Meniere's Disease

Hydrops Meneires My T that hums it used to just come around every couple weeks and stay for 5 days. But it has been going strong for 22 days this time. It was driving me nuts. The vibration part was the worse. Headaches and neck pain. After I took the lipoflavnoids, I could tell it pushed it down. I could hear it but not as loud. Today, it is very low, almost unnoticeable. I developed a loud tone noise in my left ear in the last 2 weeks or so. But it even makes that sound quieter. Yea, my dizziness doesn't affect me too bad. But when I get up and move around it is more noticeable. My balance is off a little too. But no Vertigo or drop attacks thank goodness. When driving its not too bad, but it is hard for me to ride in a car. I'm ok, if I'm driving. Backseat is a HUGE no no. ha. I do get squeezing sensation in my head every now and then. I think it's kinda like a pressure change. It used to freak me out but now as much. Still weird. I have low frequency hearing loss in my left and some hearing loss in my right too.

 

@glynis

That is horrible. I can't believe they can't do better than that for you. Try the Valtrex it can't hurt.

 

It's funny you say that about your eye. My right eye does that. I'll go weeks with really low T, then out of nowhere my right eye starts jerking for several days with loud T, then the dizzy spells come. I was wondering if they were all related. Kinda off subject, have you ever tried Lipo-flavnoids? I just started and it seems to have lowered my T and helped with my dizziness. Was just curious what your take on them were.

 

Hi Gin,
No I have not tried them.
I'm just on Betahistine and Proclorperazine and lots of other medication daily.....lots of love glynis

 

I'm so glad I just saw this. My ENT suggested I get a intratympanic dexamthazone shot, but I read all kinds of horror stories. I heard it can increase your T up to 10xs worse or may cause you have vertigo. I don't have really bad vertigo attacks, mostly dizziness and naseau. I thought in my situation, the bad would outweigh the good. But this last round of loud T and dizziness has just had me on my breaking point. My ENT thought it would help with the dizziness and lower my T level. Did it do that for you? Is it incredibly painful? How do they determine how many rounds of shot you need? Sorry for all the questions. Just trying to gather as much info as I can.

 

@Gin

When did you start losing hearing? I haven't lost any yet but I'm scared. I'm already deaf in the other ear.

 

Not quite sure when. I know the hearing loss in my left ear is more recent than the right.

 

@Gin

Did your low tone keep getting louder every day or did it go up and down. Mine has been getting progressively louder every day. It's like a lawn mower in the distance that keeps moving closer and closer.

 

After nearly 9 months now I'm still going through all the symptoms there's been no let up, I'm already deaf in one ear and menieres started in my good ear last August with all the usual signs. Now about 6 weeks ago it appears to be affecting my deaf ear I go in cycles of about every 7-10 days , day 1 everything is at its worse full ear, earache, very off balance, tinnitus very loud, vision problems. Day 3 it lessens slightly until about day 7 or so when it all heightens again then after about 24-48 hours it all lessens then I get a bit of a rest bite again until the cycle re starts again.
The betahistine has lessened the vertigo attacks which has been a good thing, my good ears hearing goes through stages of being very sensitive hyperacusis or muffled with low sounds. The past 9 months have been a real nightmare as you can imagine especially losing my driving licence which my job relied on. 34 years of driving and a job I've done for 25 years out of the window. All very upsetting.

 

@Darren13

I'm so sorry to hear all of this. How do you know that it is affecting your deaf ear?

What have you tried so far? List all of it. Maybe someone will have a suggestion for something else to try.

 

Anybody want to start making a list of things to avoid or things they learned the hard way with Meniere's.

I can start. Getting dehydrated is a big one. I so easily get dehydrated even when I drink water all day long. I exercised before I went to bed last night. I thought I drank enough water but I woke up several times needing to drink more. It doesn't seem to help though. Once it starts it will take at least a day for me to be hydrated again. My T is louder and my ear hurts. We'll see what other fun things happen today.

