Kicked in the head.. and other such fun stuff !!

Hello. I am new here, and as I type this, I feel waves of nausea overtaking me. My story may or may not be the same as anothers, but it feels very raw being me right now.

To start with, I have not YET been officially diagnosed with Meniere's disease. It is, at this stage, just a suggestion, nothing more. I discovered this quite by accident. About 7 years ago, I had a horrible incident that literally pinned me to my livingroom sofa for days. I could barely walk, and a train was running through my head, driving me out of my mind. Leading up to this, I literally felt like ending it all, just to make the noise stop. Doctors threw anti veritgo meds at me and told me to quit smoking. All this as I WEAVED my way back home, feeling worse with each step. On black iced sidewalks, in a busy downtown core, with people, lights and noise everywhere, this was no fun winter walk.

For years I have been complaining to physicians (plural) that I am feeling dizzy. About the only thing they did take seriously was that I was diagnosed with Tinnitus. I have learned to live with it, but man, is it wearing. Being a phone operator makes that buzzing a lot more annoying.

Fast forward to two past weeks leading up til today. Every other day, I am off work. I can't walk. I can't think. I can't stand or move. I blame my Beta Blocking blood pressure meds. After all, the bottle says a side effect is dizziness, so why complain!

Boss is accomodating, and I am feeling like a junkie, as I cannot focus on anything, I had to fight to stay awake in a training session for three days at work (I looked, I am sure, like someone stoned on Heroin battling conciousness). My eyes are losing focus, my head is nodding off, and I am dizzy.. and I mean DIZZY.

Roll that tape to this morning. I get up out of my bed, and am SLAMMED to the floor. I try to get back up, and that overwhelming dizzy spell hits again, this time, forcing me to spin into it to get back to my bed. I get there, and am holding on for dear life. Now I'm terrified. I thought I must have been starting a stroke or something. This is major. It takes a while, seemed like a month, to settle in enough so that I could maneuver my way downstairs. Ears are ringing, loud, but then, it's loud, and I usually just ignore it, so I am used to that stuff .

My head is soooo wobbly. I cannot make my legs do the right thing. I have to sit... a LOT. I finally go to the pharmacy, bring my meds, and ask why blood pressure meds would have this strong a side effect, all the while leaning on a cart for support.

There answer was immediate. Get to a doctor... PRONTO! They were the first to aknowledge this is ear related. I say to myself this can't be. I had my ears checked when I complained about the vertigo before, those trustworthy towers of healing insisted all was well, and if I drank less coffee (I have one cup a day, but at that time, never touched coffee) I could learn to live with Tinnitus... after all, Captain Kirk can, so can you. Don't fret it, no cure will ever be, but you can take comfort that someone famous with a dead cat on his head suffers right alongside you... great. Thanks Doc.

So.. I go to a clinic. Dr. sees me, listens, checks my blood pressure, looks very alarmed, find out that my meds are useless.. aaaarrg... then proceeds to tell me what was causing my dizziness and hot flashes.

My pills, my blood pressure, have nothing to do with it. Without even looking at my ears, he states that I have an inner ear virus (this doc does not know about the other symptoms I have been living with, so it's understandable he take a cautious approach), that crystals have formed and are shifting about, leaning on things in some inner ear labrynth, causing this, and that a couple of pills will fix me right up. He is ordering me to bed for a couple days.

I go back to my local Pharmacy, I get my pills, one is a tranqu. Ok, why?? Why do I need a pill that will make me dizzier? Then I read the other med's purpose for being, and read it is used for this disorder, Meniere's, something I have never heard of before. So curiousity had me google it, and man, I literally felt like I was punched in the stomach. I have been sobbing ever since.

It has a name. It's real. It is not my imagination. All these years of suffering, all these damned doctors telling me to go on a diet, and things would be great (when this started I was a trim 170 lbs.. so that theory can be scrapped, and I am not a fan of salt, so that is another one out the door). I read off all the symptoms, and realized I am suffering from ever single one of them. It was a checklist for how I feel every single day of my life.

Guess who's storming a doctors office tomorrow. I WANT ANSWERS.

