine for me to take whenever I had this problem.

To be frank, I wasn't entirely happly with his prognosis so I decided to take it upon myself to learn more about this.

After reading tons of material, it seemed that I fit the Meniere's profile although I wasn't entirely sure...

Unfortunately, I was also in the middle of starting up my own business and had a lot of other things going on so I didn't delve into the material as much as I should have at the time (I missed all the diet information, etc. -- I basically just read about the symptoms of various vestibular disorders, etc.) As a result, I wasn't aware of what I could do to curb this stuff such as change my diet, etc.

I didn't have any further attacks for three months -- this was even during the time we flew up to Illinois to vacation with lovely friends of ours and we rode all the roller coaster rides at Six Flags in St. Louis.

About a few weeks ago I had another attack, but this time I popped the meclizine and hustled right off to bed. This was the first time I didn't throw up from it, and I was really glad about that. Still, I was out of it for a week afterwards... This attack occurred after I ate/drank a bowl of Chicken Noodles (I think it has 43% of your daily RDA of salt!). Pow! I was out and down for the count in 30 minutes.

This was then when I started thinking about what I was eating -- the realization that I seemed to have attacks after consuming large quantities of salt dawned on my dense mind, finally. I went back to my research material and find out all about how salt affects some folks with Meniere's, etc. so I started cutting back on salt as much as I could.

I told my mom about all this and that I was also looking into herbal remedies. Told her about this promising herb called Gingko Bilboa and it was just my luck that she had some! She gave it to me and told me she was using it basically to lift her "brain fog" on occasion. Heh.

Problem was, I still had another attack a week later -- this time from eating unsalted popcorn loaded with margarine. I guess I thought the margarine wouldn't affect me but it did, and how! I was groggy and unstable for two weeks.

I remember thinking, "Holy batman! It's salt and now large amounts of butter or margarine!" So I started avoiding the yellow stuff as well.

Things seemed to go well for a couple weeks until had yet *another* attack, this time from rapid movement of my head when I got up from the chair. Fortunately, it went away after a few seconds. I got really scared though, as these attacks aren't pleasant which most of you know.

The gingko bilboa also really seems to help alleviate the severity of my attacks (along with the meclizine). I had also strictly controlled the amount of salt in my diet by then.

A week or so later, I had another attack, this time in the morning when I woke up from bed. It was from flipping over -- when I switch sides while sleeping, I flip over and it's pretty spectacular. It's also the first time rapid motion affected me and I was out for 8 hours.

This was a week ago as of today. I feel better now -- have increased my dose of ginkgo and it really helps. I only take the meclizine during attacks or if I feel one seriously coming on. I'm now very careful about rapid movements and especially about what I eat. I still get pretty nervous after finishing eating even if it's low in sodium because that's when I usually get attacks. It's kinda interesting how these attacks have "conditioned" me to almost fear eating but I love it too much to stop. :) I'm about 50 pounds overweight (I'm 6'2" and weight 245). Have lost about 5-6 pounds already.

Every now and then I still feel quesy but it generally goes away. Sometimes I feel tired all day. I went to the movies for the first time in a long time today and it went well.

I still live in fear of the attacks now... I'm constantly tilting my head from side to side to check things, and try to avoid anything that would upset my system too much.

This year has been my worst in terms of attacks so I am really looking forward to seeing a specialist in a couple of weeks and see if we can figure exactly what this is and perhaps help regulate it better than I am doing so far.

All this has been pretty confusing throughout -- a week before the soup incident, I had the same soup without any resulting attacks. Swift movements never bothered me before. I could eat anything without any problems earlier, etc. I've read that it is very hard to pin down the exact causes of Meniere's, and it's certainly true in my case although I'm pretty positive salt intake has something to do with it.

Emotionally, I'm better equipped to handle the attacks -- the ginkgo and meclizine really help and I've not barfed since. The attacks themselves are still pretty bad but they generally pass after 8 hours or so. Still, I hate the attacks and fear them greatly. Any mortal would, I'd think.

My mom did put it in good perspective for me, in a sense. She said, "All these years I've been trying to get you to watch your health and it seemed you'd never get around to it and now something like this forces you to be healthy, so it's a good thing in a way."

I apologize for being so long winded but I figured I'd spill the beans and get to know all of you and vice-versa. :)

With this, I have a couple of questions -- I'm flying out to go to the Sugar Bowl (my beloved Gators versus the Seminoles) as a Christmas gift from my Dad. Flying has never bothered me before, but since I'm probably still in a "sensitive" state, are there any precautions I can take? We fly out on the 1st in the morning and return the 3rd.

I'm more concerned about the affect the SuperDome may have on me since it's a big football stadium that's domed and will have lots of people. Fortunately with respect to noise I can turn my hearing aids off. I'm just concerned about the visual aspect of it. This is my first bowl trip in my life so I thought I'd make a go of it. I'll have a good supply of ginkgo to take with me. :)

Speaking of supplies -- I have about 8 meclizine pills left and read that you can get a non-prescription equilvalent (Bonine?) if needed -- what's the difference? Is it true you can get Bonine over the counter? I was thinking of going to the drug store and buying a bottle to take to New Orleans in case I have bad attacks.

[Meclizine hydrochloride is available over the counter in the U.S. as Bonine and Dramamine II (but not Dramamine). Always check the list of ingredients and the strength of the product, and consult your doctor. -- Ed.]

Thank you so much for your time and I look forward to being a part of this fine group! I also hope that all of us have a great New Year and that things will look up for us...

Silent Terror  

It sneaks... 

Slowly overtaking you 
You try to flee 

It creeps... 
You're chained to Mother Earth 

And she begins to spin 
Fear beckons... 

Your mind's in overdrive 
Screaming for God and Relief 

Swiftly tilting... 

It's time to pop the pills 
And pray that God is merciful 

Silent terror... 

Your ears scream  
Your heart cries 

All alone... 

It's just you...  
Nothing else 

Spin.. Spin... Spin... 

Nothing to do  
But lie... and cry