 

Yes it has become louder. Just a loud hum that vibrates my head and back of my neck. The lipoFlavnoids seems to push the sound down after about an hour of taking them, but they seem to wear off at night. In the morning, the T is much louder.

 

@Gin

I was taking those before. I didn't think they helped much but who knows. I just ordered some more. Maybe they'll help.

I am going to be deaf soon. I am really scared. Is anyone else scared about this?

 

I do worry about loosing hearing with Menieres as it's hard already with tinnitus also.
So glad I have duel purpose hearing aids ....lots of love glynis

 

@Jkph75 my deaf ear was fine as far as I know at first but now it has the same problems as my good one at the same time. Fullness. Earache hot feeling, again unsure if it has tinnitus. When I mentioned it to my doc last visit he said there's a good chance, I'm off to see ENT again at some point so will be brining it up with them. I'm on the usual tablets and try to avoid salt and caffeine as much as possible and drink as much water as possible, I don't drink so didn't have to cut back there lol. I never have been able to socialise much due to my deaf ear and problems that brings with it in crowded places but now with menieres not only is it hard to socialise but just getting anywhere is a big problem, I can't drive any more so they gave me a free bus pass but often or not I get problems on the bus and have to get off before my stop. Also have problems being a passenger in any vehicle, nightmare really. My employers are now looking into early retirement or re deployment if they can find me anything suitable. And I'm only 50. I say only but that may seem old to some here lol.

 

Gin,

No...sadly the shots have not improved my T....It hasn't affected it either way. My tinnitus fluctuates wildly throughout the day, and drives me insane. I'm trying different anti-tinnitus programs in my hearing aids, but nothing has helped so far. When it gets intense, it gets intense, and so far...I just seem to have to wait it out.

The shots have helped decrease the intensity and frequency of my vertigo attacks. I wish I could say that it has eliminated them, but it hasn't. I don't find the injections to be painful at all. The doctor first smears a local anesthetic onto the eardrum (which isn't painful at all), we wait about 15 minutes, he vacuums it out and then administers the injection. I don't feel the needle, but I feel the drug going into my inner ear. It feels hot, to me. Sometimes I feel a little dizzy after the injection, but it just lasts a minute. They have me lie on my side for 10 minutes, and then I'm good to go.

In terms of how many rounds of injections: At the start, the doctor suggested we go with 4 injections: one every four weeks, and then determine if I can afford to go longer in between. I've had 6 injections so far. I didn't do so well waiting for 6 weeks, so I'm back on an every 4 week program. There are no negative cumulative effects, so there is no maximum number of injections. Everything is determined by your response to them.

In terms of things getting worse before they get better: I had my worst bout of vertigo (the one that hospitalized me), 4 days after my first injection. But after that, I experienced steady progress. It's tough to know whether to attribute that horrible episode to the shot, or to attribute it to the fact that the shot hadn't kicked in yet! I was so sick all the time, at that point.

With Gentamycin injections, not only are they ototoxic, but for 2 weeks afterwards, most people experience terrible vertigo. When discussing Gentamycin with me, the doctor said that I would have to understand that I would be "walking like a drunk" for 2 weeks, and that I would lose any hearing remaining in that ear. But when the anti-vertigo effects kick in, they usually kick in for 6 to 8 months at a stretch. I just can't go that route...I can't sign up for permanent hearing loss and 2 weeks of guaranteed vertigo. That said, there are patients who go to that clinic, who can't live without their Gentamycin shots.

Along with the shots, I also take Dyazide 37.5 mg, 2 tabs/day, and have gone salt free. I think that has made a difference, as well.

I wish you the best of luck!! It sounds like you're going through a rough time. It's scary when your tinnitus is crazy and you're dizzy or have vertigo, and you just don't know what to do. I hope I've given you some information that will help you make the decision that's right for you.

Take good care,
J

 

I would love to be 50 again!!! Lol!

