Chronic Dizziness Vs. Vertigo

Lyme test was negative.....now on Klonopin,

off meclizine and valium.

 

Hello,

I have just been diagnosed with Meniere's but not totally convinced it is the correct diagnosis. I have tinnitus, head fog (and other cognitive issues), dizziness (like being on a rocking boat), pressure/liquid feeling in my head. The dizziness is constant -- no attacks -- just dibilitating all the time. When I'm stressed all the symptoms get worse and my throat feels swollen.

A few years ago, I was told that my Eustation tube was inflamed and it caused Labrynthitis (sp). I'm not completely convinced it's either issue. I have been to neurologists, ent, opthmoneurologists, internists and allergists....No one could figure it out til I saw a Neuro-Otlogist who specializes in balance disorders. I just started a diuretic and Ear-Vite. He gave me Valium but that doesn't calm the symptoms but rather makes me tired. It's been six months now and I still can't work. I'm on psych meds to help my anxiety and it is working but the reality of my life is still making living very difficult. Does anyone have any recommendations

 

Hi Jonathans.

I see you live on the East Coast, so you have access to some of the best NeuroTologists. That's where you need to restart your quest for an answer.
Personally, I see some migraine activity in your symptoms and you can have both migraine and MM occurring at the same time.
Use the search button on this site for MAV and read a little about it.

Here is the migraine website for more information: http://www.mvertigo.org/

See if you library has "Heal your Headache 1-2-3 but Buckholtz. If not it's really cheap on Amazon.

Check out Timothy Hain's website, google his name. He does phone consultations and comes highly recommended. One of our members
GinaMC can give you more feedback on that, she used him this past fall and sounds like she might be having some positive results.
This won't go away overnight but with proper treatment you can get back into life, work, (some) social stuff.

Patience, it's very hard but can be done.
I know you are frustrated!!!

Be good to yourself,
Janine

 

Why not.......i will chime in as well.

I have been battling this crap for about 3 years. I had one vertigo attack to start it...........then left with the residuals:

1) Brain Fog
2) Motion intolerance
3) Very difficlt to concentrate (especially speaking to someone one on one)
4) Extreme Fatigue everyday
5) sometimes, i hear a whoosing sounds in my bad ear

I have 35 -45 % vestibular dysfunction in the left ear .............my right ear is perfect per testing.

I have tried VRT, MAV medicines, diuretics, low sodium diets, rubbing voo doo dolls (ha ha) and just about everyting else. I am constantly left with 24-7 feelings of what I describe above (in different severity levels)

I am going in for a gent procedure on my "bad ear" in 2 weeks to finally stop the bad signals being sent from that ear to my brain. I know this is risky...........buy my quality of life in the past 3 years is nearly non-existent.

Time for a change

Todd

 

LisaMarie

Glad to hear Lyme negative. Now, is the Klonopin working for your daily dizzies? It is not for me anymore and I refuse to go UP on it.

 

GOOD LUCK TODD, KEEP US POSTED! !!!!

 

Dear Kitty,
I am new to this website. I found it after a week of vertigo and throwing up, I have had the shunt sac surgery last spring. It did not relieve my dizziness or my vertigo. My doctor too suggested the genamycin shots. I have meniere's affecting my left ear. I am so afraid to do it because I understand I have a 50 percent chance of getting it bi-laterally. I am not sure if I loose my hearing due to the shots if I won't have to deal with it again on my right side. I have vertigo attacks irregularly, can't seem to pinpoint my trigger although I think it seems to be seasonal. Worse in fall and spring. But I too am dizzy much of the time. I have lost 65lbs. My hubby has shoulder problems and I was worried that if I fell and he had to pick me up then he would need surgery,he already had rotator cuff surgery and really needs it on the other shoulder. So I joined a pilates class and reached my weight loss goal. That has helped my wobbliness but has not helped my dizziness, I am dizzy at least 2 or 3 times a day. But very thankful that I don't have vertigo as often. I am so very glad to have found this website. I have tried to explain the extreme exhaustion to my husband and my kids, even making light of it and I know they don't understand. I am not complaining however, It has made me a better advocate for others with chronic illnesses. I know I now find out more about the illnesses my family goes through so I can be of help. Funny out adversity can bring out the best in us........at least on days when I am feeling good....lol.
I know this may not of answered your questions but I am taking a wait and see approach to the shots.......let me know if you do it and if it helps!!!
Carolyn

 

This thread has made me feel so much less insane. Thank you all so much for posting. I don't know if I have Meniere's or MAV (or both), but it is more comforting than I can express to know that other people might actually understand what I'm going through. Since my problems involve mostly issues of long-term dizziness over vertigo, I'll post my story here, too.