I cannot say conclusively I am a person living with Meniere's. I can say that it is likely I will find out in the next little while that I am indeed suffering from this, and that there is treatment to help alleviate these awful spins.

When I was diagnosed with severe double Apnia three years ago, I felt vindicated. Everyone thought I was making it up. My sleep clinic kindly allowed me a copy of the tape made while I asphyxiated 57 times in one hour due to a physical and neurological disorder no one bothered to test me for. I made copies, and gave some to those *&%()(A^ ing doctors that made me feel like a hypochondriac during all my travails with that ailment. Doctors did the same thing then. They patted my hand, and sent me on my way... all the while, healthy organs are failing, healthy heart is failing for no known reason, 66 kidney stones passed in a year, cronic mood swings, violent at times, uncontrollable, constant headaches, stomach ailments, the list goes on...

Bottom line is.....if I am diagnosed, and I feel strongly I will be given an affirmitive based on the evidence thus far, I am hoping I can work through this with this group. I am still in shock from what I read, and what I know I am living through. I am still sobbing from rage and relief, and I am not a cryer, not by a longshot.

For those of you that might read this, thanks. I may be jumping the gun, perhaps I should wait for the official word, but I know in my gut that this is what I have been living with. I know it's got a name, and treatments. I guess I am asking for a little support during all this. I am kinda unable to stand up, literally, at this moment, as even the computer screen is moving, but am hoping someone can maybe help me put this into perspective.

Thanks for reading, if at all.

D.

 

Hello and welcome -

Whether you have Meniere's or not, you are welcome here. We will be here for you and help in any way we can.

As for me, you can read the summary in my signature below. I've managed to "live with it" for a long time without meds or surgery. I hope you have the same success.

BTW, here is a link that shows several things with similar symptoms:

http://www.menieres.org/jacki/jackis70.htm

Meniere's is difficult to dx because it can be so many other things. Good luck on your dx journey!

 

Welcome, we'll all be here waiting for you to get back from your trip to get the dx. We're here to help and offer any support we can. As you can see, Linda has lived with it for 31 years and I have for 20 and we're both still here posting so yes, life is tough but it does go on. Good Luck-- Loretta

 

Hi Linda. I like the Susan Hayward pic you chose. Any reason for that? She was a fun actress to watch work in films.

Thank you so much for the kind word. I looked at the site you linked, but honestly, nothing there seems to quite mate up with what I am feeling, even now. The tinnitus is a constant companion of mine, but when I hit into any vertigo mode, it amplifies. I am always dizzy, but have periods that I am stable enough to function without too much discomfort. Docs have repeatedly stuck things in my ears for a look nothing commented on except my hearing is dull, that I turn my bass too high on my stereo system (gf complains vigorously about that), that if someone talks in too shrill a tone, it cuts right through me to the point of being distracting in a mild situation, to painful, literally, in a regular situation. I am easily disoriented, I am having more and more difficulty reading, focusing, concentrating, even expressing myself as time goes on. I no longer want to walk anywhere, because that too has become a millstone around my neck. I get very aggravated with little noises, I can hear things clearly no one else seems to, but other things I cannot hear well at all. my head often feels filled with sloshing gel, and I more often than not suffer from hot flashes, especially around the head and eyes. I have to take my glasses off to strain my eyes to try to bring myself back to level ground when I start my "drifts". Those drifts will literally knock my head backwards like whiplash when I try to abort them. And I feel very gummed up when that happens. It is unpleasant, and stays with me for hours. I try to avoid walking when I get into those fuges.

It might well be something completely unrelated to this, and I know that only a fool would make a diagnosis based upon a google report or two. But I have been down this road before, and was proven right. I learned a long time back to listen to my instincts. The times I didn't, I paid for it. My instincts tell me this is what I have been dealing with. But I will let the docs decide that.

And thank you for making me feel welcome. I am feeling a little vulnerable right now, and am glad there is an online support system available.

Your livingroom looks great. Just the right amount of warmth.

Cheerz,

D.

