Meniere's Disease

[Jkph75]

Yes, I have fullness in my ear which fluctuates. Maybe that means my hearing is fluctuating. It's hard to tell since the tinnitus is so loud. I have been dizzy. At first I thought it was just anxiety but then in the car yesterday I got motion sickness which doesn't normally happen to me. I have been nauseated which started being worse yesterday too. Last night while lying in bed, my tinnitus started screaming. It lasted for a few minutes, I felt sort of dizzy and more nauseated. Then, it went down to the level it has been at. I realized this has happened a couple other times this week where it woke me up out of a sleep. I thought it was just the tinnitus waking me up but I see now that it was one of these episodes. Talked to a Dr who is prescribing a diuretic and zofran today. He said it will take a while to diagnose Meniere's as they have to rule other things out. Will I ever feel normal again? I know there is no cure but could these symptoms go away at least for a while?

 

[davidchampoux]

I'm in the process of trying that: http://www.menieresfoundation.org/johnsregimen.htm

You might want to contact the guy as he updated his regimen...

I hope it will work for both you and I...

Best of luck.

 

[Teri]

@Jkph75

Yes, it is normal. I had the onset quite similar to yours. It DOES get better. Give yourself some time.

I have been dealing with it for a couple of years now, and it is SOOOO much better.

 

[Jkph75]

@Teri

What is normal? What I am describing sounds normal for Meniere's? What happened with you? How are you better now? Do you ever feel normal? Do I have to get one of those spinning attacks? I am so scared. I just want to get my life back. I have 2 babies to take care of. I am only 40. I don't want to be debilitated. I just got my duiretics but now I'm afraid to take them. Could I have diabetes instead? How I never thought I would actually want diabetes.

 

[Teri]

@Jkph75

Two years ago I had an onset of ear pressure/fullness, drop in hearing, dizziness, headaches as well as severe tinnitus. There were times when I could not mask the tinnitus it was so loud. It started in my left ear where the ear pressure was the worst, then the tinnitus moved to my head and eventually slightly to the right ear. Earing drops are more frequent in my left ear but my right ear fluctuates as well. I also had some distorted sounds for quite a while as well as
hyperacusis (sensitivity to sound). Microphones/speakers drove me bonkers.

Currently, I still get headaches that cycle around, my ear pressure/fullness is so much better and I don't have the dizziness like I used to. My tinnitus has lowered and does not bother me during the daytime. It only bothers me at night when it is quiet. I don't take any sleeping pills other than Melatonin which is natural (no side affects such as morning hangover). I am managing very well.

I try to watch salt, and I don't drink alcohol. I could do MUCH better with diet but I am working on it.

Dont' stress...it will get better. You just need to give it some time.

 

[Jkph75]

@Teri

Thanks for responding. So, the answer is no you never feel normal again. Is that right? Isn't this supposed to get worse in time? Can you actually keep that from happening? How long do the diuretics take to work if they're going to?

 

[Jkph75]

So, another question. The PA I saw said my tinnitus should go away and that I may never have an episode like this. Is that even possible? Sounds like once you have Cochlear Hydrops you have it forever to some varying degree and never feel normal again.

 

[Teri]

You will develop a new normal. Just as you do with anything else that comes your way that changes the way you perceive or live your life.

My ENT told me that it would take a month for the diuretics to be effective.

Meniere's disease can be progressive or it will not be progressive. Every person is different. Don't live your life with "what ifs". When you get adjusted to your new "normal".....live your life well. That is what I have done.

 

[Teri]

My understanding about Cochlear hydrops is that it may or may not develop into classical Meniere's. I have atypical hydrops because I don't get the vertigo

 

[Jkph75]

Ok. So, I think I might be understanding this now. I don't have Cochlear Hydrops b/c I don't have hearing loss. The point at which I have hearing loss is when I would have Cochlear Hydrops. The tinnitus in Cochlear Hydrops is the result of hearing loss so it doesn't go away. Mine could go away b/c it's not the result of hearing loss (at least that they know of). Does this sound right?