I'm a 32-year old female graduate student, in relatively bad shape (overweight by about 30 pounds), and not terribly active (I was for a while, but I let work and stress overwhelm me and have gained 40 pounds in 3 years). Over the last year and a half I have had a number of strange ear, balance and migraine issues, ranging from stapedial myoclonus in my left ear (at its worst, it sounds like a moth is trapped in there) to increased tinnitus and beeping in my right ear, along with a spate of a-typical (for me) migraines. By a-typical, I mean that I either never actually got a headache (just the aura), or that I never got the usual accompaniments/precursors to the migraine (so no aura, no stars, no nausea, just a horrible headache). I had also grown increasingly more sensitive to sound. The ENT put me on Xanax for the myoclonus last June (he assumed it was stress-related), and it tapered off a bit, so I stopped taking it after about a month. We moved from Southern California to the mountains of Arizona in August (a difference of about 7000 feet), so the fact that I had awful headaches after that was attributed to altitude sickness (utterly reasonable). I've also been feeling increasingly dumber and dumber, have an insanely difficult time concentrating, and my eyesight has deteriorated. I attributed those aspects to the fact that I'm trying to finish my dissertation and sit in front of the computer all day. "Everyone feels stupid writing! You can do it! Just press through!" Needless to say, my inability to "press through" and focus has been causing me a lot of stress and depression, so there's a bit of a chicken/egg question there.

In late October, I was suddenly hit with an attack of severe dizziness (not vertigo) that lasted several days and left me nauseated and barely able to stand. The dizziness continued to come on in waves, accompanied by a fullness and incredibly loud tinnitus in my right ear. On November 1st, that fullness failed to fade away as it had in the weeks before, and I was left effectively deaf in my right ear (this is still the case), with a persistent mild numbness over my entire head and neck and a bit in my right arm. The waves of dizziness continued, getting less and less severe over the next month and a half, until I had regained balance, more or less, completely. However, in mid February, I had another such attack, and I am still recovering from that one. I have only had one bout of vertigo (the second morning of my latest dizzy attack), but it only lasted for about 30 seconds or so.

The hearing in my left ear continues to be excellent (both of them were before), although it is still hypersensitive to sound, and I continue to have mild myoclonuses when exposed to certain pitches. Someone here mentioned tiny myoclonic spasms in the body: I have those, too -- usually in my eye, back thigh, or between my shoulder blades. I had one in my sternum that lasted for 2 days. That was fun. I have also started to get what I can only describe as electric shocks (with bright light) while I'm dozing or falling asleep. I don't know if those are related, but I'd never had them before. I certainly haven't been sleeping well, though.

Tumors, a large stroke, and MS have been ruled out through MRIs and MRAs, and the best guess the neurologists and ENTs could give me is that I am either experiencing migrainal attacks brought on by the trauma of an unverifiable, non-symptomatic viral infection in my inner ear (which, according to this theory, caused me to go deaf), or I have Meniere's disease.

I've been on a low sodium (>1000 mg a day) diet for a week now, and haven't seen any significant changes (though cutting caffeine has, of course, given me some nice run-of-the mill headaches). I tried some sessions with an alternative medicine guy (he did "drainage" and messed with my cranial plates), but that failed to have any effect on my balance (though the final session sparked a full-blown migraine that lasted for a day and a half - and that was with Maxalt). The neurologist who diagnosed migraines as the problem gave me some Valium, but I didn't notice any change in my balance when I took it (actually, I didn't notice any difference at all).