 

Loretta... thank you so much. I will keep plugging with Doc tomorrow to find out his opinion on the suff I have read on, and see where it takes things. I appreciate the support. I really do. I felt pretty grim this evening when I walked out of the octors office, and all I wanted to so was crawl back to my car.... amazing I can still feel every spin from this morning on. Once I get into this mode, it sticks around, even in memory, for a long time.

 

Back about 25 years ago I was hit upside my head and it jump started my menieres.I lived with it for so long I just got used to it.I went to doctors that couldn't even tell me what was wrong till about 10 years ago I went to a walk in clinic and was refered to a neurologist and got alot of test done and finaly had a name to go with my symtems and was told it was menieres.I felt releaved and depressed at the same time.Hope you find out what is wrong and stay strong.David

 

I'll make this work. I am the proverbial cat.

But in truth, Bryant, I am worried about losing that much more of my good activity and project worth with this hanging over my head. It's going to rob me of my ability to drive, to function, to work on the bomber restorations I am currently asked to work with a project, and it is very imporatant that I know what's what. As it stands right this minute, even typing this text, my brain drops off,. my eyes lose focus, and I end up trying to do a simple thing, while keeping concious and focused. It is really hard to do this. I feel like I just lost an important part of myself to whatever this turns out to be.

 

It is possible to have both Meniere's and MAV (in other words, more than one thing), and that's what it sounds like to me. I say that because you mentioned "always being dizzy" and that's not typical of Meniere's.

----------------

About my avatar, I used to have a pic of Legolas from Lord of the Rings, but one of the guys on the forum joked with me about it and suggested I get something with a "real" female. When I was younger I had auburn hair, so I picked Susan Hayward. I liked her spunk, too.

 

Hi and welcome to the group

I'm a newbie too although I was diagnosed with menieres years ago. Because we moved to a different part of the country my new consultant is questioning the original diagnosis; I'm having an MRI scan at the end of January.

I could have written your post. A couple of years ago I noticed I couldn't walk as far as I used to, developed IBS, tinnitus 24/7. I'm a teacher and I was exhausted from the effort. Three months ago I felt as if I was hit by a train. Couldn't walk, dizzy all the time (not spinning tho), chronic fatigue, tinnitus and hearing worsened - my GP says I have fibromyalgia as well as whatever is going on in my inner ear. I know that fibro is often associated with sleep disorders.

I feel that I am making slow progress but am still pretty much in the dark about what's happening to me. Writing this is a bit of a struggle.

I just wanted to know you're not on this journey on your own.

best
Rosie

 

Welcome to the forum. As you seek out the right doc, you want to be referred to an inner ear specialist a neurotologist (note the "t") or an oto-nuerologist. Meniere's (MM for short) can't be seen be looking in your ears. They must run a number of tests to rule out every other possibility. The kinds of tests involved include MRI, CT Scan, ENG/VNG, ECOG, blood tests and balance tests.

Once you have a dx (diagnosis) if it's MM or a related disease ask the doc about Vestibular Rehab Therapy its a specialized from a physical therapy that can help you with the daily dizzies as well as gives you tools to speed up your recovery from future attacks. One warning about VRT it makes you worse before it makes you better.

The "Crystals" the doc was talking about is BPPV (benign paraxamal(sp?) positional vertigo). Major symptom of this is that vertigo happens when you change head or body positions. It is easily dx by a trained doc and can be easily treated. MM has treatments but there is no cure.

There is one thing you can do to help the docs dx you. You need to find what triggers your symptoms. Start a symptom journal.

Record:
When you eat
What you eat
What meds you take
When you take the meds
Your MM symptoms and changes thru the day (times)
Stress levels
Menstruation

Food allergies are a fairly common trigger for MM especially gluten (wheat & other grains) and dairy. If your symptoms usually get worse after eating the same type of meal then you can try eliminating that food from your diet. If you eliminate an allergen it should give you some relief with in a week or two at the most.