It also seems like there is some sort of damage being done to the ear. At first, it may be small and only causing tinnitus. Maybe the body can repair itself for a while so the hearing loss isn't permanent. At some point, the body looses the ability to repair itself and hearing impairment results. The longer this damage continues the more severe the result, so Cochlear Hydrops develops into Meniere's. Or the damage could be done in a shorter time period, resulting in Meniere's right away. Anyone know if this is right?

 

[attheedgeofscience]

Anyone know if this is right?

It seems to me that you are trying to figure out your tinnitus - I can't blame you (everyone tries to do that in the beginning stages). But tinnitus cannot really be diagnosed. And you are now - like others - feeling the inadequacy of what we typically call "modern medicine". Modern medicine deals with "life preservation" - not quality of life.

From a doctor's point-of-view, tinnitus is a quality of life issue and not worthy of their time. This is the harsh reality of life. I wish it could be different. The same is true for many other areas of disease e.g. autoimmune diseases.

I seem to recall that you had on-going issues with slight tinnitus before it got worse - perhaps there is a clue. In addition, with congenital hearing loss, you perhaps had problems with your "good ear" (that you are unaware of).

You can read through the Information tab on my profile. It may provide a helpful suggestion or two. In any event, if you are "pro-treatment" (as opposed to "pro-habituation"), you will not find more complete and exhaustive information in relation to tinnitus on-the-entire-Internet via that link.

 

[Jkph75]

No, just trying to figure out the disease which I should really just ask a Dr about. Ironically, the tinnitus is the least of my concerns now.

 

[glynis]

Menieres has lots of symptoms but all don't have to be present.
I have had Menieres a long time now and take Betahistine and Proclorperazine to help cope with the symptoms.
......lots of love glynis

 

[Jkph75]

I went for another hearing test today and saw the PA again. The audiologist said I had lost hearing. Then, the PA said I didn't and did some test where he laid me upside down. He said everything was fine, no Meniere's. Seems like they should probably have done this test first before they told me they thought I had this. I didn't even know what it was before he told me he thought I had it. Crazy. Next time I'll wait until I hear something from an actual Dr. Thanks for listening.

 

[glynis]

Great to hear you don't have menieres and must be a great relief for you.....lots of love glynis

 

[Mand b]

@Darren13 sorry for the late response I have not been online. If you don't mind me asking how old are you? How are your symtoms currently ie do you get any good days? What medication or advice have you been given? More importantly how is your hearing? I am really struggling currently my ear keeps having pressure on and off in both ears, reduced hearing (always is when tinnitus increases), bad tinnitus and slightly dizzy and nauseous on and off. I am so miserable my partner is having to do everything because all I want to do is sleep to block it all out. I feel helpless because I do not know what to do to get some relief. I have started to take serc again off my own back as doctors/ENT have gave me no support in what I should/n't being doing/taking. I just need some relief I hate the fact it lasts for so long the symptoms and we have no way of knowing when it will ease up. Most people with MD say they have episodes and then things return to normal although tinnitus or hearing issues may remain. But i am finding this an on going issue this past week. This is not episodes for it to last this long. I am still so scared and right now feel an anxious mess I want someone to help me but I know I am a lost cause because no one can :-( I did doubt I had MD but now its all I think about because what else can it be? Its just hard when I had 2 years with no tinnitus, ear pressure only dizziness which again was not vertigo I still could and can walk around with it. I do get pressure relief by popping my ears its like I constantly have to pop my ears when they are bad. Anyway I had an audio speech test yesterday and I got 100% so my speech clarity is fine. I do however have reduced hearing when tinnitus is bad like now but when its gone or low I hear fine again. No one has said for sure if its a genuine loss or not when this happens. I think I may be trying a low impact white noise generator/hearing aid to help the tinnitus and hearing to use as and when it plays up.x

 

[Mand b]

