Meinere's

[seaboardbc]

Morgan,

I decided to start a new thread for Meniere's.

I think that I might have had a Baer test. My ENT said in order to give a definitive diagnosis of Meniere's I need to have 3 hearing tests that are different from each other in either direction. He said that I did exhibit all of the classical signs of it down to how I described what happen to me (I had never even heard of it). I have hearing loss in my left ear. I also have horrible shrill ringing in my left ear.

He gave me 3 different meds to keep with me me in case it happens again. The episode that sent me to the ER lasted about 5 days. I've had minor episodes since but nothing that would hold a candle to that one. Is there any connection between POTS and Meniere's? It's ridiculus, how many differnet things can be wrong with one person?!!!

So if anyone out there has info on Meniere's, I would love to hear about it.

Thanks

Bren

[MightyMouse]

You might try searching the forum for this topic, which I think has been discussed in the past. Also, consider searching on the NDRF forum as I'm CERTAIN it's come up there before.

Nina

[Susan Lake]

I was diagnosed with Menieres in 2000. I gradually got much worse and went to the Cleveland Clinic in 2003. I did not have Menieres, I was diagnosed with POTS. I asked at the time if they were related and my cardio said no? I never had any hearing loss so it was hard to believe it was Menieres. As you know with Menieres the idea of treatment is much different. I was placed on diuretics for years with menieres and a 1500 mg or less a day of salt. Lots of water to flush out any salt. With POTS it is the opposite, lots of salt and NO diuretics. I think I got much worse during that time just with the low salt diet.

I don't think that probably helped much!? I am sorry your having a hard time with your Menieres. Hope you find all the answers you are looking for.

Susan

[Sophia3]

I have all the symptoms of Meniere's except the hearing loss...so my doc gave me a quick dx of BPPV Benign positional vertigo (forget the other word)

He gave me exercises to look up on the net to do that initialy made me feel MUCH WORSE!! but then helped. I was willing to do this and it helped. He said I have the classic symptoms of this and 'rocks in my head'. Meaning, I have calcium deposits in my inner ear that need to be re-arranged. And the exercises do help.

This site here is aimed at eye doctors but gives lots of info.

http://www.opt.pacificu.edu/ce/catalog/COPE7282/Dizzy.html

My ANS doc (internal med endocrine specialist) diagnosed my constant intermittent vertigo bouts by having me do this exercise. He had me lie on exam table and hang head over the side looking at floor. Then quick sit up and I think I follow his finger...I got so lightheaded and dizzy and ill feeling. He grinned and said "I swear you are turning a little green". He checked my hearing holding his wristwatch at different spaces from my ears. (I have hearing like a dog but also the shrill constant tinnitus) So he said "technically" you have to have the hearing loss for Meniere's, but I have the other symptoms for sure.

Years ago some ENT "specialist" gave me some hearing test and a white noise test to check the brainstem area (for possible tumor maybe, I forget) THEIR idea of checking my balance was walking toe to heel in straight line. My doc said that didnt' mean squat if I was having a decent day or it wasn't a trigger of the vertigo.

But exercises can help in many cases but seek your doctors advice. I can NOT handle motion sickness meds and could NEVER EVER handle amusement park rides and get car sick easier the worse my POTS has gotten.

Hope this helps more than it confounds.

Sophia

P.S. the Brandt daroff exercises on this page help. You sit then lie on side with head slanted towards ceiling. This site explains BPPV. WARNING, this exercise triggers severe vertigo and nausea but TRUST ME it gets better and has helped "Me".

http://www.tchain.com/otoneurology/disorders/bppv/bppv.html

[morgan617]