I can't express how grateful I am that all of these symptoms are actually relatively mild compared to what I could be experiencing: I still have the hearing in my left ear, don't suffer the kind of debilitating vertigo many of you have described (I've never lost consciousness, and the nausea hasn't been so bad that I've thrown up), and can mostly function (even if it feels like I've lost 50 IQ points), but this is all still upsetting and overwhelming, and I'm really frightened about losing the other ear. The "you randomly went deaf because of a virus you had when you felt healthy and now your migraines are being wiggy" theory sounds nice (and it would mean I don't have to worry about my left ear), except I was having weird hearing issues (but not balance issues) for about a year before that. Meniere's doesn't completely fit, either, since it also doesn't explain the numbness (it's very mild, as if I'd had a couple of glasses of wine), and while my dizziness is episodic, it's not vertiginous, and it lasts for months at a time, not days. What do you guys think? Does it still sound like Meniere's?

(Sorry for the wall of text: it's just a huge relief to tell this to people who might actually understand.)

 

Welcome!

It does not sound like Meniere's. It sounds more like MAV (Migraine Associated Vertigo) or something else...not sure about the numbness but I would certainly discuss that with my doctor. Chronic dizziness and numbness are not part of Meniere's, although it's possible you could have more than one thing going on.

Do you have allergies? Arizona seems to be a high allergy state. I would certainly check that.

Valium for migraines?? I would question that. Migraines are usually controlled by diet and other meds (see link below).

Here's some info about MAV:

http://www.menieresresources.org/Resources/HomePage?action=download&upname=MRIBrochure-MAV2.pdf

It could take a while to figure it out, so try to be patient and keep on plugging.

 

Thanks for the info, Linda.

The thing about the chronic dizziness is that non-vertiginous dizziness lasting for months on end is not part of the general description of either Meniere's or MAV, at least in most descriptions I've read, including the one you linked (it describes vertigo lasting usually a few hours, though sometimes as much as 24). What I'm experiencing is not vertigo (I don't see the room spin: everything looks ok, it just feels like I'm on a boat), and vertigo is one of the primary symptoms of both MM and MAV. Obviously asymptomatic versions of both ailments exist (one person in this thread, for example, said that she had dizziness for years before her first full-blown vertigo attacks), so I'm trying to narrow down which of the two diagnoses I've been given is most likely, given my other symptoms (so I can try going through the myriad treatment regimens), although I'm hoping that maybe somebody will have heard of some bizarre third option that fits everything...

A straight diagnosis of migraine-associated dizziness doesn't explain the hearing issues (it's not just that I've gone deaf in one ear -- I had weird symptoms in both ears for over a year before my sudden acute hearing loss), which is why the ENT went with Meniere's even though I'm not really suffering from vertigo (in his words, "that's as good of an explanation as any, since nothing fits all your symptoms"). And neither Meniere's nor MAV explain the odd numbness. That's not really that big of a deal, but it's strange, came on the same day as my hearing loss, and doesn't really fit with anything else. And while I suppose that allergies could be an issue, I've never really been prone to them, and outdoor ones don't seem terribly likely to me: I was having the (non balance-related) ear issues before we moved, and most of my biggest problems have come on during the winter months.

Oh, and the valium was for the dizziness, he said (and I looked it up as soon as I got home: while not a common rx for dizziness, it's been shown to have positive balance effects for some people with MAV). I already had Maxalt, which he recommended for actual headaches, and he gave me Verapamil as a preventative to take every day starting in a few months if things don't get better. Right now I'm taking none of the above so I can see if the dietary changes are making any difference.

What I wouldn't give to walk into the free clinic at the fictional version of Princeton-Plainsboro Hospital that has Dr. House, have him call me an idiot and diagnose me in 2 minutes. :-\

 

I have been diagnosed with MAV and I have had vertigo exactly one time in the last ten years, and dizziness lasting for months. And it really IS migraine. AND I am going deaf in one ear, and all kinds of other things you describe, and it's from migraine. The therapeutic dose for verapimil for MAV is 240 a day.

 

Wobblyjess,
You need to get this book written by a migraine neruologist specialist from the Johns Hopkins University. "Heal Your Headache", by David Buchholz. Here's some excerpts from the book...

"Migraine can affect the inner ear so as to produce auditory symptoms, including tinnitus (ringing, buzzing or some other noise in the ear) and muffled hearing. Even sudden hearing loss can occur. Again, these auditory symptoms, as with all neurological symptoms of migraine, can me momentary or prolonged, and may occur alone or in concert with headache and other symptoms. Phonophobia, or sensitivity to loud noise, is another auditory symptom of migraine."