 

It's not been a bundle of laughs being 50 so far lol. I got MD a month after my 50th birthday. Typical

 

I'm sorry....You're right...it mustn't seem so great. I guess I was thinking of how comparitively good I felt, 9 ½ years ago!! In no way am I minimizing the impact of MD on your life. It's been so life changing for me....and not in a good way.

Take good care. I hope yours is a slowly progressing course. I understand that some people have sieges, but that they can then go months or years without having another. And that people in their 70's and 80's rarely have episodes! So I just have to hang in there another 20 years! And you, 30! Sigh. It sucks....No other way to say it.

J

 

@Gin

I read some of your other posts and you were right. Our symptoms are very similar, except that my T never goes away. Sounded like there might be something in your neck causing your symptoms. I have neck problems and TMJ. On this theory, I took half of a muscle relaxer to see what it would do and it cut my T in half. I also noticed that my t is quietest after I get out of the shower. Today I put heat on my neck and that seemed to help too. I guess only time will tell if it's a coincidence or not.

 

No I didn't think you were minimising my MD lol. You have to look at it in a lighthearted away at times or you'd end up so depressed all the time and as we know that just makes matters all the worse. Losing my driving licence and now a possibility of my job are bad enough without all the MD symptoms ruining my days week in week out. Just hoping things settle down soon so I can get some sort of normality back, and get my life back on track again.

 

Thank you for being so kind and understanding! You are SO right about having to keep a sense of humor about things!! There are some days when I'm so muddled and confused from weird sensory input/output, misunderstanding what's being said, (and with my new eyesight problems, what's being read!), or during a vertigo hangover, that I stumble around like a batty old lady. I realize, from the feedback I get from family and friends, that I'm just "not getting it"....and I realize that I have 2 choices: depression or laughter. While in the company of others, I choose laughter; I find that it diffuses the tension and concern...and it makes me feel more hopeful!

Take good care...
J

 

JAJ
You sound like me I tend to laugh at everything it seems easier. My eye sight like yours is awful at times. I had them tested only 8 months ago and apart from needing reading glasses X1.5 at times all was fine, but with this Meniers there are days where my eyes do all sorts of weird things. I've at last plucked up some courage for once and asked for help today and I'm being registered as deaf and beginning to receive some help from social services, I've been to proud to do it until now but it's time to do so. After all I may lose all or part of my job soon. I was always on the hope things would improve enough for my return, each time saying next month then next month 9 later and I'm still saying it lol. I would never have thought that in the beginning. I first got the Virtigo spells about 4 years ago but it was just the Virtigo until last August then the rest kicked in and stayed. Then I found out people born deaf in one ear are 20-25% more likely to get a Menieres later in life. Well it happened to me. Just got to do the best I can I suppose and look on the brighter side that one day it will hopefully burn out.

 

@Darren13

You are not old, at least in my mind. No one thinks of not being able to do the things they want to do at only 50. It's funny that you mentioned not being able to socialize due to your deaf ear. I have never had any problems being deaf in one ear but I think it is because I was born this way. I also am deaf in my left ear. I read that people who are deaf in their right ear and/or are not born with single sided deafness have more difficulty. I am not sure why but it is interesting to me that it would make any difference. I have never even had any desire to hear out of it. Always seemed like it would be annoying. I really miss being able to roll over on my "good ear" for a peaceful night's sleep. Last time I did that I woke up with my tinnitus blaring and half my face was numb. The only thing that has worked for me has been Prednisone. I don't know if this would work for you since they can't see to decide what exactly I have but it might be worth a shot.