Bren, I go to a specialist for my meneires and didn't have hearing loss for a long time. There are a couple of different types. The classical hearing loss type and a type called vestibular hydrops. typically not a big hearing loss, just the wonderful vertigo and hurls. Episodes can last hours , days , or just minutes that feel like hours. Until about 1995, they didn't have any difinitive tests for meneires, so we just assumed that's what it was. There's a caloric testing that may be the one I had. I'm sorry, I just can't remember the name of it, but it is a definintive test for meneires. Hearing tests are not very affective as your hearing can wax and wane, and if you are tested on an okay day, it will be an incorrect thing. People can go for long times in between attacks or have several a day. And that can change too. The difference between benign positional vertigo and meneires is that bpv will only affect you if you are in certain positions. It depends on where the little chunk of calcium is. Typically they can lie you on your back and turn your head a certain way over the edge of a table and within 15 seconds you'll be whirling. and if you are me, hurling. With meneires, no position is good or bad. The attack just happens for no apparent reason. I have had the exercises for bpv because I had it in my left ear, besides having meneires in that ear. I couldn't sleep on my right side without getting vertigo, and it helped quite a bit. But nothing helps my meneires when it decides to hit. The problem as stated above is that salt, caffeine, and many things pots people need, exacerbate the disease. And some people don't distinguish between vertigo, true spinning of the room or you and dizziness, which is the feeling that everything is just off. There is quite a difference. I have no trouble differentiating my pots dizziness and my meneires vertigo. I do know for sure there is a test for it, and it's not a hearing test and it's definitive. If your doctor doesn't know what it is let me know, I will give my doc a call and get the name. I tried the diuretics as that's the first line of treatment, but they about killed me off. I have been on steroids for it and now just take valium, which is the drug of choice. It's a very low dose, but very effective. Anyway, I am just rambling on. You do not have to be having an attack or a hearing loss for this test to be effective. So that's the route I would go. I hope this helps. I know a ton about this disease and that it really blows, so if you have any questions, please feel free to ask, or I see people have posted sites. One of the problems with the sites however, is they only really discuss the classical hearing loss type, so it's not as comprehensive as it could be. morgan

[morgan617]

sorry, meneires is an autoimmune disease, so I would suppose it would fit with pots as it could be autoimmune and most of us have some autoimmune components. I have constant tinnitus and have a fan in my room at night for white noise. I find if I eat too much salt, or any caffeine, it will almost always trigger an attack.

that's the big conundrum of having a disease where you can't have salt and one where you need it. I hate my body....morgan

[morgan617]

Bren, I called my ENT this morning as it was driving me crazy. The test is ECoG. It stands for electocochleography. Not sure it's how it's spelled but the initials are correct. It has nothing to do with hearing. It's a nerve type test I believe that is about the relationship between the sounds and the way the nerves react, specifically the eighth cranial nerve. The results are in percentages and anything above 35% is considered positive for meneires. Hope this helps. The sooner you get diagnosed the better. It could well be bpv, or labrynthitis, but a diagnoses of meneires will assure your disability. It is more disabling to me than my oi at times. Good luck! morgan

[yogini]

I was diagnosed with POTS in March of 2004. In May I started feeling like the ground was moving up and down or tilting when I was walking and was diagnosed with vestibular neuritis (inner ear disorder) in June. My doctors said the dizziness could not be POTS related because my BP and HR were in the "normal range" I had the 3 ear tests mentioned in the posts and the ENG came back abnormal (ENG, ECog and I can't remember the third). I had also a hearning test, but did not have any hearing loss. So I went to 3 months of vestibular rehabilitation physcical therapy (no drugs, thank goodness). Therapy was awful at first, and then it got better to the point where the dizziness was completely gone.

But then my POTS doctor told me to reduce my florinef and the dizziness came back again full swing. That's when my doctors figured out that the dizziness was POTS, because vestibular neuritis is supposed get to better with time and does not come back.

I have since learned that many dysautonomia patients have balance/vestibular problems similar to mine. That being said, it is definitely possible to have both POTS and an inner ear disorder, like Morgan. If you think you have Meniere's getting tested is a good idea.

By the way, here is something from Chris Calder's website which might be helpful (wish I'd known about this last year!):

"Most POTS patients have poor balance, which may be caused by decreased blood flow to the brain and other disturbances in the vestibular system. The patent's root neurological damage may also cause balance problems directly as well as causing the debilitating symptom of orthostatic intolerance. Patients are often unable to pass a drunk test by walking with one foot placed directly in front of the other. An abnormal gait is common. Patients may walk with legs wide apart and feet flared out to the sides as an instinctive adaptive response to increase their stability."

