Meniere's Disease

[Darren13]

Hi Glynis
I had my last docs appointment. I'm still on Serc 3x 16mg a day. And found out that Ménière's is now officially on my medical notes. I'm back to see him again on 30th and still having plenty of problems, so finding it hard to cope still at this stage. My tinnitus has been raging for past week again after quieting of a bit for a few weeks. Almost to a point now where it's giving get me an ear ache lol. I've enqired by email to my bus company to see if I would be eligible for a free bus pass if my license was revoked for a while.

 

[glynis]

Hi Darren,
Thank you for letting me know how you went on.

The first line of defence for menieres is serc 16 ,Proclorperazine,Bucastem,
A low salt diet and diuretics so you have a few more options for add on treatment.
Then it goes down to more treatment with medical interaction but you dont need me going into that just yet.

You will definitely get a bus pass im not sure about a train pass....lots of love glynis

 

[Darren13]

Thanks Glynis. I enquired to the wrong people lol. I went bus company and it should have been council. So them next. Again it's only to see if I get one if my license is revoked for a while my doc seems to think it will be. So staying one step ahead lol. I have cut as much salt out as poss in past 3 months and I'm not a big caffeine drinker, and I'm alcohol free lol not touched that since I was a teenager due to imbalance with my deaf ear. I'm back with doc on 30th to discuss more will let you know how it goes. Thanks again...

 

[Teri]

@glynis

Do you have built in makers in your hearing aides to help with the tinnitus?

 

[glynis]

Hi @Teri,
I wear Siemens duel purpose digital hearing aids with 4 settings.
Settings pressing 1-3 Times are for amplifying sound and setting 4 is white noise sound .....I also have maskers I used before my hearing aids....lots of love glynis

 

[Teri]

@glynis

Is your at 24/7....or does it fluctuate? I had fluctuating T that was so loud at times, I could not mask it. Now, it is lower and much more manageable. I really only seem to be bothered at night when I am trying to sleep.

 

[glynis]

Mine is severe 24/7 and never goes away due to menieres.
I had years of room spins,sick soon as woke up,bouncy vission ,bilateral tinnitus and hearing loss. Lots of falls and balance problems .
My ears got damaged badly with MD...lots of love glynis

 

[glynis]

@Gin .....have a read up on this thread.....lots of love glynis

 

[Teri]

Oh my goodness @glynis!

The MD beast can be debilitating for some folks. Do you feel like you are managing better now? I hope so. Hugs.

 

[glynis]

Hi Teri,
I take Betahistine 3 a day and 4-6 proclorperazine .
My attackes are more spaced out now and no sickness due to extra meds.
My two main problems are hearing and Bilateral tinnitus but my hearing aids help a lot .
A suffer with breathing problems too .
I'm quite a bubbly person so I just do what I can stay happy and help others as much as I can with tinnitus and Menieres .
It's a lovely forum....lots of love Glynis

 

[Gin]

Hi Glynis thanks for telling me about this thread. I had an ok day today. Not as bad, little dizzy, but not like yesterday. Still at work currently. I did call my gp and left a message asking her for a med that I could take during the day that won't make me sleepy. It takes her FOREVER to call me back. I think she kinda blows me off, out of her specialty now. What bothers me the most is I don't know if it is Meneires or something else. Ive kinda learned to ignore the T at work (using radio in background etc). Its loudest at my small house at night by myself kinda scary. Meclazine has been a blessing to get me to sleep though.

 

[glynis]

Sound therapy can help at night.
My dear friend Michael as just put a detailed post up about it so worth a read up.
Try not to worry as menieres can take a year or so to diagnose as its a progressive disease ...lots of love glynis

 

[Teri]

My ENT confirmed some advice that I received from another doctor. Meniere's can be progressive, but it is not always progressive. Also, because I have never experienced any Meniere's associated vertigo, it is very possible that I will never experience it...particularly the incapacitating vertigo that is "classical" My ENT also stated that I may or may not experience further deterioration in my hearing over time.

I do, however, feel that my hearing loss will be progressive. It fluctuates all the time. The drops in hearing have been significant.

 

[Gin]

I have a friend who has Menieres and she is coping with it wonderfully. Even raised 3 girls. Gives me hope. I went to dinner with another friend a week ago. Her husband had it, and it finally burnt out after a couple of years? No problems at all anymore. Found out Sat that my ex-fiance's brother and dad have it. I spent tons of time with them and never would have suspected it. The brother used to go white water rafting, rollercoasters, etc. So it makes me feel a little more confident.

 

[Teri]

My doctors tell me that everyone is different. Ear problems run rampant in my family. I am convinced there is a genetic component.

 

[glynis]

I had a tough time for a long time but cope better now.
It left me with tinnitus that's through the roof 24/7 but my hearing aids help take the edge off it with amplifying outer sounds .
Their is lots of help for Menieres and can still lead a lovely life...I'm proof.....lots of love Glynis x

 

[Teri]

Hugs to you @glynis! For sure you are proof anyone can weather the MD storm. Thank you for your support and ray of sunshine.