Common triggers:
Sodium
MSG
Stress
Fatigue
Wheat
Dairy

Less common but reported triggers:
Nicotine
Seasonal allergies
Hormones
Alcohol
Caffeine
Other inhalant allergies
Other food allergies
Weather
Sugar
NutraSweet

Good luck, Tracy

 

Just to let you know...we are here LIVING with this. Sometimes we get rolled by it, but we are still living, laughing, enjoying, finding joy, learning about what helps, what doesn't, and how to live with this. Hang out with us. You will find a lot of friends here, and much understanding. When everyone else in your life is saying "huh?" we will nod our heads and say, "uh-huh!", because we have been there. Welcome.

 

.

 

Hi

I could cut and paste your post and stick my name at the bottom. Fortunately, so far I've not hit the floor yet.

Been 7 weeks so far with some reasonable days between and just when I think I'm coming out of it - whack it gets me back - today's not a good one.

Out of 7 weeks I've had one day (yesterday) where I recognised the 'normal' me - but today I'm suffering for it.

I'm only on the suspect list at the moment - but had tests on Friday and still awaiting a dx from the consultant on 17th Jan. I did the same - read about it by refering to the leaflet with the pills and my GP said he suspected it was MM.

I am just now starting to recognise the warning signs and in a way accepted I cannot do much about it, I am not as scared as I was at first, and just know I have to wait it out. In a way, I'm coping with it better than I was. Read the post in the database about the stages we go through. It helped me understand the emotions I was experience - denial was my first stage - slightly into acceptance now. But like you I want answers and what I've learned from here that seems to take time.

So all I can say is hang on in there - you are not alone and you are not going off your trolley either!

Just look at my avatar and see what it's done to me - yesterday I thought I was relatively ok! Only joking just in case!

C

 

Well, this is wonderful. I woke this morning, late, as I am on sick day #1, and felt a little less paralyzed by the spins, but they are still a companion. Most days are like this, or lesser, sometimes I can almost feel vertigo free, unless I lean my head down then back up. That is trigger # 1 for me, but the easiest to deal with.

I see a peron named Chez in here with an avitar that I wish I could make out. It looks like fun. So other people have felt all this. But it sounds like maybe I am getting it worse in some ways (not a surprise for me, I am as strong and as healthy as an ox, but if something gets me, it is never a regular case of anything.... I am always treated to the super deeluxe versions of whatever medical mayham can be inflicted upon me...lucky guy, huh?) and I have learned to live and cope with the fun.

I read something that Linda posted about this being a dual issue. Could be, but that whole Migraine thing...nope. I don't suffer from migraines. I get headaches, but no auraus followed by debilitating spins and agonizing, blinding pain. I have a freind that suffers that way, and forutunately, not one of those symptoms inflict my life. Thank the Lord Jesus Christ for that. But that being said, when something does find me, I am usually the one to get the worst of it thrown at me. I sleep with a plastic alien strapped to my face every night, and if I ever forget to wear it, I pay a very high price for that oversite, so I have learned to just do what needs doing. I am sure, whatever Dr. finally ends up concluding, I will eventually start to feel better. I am not giving up my car. That is one thing I have firmly decided. I have to travel 70 km a day to commute, and it is just too hard to do this via bus (three hours each way). But I am going to need to get this under control before I kill myself, that's for sure. Good thing is, my head is stationalry in the car, and when I do need to rubberneck that blind spot, I can do it is such a controlled way that it actually doesn't seem to affect me. Also, I find the movement of the car kind of takes a little edge off the vertigo. Weird, but true. I LOVE that people recognize what's happening to me as to what is happening to them.

Even if, again, this does not turn out to be MM, it seems I found the right place to help me cope with this. But I gotta say that I will be very surprised if this is anything but MM.

My episodes for vertigo, to my credit, I don't get too too often. And I get them in different degrees. More often than not, I am moderately dizzy, but am fully able to cope. But on three occassions, each one worst than the last, spread over years, I get nailed, literally, to the floor, bed, what have you. I am a heavy duty allergy sufferer, and coupled with a breathing disorder, well, it's not a wonder. The rest of the time I am fine, able to cope with my days, dizziness is mild to almost non existant unless I move my head the wrong direction, which passes easily in a few minutes, or the worse one, I get into a fugue state, and my head will snap back, then I immediately try to snap it forward, and then I am in trouble. I get the sloshing brain feeling, and cannot correctly focus on anything. This one brings on some pretty nasty spins and headaches. It passes, though. Ladders. tops of chairs, bending down to see things, all these have become the enemy. My rides at the fair are now long behind me. Who needs Crack or a Joyride? This set of symptoms beats any of that, anyday.