[morgan617]

My doctor told me one of the first places in the brain area to lose circulation is in the inner ear because it's so tiny, so that would certainly explain the lack of balance and dizziness associated with poor blood flow to the brain. The result of pots. It's so hard to tell, sometimes, because their are so many causes of some of these things and sometimes the only way to find out is to rule out. Regardless, neither is great, because there's not a lot you can do for either. I wouldn't wish these things on the devil himself....morgan

[seaboardbc]

Thank you everyone for all of your replies.

Morgan,

I have had a few different tests so I'll call my ENT and find out which ones and ask him to do the one you mentioned, if he hasn't done it yet. I would just like to figure out what is causing it so that it can hopefully be treated. I would like to describe what happens to me and see if it sounds like what happens to you.

First of all, it hits me like a truck. I feel like I just got off a boat ride from **** and literally I can't tell which end is up. I will lower myself to the ground because I'm afraid that if I don't I'll fall over because I can't even tell if my feet are on the floor. Changing positions doesn't help at all, it just makes me feel safer if I am laying down. I lie on the floor because I'm afraid that I will fall out of bed. Closing my eyes doesn't make a noticeable difference in how I feel. When I was in the ER I couldn't follow the light that the ER doc was shining at me. Does this sound like one of your episodes?

Thanks

Bren

PS I don't take Florinef

[morgan617]

Very similar! Once I drove to work and got out of my car and it was like someone had hit me with a brick. I had to crawl to the stairs and down them and was hanging on to a sign post until two nurses came along and carried me into the ER. They hit me very fast, the room spins around and rocks up and down. So it's like being in a rocking boat stuck in a whirlpool. I get completely disoriented. I can't even move my eyes without it getting worse. I have more trouble lying down, I will crawl into the bedroom because I can't tell up from down and will fall if i stand. I sit on my bed and stare at a blank spot on the wall, and try not to really focus my eyes. I just keep a bucket under my chin. If I have to go to the bathroom, I have to crawl or my husband or son has to help me, because I walk like I'm on that stupid boat trying to keep my balance. It is worse if I close my eyes or if I am in a dark room. If I lie flat, it feels like the bed is going to fling me off of it, like it's a live thing. It's really indescribible (sp) how awful it is. There is no aura, no sense that it's coming, it's just there. I also have nystagmus. That's when if you move your eyes to the right or left or up or down, they jiggle uncontollably. Did they check you for that? So really it's pretty similar. I'm not sure the positons we get in matter, it's just that you can't move after you get there. When I have an attack I will attempt to take some valium between vomits and if I manage to hold it down, it will decrease the time of my attack. They average about 5-6 hours, but i will have what I call "aftershocks" for a couple of weeks afterwards, where I will have frequent little bouts of them. I may or may not get a full feeling or worse tinnitus in whichever ear is acting up. This is very very different than the pots dizziness I get. I keep a night lite on at night, my house is never dark as it will always give me vertigo. The exercises I did for bpv did help that, but it will not help meneires. It is however a good thing to rule out and very easy to do so. I only had symptoms when she turned my head to the left. I was fine when she turned it to the right, even though my meneires until recently had been worse in my right ear. So there are several things they can check for. There are special therapists who work with bpv, but there's just so much they can do for meneires. Does this help? I will say I have had problems my entire life with vertigo. No rides at the fair, carsickness etc. I would definitely have them do the positional moves, and an ECoG. Good luck, and watch for those aftershocks! morgan P.S. I quit driving due to this as it can hit with no warning. That was a hard one, but a no brainer.

[morgan617]

ps, I don't take florinef either, and I get so disoriented I can't remember them asking me to follow a light. Once in his office, he had me shake my head side to side really fast for 15 seconds and then stare at his nose. I got so sick my eyes got stuck in this downward position and I didn''t remember what he had asked me to do. It was awful. He said he wouldn't ask me to do that one again. morgan

[Sophia3]

Morgan and others,

Morgan it sounds like you have almost a constant case of what I am only an intermmitent sufferer of..BUT my periods can trigger this too. Sometimes, I wake up and it feels like my bed is kind of moving...as if I am on a boat.