Can I just ask is there anything I can do myself to make MD symptoms go or ease up? Ie ear pressure (keep needing to pop my ears) or dizziness. I have started to take serc off my own back again but scared because it done nothing previously. Is there anything else other than serc or prochlorperazine I can ask the doc for or buy over the counter that I should be taking or what could relieve symptoms? I hate feeling all this daily when it all comes together. I could handle each symtom if it wasn't all together daily for a long period of time before eases up. But for those who don't know when my symptoms ease up they go for a couple months at a time but I still get dizzy. As mentioned I had gone 2 years with only dizziness as a symptom. Fed up, frustrated, scared, helpless, lonely.....and many more is what I am feeling I just want my life back and to feel normal. Now I worry I will end up housebound because this rough patch now is keeping me indoors and sleeping a lot. Not saying I can't go out but I have no desire to because of how the symptoms make me feel....isolated :-(

 

[glynis]

Hi Mand,
Ask your doctor about taking Serc and Proclorperazine together when having a bad time and that should help.
Buccastem is a lower form of Proclorperazine .
Diuretics can help some people and a low salt diet.

I totally understand how you are feeling and know just how tough it can be and getting people understand.

I think your best option is ask your doctor to add Proclorperazine to Serc as they are the first line off defence for menieres....lots of love glynis xxx

 

[Jkph75]

I'm not so sure they know anything. Today I turned around and left like I was walking on a boat. Then I felt really nauseous and shaky. I still feel lightheaded it happened maybe 45 minutes ago. I have also noticed that I sometimes feel this way before eating and then nauseated after. I am really scared. Does this sound like Meniere's?

 

[Jkph75]

One more question. Unless I'm getting violent spins, how do I know I'm not just having a panic attack?

 

[Darren13]

Hi Mand b
I'm going to reply to your message later today, I'm a bit tied for time at the moment but just wanted to let you know I will be replying today just incase you come on and check. By the way I'm 50. And yes been suffering with lots of symptoms since mid August last year.
Darren.

 

[glynis]

Jkph75,
Always best to push to see a ENT consultant and they can do some tests and rule out other ear problems and give you a diagnosis as only they are quolified to do it.

Try stay as calm as you can because Anxiety can make you dizzy too....lots of love glynis

 

[Darren13]

Hi again Mand b

Answers to your earlier post

I don't get many good days to be honest but as times go on I don't get too many really bad one, frustration is the main one due to being very unbalanced, at long last I'm looking to get back to work end of April after being off since mid August last year. I'm on Betahistine tablets 3x 16mg a day. They seem to do the trick I have other medication but I've stopped them for a while for now. I did read that people who were born deaf in one ear or from a very early age were 20-25% more likely to get Menieres sometime in life. Well it happened to me lol.
My tinnitus that started around late August differs I get 2 weeks loud constant high pitched buzz followed by the same but quieter for 2 weeks then back to loud 2 weeks and so on. Also sometimes accompanied by the heartbeat pounding one and the odd popping one, mainly when I get the fullness in the ear. Since being off work I'm mostly confined to the house, my driving license was revoked in December and I was given a free bus pass but buses are not always that easy to deal with. I try to do a few dog walks a day but longer ones I have to make sure my wife accompanies me as I have on a few occasions been caught out with bad balance and giddy spells which has made walking alone a nightmare. It's left me with hyperacusis in my good ear which is the one with the MD and that ear has lost some hearing also. And visual vertigo. Night walking or darkened areas are a nightmare to deal with so I avoid as much as possible. It's been mentioned at work that I could put in for early retirement due to medical grounds, but I want to give it ago again and see what I can do, although my job role has to change as it was 50% driving 50% office. Obviously the driving bit has gone and the work I did using ladders lofts etc gone with it. So we're just seeing if I can be just office based or not I have Occupation health helping me with that.