"Not only is the term "migraine" misleading when it's used to designate one specific type of headache, but even the term "headache" is inadequate to cover the full spectrum of discomfort generated by the migraine mechanism. Discomfort may be felt anywhere in or around the face or neck as well as the head. Words such as "ache" and "pain" may not even begin to capture the discomfort you feel as a result of migraine.

Instead, in or around your head you may experience pressure, fullness, tightness, heaviness, thickness, numbness or soreness, or you may have swelling, burning, buzzing, vibrating, boring, piercing, drawing, expanding, tingling, trickling, bubbling, crawling, shifting, or rushing sensations. These sensations may be aggravated by bending over, straining, sneezing, coughing or exertion, or if you shake or jar your head.

You may have feelings suggestive more of lack of clarity than discomfort, such as cloudiness, dullness, fogginess, or fuzzy-headedness. Discomfort may be excrutiating, trivial, or anything inbetween...The severe headaches conventionally labeled "migraines" occupy a relatively narrow band at the far end of the spectrum."

""Migraine produces swelling of blood vessels in mucous membranes around your head and gives rise to congestion and discomfort that not only are misdiagnosed as sinus headache but also can affect the ears. The eustachian tubes, which connect the middle ear with the back of the nose, are lined with mucous membranes. If migraine causes blood vessels in these mucous membranes to swell, resulting in engorgement of the mucous membranes, the eustachian tubes can become blocked. The result is ear discomfort: fullness, stuffiness, pressure and pain."

I have MAV, and in it's untreated fury I went deaf as a door post in one ear. It cleared up when ID'ed my triggers and made changes. My dizziness went away except when exposed to triggers. Unfortunately my tinnitus is still with me but it has lessened to where I don't even notice it most of the time unless I specifically think about it.

I seriously highly recommend that book. Start with page 1. You'll be surprised what all migraine can do. BTW, I don't get classic migraine related headaches. I was misled for many years not understanding that migraine is a disease, not a headache.

P.S. For me my triggers are more about food additives and very few whole food products. My biggest baddest offenders are airborne...Most people overlook this one...fragrances of all kinds (personal care items, perfumed anything, room deodorizers, scented fabric softeners, scented candles even if not burning, etc), chemical smells and mists of all kinds (nail polish and removers, cleaners, fresh gas fumes, exhaust, woodworking products, paints, oil-based and solvent-based products, etc), new materials that are off-gassing odors (such as new leather, vinyl, and plastics, new carpets and pads, new electronics, etc), dust, dustmites, animal dander and fur, smoke-any kind, plants in the home growing mold spores in the dirt even though I can't see them, pollens, pretty much anything that is in the air that isn't air. And it isn't just odors either, but off-gassing from items that may not have an odor at all (formaldehyde products, welding fumes on hubby's clothing, new electronics, etc)

 

I've ordered that book, Burd: thank you.
And Thornapple: are you taking verapamil? If so, have you had any side effects? I started taking it a few days ago, and I've been waking up insanely woozy with even worse dizziness and pretty bad headaches. I'm sure it's the drug, but I'm hoping my body will adjust...

I also just made an appointment with a migraine specialist: I'm a bit annoyed that my neurologist, who is supposed to be "one of the best" balance disorder specialists in the state, didn't know that numbness was often associated with MAV/MAD (I did a lot more reading since I made that last post, and found a pretty perfect description of my "numbness" in one of the more lengthy discussions of MAV). He also asserted very forcefully that migraines don't cause sudden onset hearing loss/deafness (which is why he went with the theory of the stealthy virus). At least he knew about MAV, though.

So I'm now on a complete elimination diet (my husband joked that we're on a hunter/gatherer diet), and we'll see if we can find out what's been causing this constant dizziness: I've actually been a lot worse the last few days (I fell bringing in the groceries), so something's causing this. It's a lot worse in the mornings and evenings, but even when it's not so bad, I still have to watch where I'm going so that I don't run into things. After 5 months of complete deafness, though, I've got little hope of recovering my hearing, even if I do find the source: the odds that I don't have cell death are pretty minuscule. At this point all I'm looking for is basic function and to protect my good left ear.