Bottom line is that you all have been W O N D E R F U L... in your support. Some of you know just what I am living through right now. It makes me feel good to know there are kind people out there, willing to share, willing to talk, willing to help another put the peices back together. I really love what Pardonme and Thornapple had to say... about living with it. Once the shock wears off (the tears have stopped), I will, as I did with the Double Apnia, learn to cope, and then integrate it into my life. I read someplace that the worst thing a person could endure was cronic vertigo. Yes, it is pretty debilitating, agreed, but I am counting my blessings. I would think Chemotherapy, an amputation, losing one's child would feel a whole lot worse. I have healthcare coming out my ying yang, and I live in a country, that fortunately, has free health care (not free so much, but I will live with it) so my needs will be met. I think to what some Americans have to go through, and it makes my grateful every single day that I never have to cope with bieing put out on the curb because of lack of medical insurance.

I am truly blessed. As are all of us. Thank you so very much for sharing with me. Thanks for understanding, and for helping to start to sift through the rubble for the answers.

;D Kind people. It made a big difference.

D.

 

Hello D -

If you have apnea and allergies, that will complicate whatever else you have, including Meniere's.

Just so you know, migraines can be "silent." I'm not saying you have them or MAV, just FYI.

 

ok..I am not sure what a silent migraine is, admittedly, but you have a wealth of experience, unfortunately, learned through hard knocks. Least that is the way it seems to me. 31 years living with something would give you that. So I definitely am all ears and eyes when you post. I am going to bring this to the clinic ( I am leaving in approx. 1/2 hr to deal with this), have printed up all sorts of things, and will ask my questions, and hopefully, find an anwer that fits. The only thing I am certain of is that this is not a virus that is here, and will be gone. Unless it's AIDS or Ebola, or something like that, viruses ususally don't hang around for years. Your body fights them, or loses....the end.

It may have been triggered by a virus, but I suspect, very strongly, that they will find my allergies brought this on. My body has a history of manufacturing to many things, calcite, alcaline, skin oils, skin cells.. so manufacturing crystals to the point of overload would not surprise me in the least. A lifelong problem with my ears, nose and throat has led me to this point. I am convinced of this much. I'm the person no allergy pill will work on, no nasal treatment will respond to, so my body does it's thing, and I think this is the result fully realized of all these many years of living with the issues, cumulating into one big headache.

 

Well, I will defer to your knowledge. You certainly have a lot more of it than I do. I am bringing printouts to the office to have them take a look. See what they can see.

 

It's very possible you have Meniere's and your allergies aggravate the symptoms. That happens to many people. NurseMom is the first that comes to mind. Feel free to PM her.

Keep us posted.

 

Hi D

It's no good the real me has come out - I've blown the image up for you. It was how I felt this morning!!!

It is a photo of an age old British custom of Girning. A competition where people put a horse's yolk or whatever it is called and pull silly faces and the best face wins. Don't ask!!!

When I had my tests done and the audiologist was being cagey with me over what he thought it was and gave me a whole raft of different things which when you read them seem to have very similar symtoms. He mentioned MAV and said about the migraine bit - that some people say they don't have headaches, but migraine takes many forms. No expert though!

Think it's best at the moment to keep an open mind - which I am sure are doing.

Take pity on me - see what happened to me this morning - I didn't think I could look any worse!

C

 

LOL... that was toooo funny. A laugh I needed right about now. My little avitar is my South Park self. I had to modify him a bit to make it look more like me, but hopefully it will give people a chuck or two. Well, I gotta motor now, that clinic is calling out for my visit. Thanks for the positives. I really appreciate this, everyone. I needed it yesterday.