 

[Mand b]

@glynis how are you? I did ask my doctor about having the two and he said no you can only be on one at a time. Even advice from pharmacies have said to leave a 6hr gap between the two but obviously taking serc x3 a day thats not possible to do. I am in a constant emotional battle at the moment I am literally scared I keep thinking the worst ie loosing my hearing completely and I am in panic mode inside. When tinnitus is gone I am fine but when its there and loud it reminds me of how much my hearing reduces because I can not hear as good over it. My speech test came back at 100% so my speech clarity is still there. I think its just hard because no one has said for certain if its a genuine hearing loss when tinnitus occurs or if its just because I can't hear over the tinnitus. My last hearing test although lower than when tinnitus is quiet or gone it was still within normal range. Then theres the dizziness its not bad where I can't walk just it never leaves me always feel something. I really do not know who to turn to I feel so alone and scared x

 

[Mand b]

@Darren13 did you have any balance testing? I had the caloric test but used warm air rather than water and it showed low on both sides. I wonder if this has always been the case or if my good ear has lost some of this over the years. Would you consider a cochlear implant if your hearing did get really bad? I really didn't want to think of any of this but now its all I can think about. I am 27 and I am scared that one day I will loose my hearing as weather its Menieres or not the tinnitus can not be a good thing and must show theres some issue with my ears. I am confused because I went 2 years with no tinnitus and just dizziness on and off and my hearing was normal then. If it was Menieres then why did my tinnitus go or calm down to a low level I could not hear for 2 years? It makes no sense because that should of been an issue but it wasn't and prior to this I had it bad on and off for around 2 years. What I am trying to get at is Menieres makes people have tinnitus but I went 2 years with none but the dizziness remained on and off. If it was remission as they say then surely I would have had no symptoms in that time. I hate thinking I will be disabled by this and I will not be able to do anything on my own or even work. All those hopes and dreams shattered by something we cannot control. How long did it take for your serc tablets to work? I had taken them before but not for long and didn't notice any difference. Hopefully taking them now for longer I will notice a difference. When you say refined to your house do you mean because you physically cannot go out because of the symptoms or you stop yourself? What I mean is when I am having a difficult time I give up and want to stay in and stay in bed sometimes but I know if I forced myself I could manage an outing even if its just 5 mins out. Sorry to go on I am feeling low today and I do not talk about it to my family and friends because no one understands. Know one should have to suffer like this but its just typical that we only have 1 ear that works and out of all the problems we could have had with our health we get ear related problems.

 

[glynis]

Hi Mand,
I am on both medications as one on its own didn't help.
I'm doing ok but my ears seen worse since had 3 week labrynthitus on top of menieres and think did more damage.

I know you are struggling at the moment and must be scary only having one good ear and possible menieres.

I would see if you can have some balance therapy at the hospital to help a little.
Try not think about how you will be in years to come because with menieres you can go a long time like months even years symptom free.
I have had Menieres a very long time now and it can be tough but to a point you can adapt and live a normal love .
Always here for you and please don't be scared and push for help with ENT if needed.....
I had balance tests but did not get balance therapy....lots of love glynis xxx

 

[Jkph75]

I am now having vertigo. I also have this feeling like electrical pulses are going through me and my brain is shaking. I have no doubt now that I have this. Every day I get worse. Could something stop this from getting worse? My ENT appointment isn't until Tues. I am afraid I'll be even worse by then.

 

[Jkph75]

I am thinking about going to the emergency room. Maybe they would start running tests?

 

[glynis]

Has the vertigo stopped now and what medication are you on ? Lots of love glynis

 

[Jkph75]

@glynis

It is not as intense but I have this sick woozy feeling like at any minute things could start moving, though they weren't moving when my vertigo was worse yesterday. Once it started yesterday, it has been varying degrees of bad but not as bad as it was at first. I'm not on anything. They won't see me until Tues. Is there anything I can do now to make this better? I feel like I can't get out of bed but I have a toddler and a 7 week old baby and no one else to take care of them. I would really appreciate any help. Not to be funny but I need a Meniere's mentor. Or maybe I should be funny. I'm going to need a sense of humor. The doctors don't seem to understand.