I'm trying to think of any environmental factors that could be causing this, but if the WHOLE experience over the last year and a half has been brought on by migraines, that doesn't seem very likely: I don't use strong smelling detergents (and while I'm very sensitive to smell, I haven't noticed my symptoms getting worse around certain scents -- I'll pay better attention, though) and we moved from one environment to another, so the odds that it's something outdoors seem slim (especially since it's the snowy winter months here).

I've had migraines since I started puberty, though the headaches tapered off into adulthood. This past year, however, I've had more full-blown migraine headaches than in the past 10 combined. If it actually is possible that migraines could cause all of my hearing symptoms (including permanent unilateral deafness), then yeah, it really does seem pretty likely that this is MAD. Thanks guys!

 

Don't rule out environmental as it turned out to be my biggest factor in getting progressively ill for a couple of years before I had my first vertigo attack.  The first things I noticed and targetted was dust and dustmites, big ones and something everyone deals with.  Bedding, carpet, furniture is innundated with the stuff no matter how clean you keep your house.

And don't give up on your ear.  Mine went stone deaf after a 6 month or so downgrade into hearing hell.  There remains a tiny bit of residual damage.  After attacking the dust and dustmite problem at home, I started noticing improvement pretty much right away, and it continued getting better and clearing up for a few months until it got good again as other offenders were becoming obvious to me and I addressed them. I was shocked as I didn't know to expect that to turn around.  My fingers are crossed for you.

 

Joyce,
I am glad for your post actually. I am the least stressed person I know, no anxiety or depression. But I sometimes say I feel "dizzy", but I really relate it to balance and fatigue. Which I know most of us experience. I am glad you shared your experience. I think they will validate many people who have a hard time putting into words what their bodies are experiencing. I think dizzy is just the closest thing we can describe.
Dizzykitty,
I hope this and Joyce's post adds some clarity.

 

Thanks for the encouragement, Burd: How did you get rid of the dust mite problem if you can't clean them away?

I'm not noticing any improvement with my diet changes (in fact, it's much worse today), so I'll broaden my search (while sticking with the diet, just in case it'll take a while to make a difference). I'm also starting to wonder if it's not related in some way to my menstrual cycle (if so, greeeeat. How am I supposed to fix that?). It's really frustrating to make so many drastic changes and have things get worse, not better, but I'm not giving up hope. It's also great to hear that you got your hearing back. The doctors said the odds of permanent cell damage after 5 months of deafness are pretty high, but it's great to know there's hope.

 

I think I'd consider mine Chronic Dizziness. It's hard to tell if I have a vertigo attack at times. The world will spin for a moment, I'll sway and then go "...WTH?" Most of the time, though, it's like that little song from Finding Nemo and everything just "keeps on swimming, keeps on swimming, swimming, swimming."

 

My story began about 10 years ago when I started experiencing stabbing pain and fullness in my ear and kept on going to the doctor thinking that I had an ear infection. There was a constant buzzing noise in my ear and I felt dizzy alot of the time. The doctor took some blood tests and ruled out some mineral deficiencies or anemia. I was sent to an ENT who performed a few tests on me and finally determined that I had a mild case of menieres with a 30% hearing loss in my right ear. It was a relief to put a name to what was going on with my body. Over the years, it has stayed at bay with flare ups several months apart until just recently. I have been experiencing a major stress load which has caused my menieres to rear its ugly head. It got to the point where someone from work had to take me to the doctor because I could barely walk, felt faint and very vulnerable. It is a horrible feeling! I have never gotten to the point where I have fallen or had a major problem with vomiting (hate to vomit...can will myself out of that). It makes you feel like you are 80 years old.

 

I have an update on the short term memory loss. It seems it's Diphenhydramine. yes, that night-time decongestant that also helps you sleep. Well my neurologist told me she had been to a seminar warning that it builds up in your system, especially in older adults (I'm 48) over time and causes...short term memory loss! I went off it completely in May, and my short term memory is much better now. Not as much of the forgetting something seconds later.

I was also told it has a very long half-life, it stays in your systems for about 11 days! the seminar she attended said it was poison long term. They now advise no one over 50 to be taking it. I wish this would be come public knowledge!

Are you ready????, I had been taking two per night for about 10-20 years!