 

I was born deaf in my right ear which they found out I was at the age of 6/7 when I had my first school hearing test. it never really seemed to affect me apart from my balance was always off which made things like riding bikes etc very difficult to do and took me longer than other kids to do. Also drinking I was so much more unbalanced after just the odd drink that I never touched it again after the age of 19 it just wasn't worth it as it took the spinning feeling so long to settle down.
It was only when I entered my mid 40's that the Virtigo started for 6 weeks at a time spells, it would be an up to 48 Hour spell then come back the following week after about the 6 week spell it would go for about 6 months then return again and do the same thing. This happened for about 3 or 4 years and they said it was BPPV.
Then unfortunately last August all the classic signs of Menieres kicked in with it and has stayed with me ever since, not a day passes by without some problem, very unbalanced, tinnitus , sore aching ears, full ears, eye sight problems, very difficult to walk in the dark, Virtigo or dizziness, muffled sound and hyperacusis in the left good ear,'well not so good now" lol.
I always had problems socialising in loud busy places due to having to strain so much to hear that it just eventually made me feel tired and ill as it scrambled my brain out so much, it's even much worse now since the Menieres, to the point where I went to a pantomime and at the end of it I was escorted out the place by 2 people having to support me either side as I could stand up and walk unaided.
Anyway enough said lol. I'm doing the best I can to try to adapt to the symptoms as quick as possible now and try to get on the best I can with life, I've got 3 grandchildren between the ages of 6 and 10 and don't want to give up doing things and going out places with them, it's been difficult but I don't want to end up regretting not doing the best I can whilst I'm still young enough to do so.

 

@Darren13

That is really interesting. My Neurontologist said that congenital deafness is almost never accompanied by balance problems. Do you know why you were born deaf? Sounds like the underlying problem has been there all along. Did they ever try to learn more about your balance problems or treat it before?

We all must try to do what we can while we can. I have 2 babies to look after. I never even thought about not being able to take care of them or be healthy until now. Thinking about what the future might hold is too scary. I have never had a true vertigo attack. I can't imagine what would happen if I did and was alone with my kids. Then again. I might never have one, so worrying about it is pointless. I try to take it one day at a time, which is hard since that's not really my style lol.

 

@Jkph75
They could only guess that I was born deaf due to my mother having a 52 hour bad labour and the stress on me that would have caused, once born I was rushed off to an incubator and my first 48 hours of life was touch and go as I was born blue and hardly breathing. I really only remember firstly ecperiencibg balance problems once I attended school and couldn't do physical sports very well balance boards climbing frames etc, and I couldn't do rides in the parks that went round and round or up and down at speeds. Now since I've got menieres I'm unable to do most transport without great difficulty, cars aren't good it's the speed or going sound corners, busses aren't good too much chucking you around etc, trains aren't too bad as they are going in straight lines it's just the tunnels I'm wary of, I'm not sure about planes yet I'll leave that for now lol. So I'm unbalanced pretty much all the time now I probably stumble around and fell like I'm going to fall about 5-10 times a day I just make sure I'm not rushing and always have something to grab hold of if I feel like I'm about to fall into something or other. I suddenly don't feel like 50 any more more 80 lol

 

I went to my ENT yesterday. I told him the steriods, antibacterials, etc. did no good. But that I took some lipoflavnoids and they decreased the T ALOT, but usually wear off at night. However, I have had 2 nights where I woke up with silence. He said he was glad it worked for me but doesn't for most. Anyway, I told him the headaches and neck pain were killing me though. He started feeling around the neck area. He got to the base of my skull and touched a part that REALLY hurt. To make a long story short, I am referred to a Neurologist now. They think maybe Strained or torn Sternomastoid muscle or pinched nerve. Waiting on the neurologist to call to set up CT scans, etc. Well, needless to say the pain and not knowing has sent me into panic attacks. I've noticed some numbness in my hands and legs, which only adds to it. Really looking forward to getting this figured out.

 

Gin,

I hope you get to the bottom of everything, soon! I know how stressful it is to wait...

Take good care,
J

 

@Darren13

I am so sorry. Isn't there anymore that they can do for you? Do you get physical therapy? Did you try the steroid shots in your ear? I am praying for you. That is just so much to have to deal with.

@Gin

Hope you finally get some answers. Wish I could get some for myself.