**BTW, a friend of my sisters, has a wife who has Menieres though she has gone on 50 cruises over the years!!?? Do you believe one can DO CRUISES with this illness?? I do not, but I digress**

I agree the exact dx is tough. Morgan, have you ever had the nerve to try a BALANCE disorders clinic? I have thought about it but my doc is such a believer in my situation and KNOWS my med sensitivity I have hesitated to go. Especially since my case isn't as chronic as yours.

THAT SAID< I am always on the verge of dizzieness. Rarely take elevators when out but they can trigger this sensation. Riding in back of car of course or even side car or even driving so I don't drive on those days, OBVIOUSLY. I once walked on a floating dock decades ago and got instant motion sickness and the others iin my group couldn't believe it. Same with floating restaurants....took that OTC antinausea med and just felt groggy but hated the sensation.

Morgan, that is interesting about lying in some positions. When I lie on my right side, I am can fall asleep easier usually (even with my chronic insomnia and need for klonopn) I never tied that to the rocks in ears , inner ear deal. Interesting what we learn from each other.

Also, I guess it's a no brainer that dry sinuses triggers all this "off balance" sensation. We have had the furnace on a lot and my room is drier than rest of the house. I just changed the filter and it was charcoal in color after two months. Lot s of cold weather here....My room is built over crawlspace, rest of house over basement. I just got some saline spray and took a shower (which made me feel worse but I hope helps sinuses) I also was dehydrated the other day when I realized I hadn't emptied my bladder in about 6 hours (LONG TIME FOR ME unless taking DDAVP and still pee more than that on the med unless asleep) My lips were chapped and the next morning, when I blew my nose, things were pink or bright red. My urine was dark which rarely happens unless I am feverish.

Gross but a first for me. Even when I had sinus infections once never had THIS much blood.

So anyway, I have thought about balance clinic but figured they would give similar exercises found on net and way too many drugs. I find xanax helps me some tho my doc said Valium is drug of choice but siince I use xanas for some other stuff, to pop one to see if it helps. YEARS ago valium made me mean and cranky where xanax does nothing to me.

Sorry, didn't mean to prattle on. Hard to absorb a long post. At least for my Swiss cheese brain.

Anybody that has this vertigo CONSTANTLY has my sympathy...I do wonder if they others notice a difference during period or ovulation. Is there anything fluctuating hormones DON't aggravate??.

[Jersey Girl]

I had really bad vertigo on top of the tachycardia and blood pressure instability when I was first ill with POTS (but not diagnosed as such). I subsequently failed an ENG test and had vestibular rehabilitation therapy for 6 weeks. When I went back to the vestibular doctor for followup, he said I didn't have a vestibular problem but didn't know what it was. My dizziness is still worsened by my period and ovulation but I was told at NIH that it is because of the extra adrenaline that is released at these times of the month. That is why the Xanax helps me as well because it counteracts the effects of the extra adrenaline. I had pain in my left ear but the ear specialist I saw said I had a normal exam. Martha

[morgan617]

They don't have any balance disorders clinics in this area that I'm aware of. Just people who deal with bpv and they are in physical therapy clinics. And I can't believe this woman has gone on cruises either!!!! I wouldn't if my life depended on it! I think if xanax works, then that's great. I find the same with the valium. It doesn't seem to have any affect on me, one of the very few drugs that don't, so if xanax helps, go for it. I wouldn't do any of the exercises without supervision. They are not complicated, but they did hurt my neck and you really should have someone supporting it the whole time. I have ear pain all the time too. It's caused by irritation of the nerve, so it feels like an ear infection, but the exam is normal. I wear a little bite block thing on my front teeth at night when it gets bad, to prevent grinding, which is a major cause of the irritation. Your dentist can make one for you for about 100 bucks and it really helps with ear and teeth pain. It's called an NTI. morgan