 

[Jae]

I not sure if I have Meniere's disease or not (I hope not, cuz I drank alot of caffiene today, but my tinnitus didn't get any worse, if not it got quiet), but can you regain hearing if you felt like you loss a bit of it? They say you need hearing loss/tinnitus/vertigo to have menieres but it feels like I have some hearing loss, a tinnitus, that seems to come and go in intensity, but no vertigo. I do feel dizzy at times, but not enough to feel like I am falling down, but that's probably from prednisone side effect.

 

[glynis]

Menieres has lots of symptoms but they don't all start together as its a progressive disease .
ENT need to do tests to diagnose Menieres and rule out further problems.

Tinnitus can cause dizziness and wax build up and so can anxiety and stress and virus.

If Menieres is diagnosed I will be around daily as normal and happy support you anytime.
I can list the symptoms -
Dizzy
sicknesses/motion sickness
bouncy vision
Tinnitus
Hearing loss
room spins
eye movement
brain fog

Lots of love glynis

 

[Jae]

@glynis, thanks. But the reason why I think I might menieres or at least the cochlear hydrops variant is because prior to my current condition, I did have episodes of hearing loss on 2 occasions within the year, both which resolved with a few days of heavy prednisone (but this time it didn't). However for my current situation, I did something my ENT claimed would lead to cochlear hydrops. I'd was stuffing myself on a super high sodium diet for a while b.c I was too lazy to cook clean food, and suddenly I just lost a bit of my hearing again with some moderate tinnitus (which intensified with my hearing loss, but it receded a bit, before coming back again... but atm it's in a reccession, and I pray it keeps going too). They say caffiene and salt makes the symptoms worse if I have meniere/cochlear hydrops, and whilst I did lower my salt in take, I took a high dosage of caffeine today (500 mg) (was also listening to my regular gym music which ranges from trance to metal to rock to pop etc), but it seems like my tinnitus went down regardless (less stress from the exercise perhaps?).

Honestly I am enjoying my moment of relief from the tinnitus atm, and I hope it continues to go away.

 

[Jae]

@glynis, I know meniere's is a progressive disease that gets worse with every attack....but is it possible to enjoy music (since hearing eventually disappears....?). I am only 22, and I still have a life time ahead of me...If I have this issue, I just don't know what to do with my life. I am currently studying to be an EE, and I racked up quite some student loans too.

 

[glynis]

I find for me,music does not bother my ears as due to menieres.
Just keep some noise reduction plugs handy if going be around music and if go disco's keep away from speakers and best seak out the quieter spots.
If you use earphones keep the music on the lowest setting available.
With Menieres over a long period of time will reduce your hearing but not everyone looses it completely .
Im 50 and doing ok with moderate loss but wear hearing aids as my tinnitus is so severe....lots of love glynis

 

[Darren13]

I've been deaf in one early all or most of my life up until then age of about 20 I was fairly fine with music. Since then I never listen to it to me it's a nuisance background noise and I can live without it. I'm now 50. Social gatherings party's with loud music playing I can tolerate for no more than 30 mins and have to leave, I'm sure now with Ménière's it's going to be even worse lol, but hey I'm used to it by now

 

[glynis]

Hi Darren,
Great to stay positive,
I'm 50 also and a twin....lots of love glynis

 

[Teri]

Menieres has lots of symptoms but they don't all start together as its a progressive disease .
ENT need to do tests to diagnose Menieres and rule out further problems.

Tinnitus can cause dizziness and wax build up and so can anxiety and stress and virus.

If Menieres is diagnosed I will be around daily as normal and happy support you anytime.
I can list the symptoms -
Dizzy
sicknesses/motion sickness
bouncy vision
Tinnitus
Hearing loss
room spins
eye movement
brain fog

Lots of love glynis

@glynis

I am thinking you could add headaches.

I am curious, glynis, what age you where when MD started for you. What were your initial symptoms? Were your symptoms strong at first or did they start out mild with a stronger progression? Thanks

 

[glynis]

Hi @Ter,
was about 40 so been ten years so far.
Mine started hard and fast.
I woke up one morning and opened my eyes in bed and the room was spinning fast and could not focus at all and lasted about 2-3 minutes then was sick ever where and remained dizzy for days and every time I moved my head I was sick and sick soon as I moved my head every morning soon as sat up in bed and the sickness was everyday .
My left ear was raging and a few weeks later my right ear started.
Walking was hard as the floor felt woobly as I had bouncy vision so felt like bobbing up and down walking and hard judge road sides etc and just wanted be sick soon as I started walking.
My attacks kept coming one after another and another and never free in between each one as constantly dizzy and sick.
Just getting up off the sofa sent me in to a s pin and every day was really hard to cope with.
All this going on I was still coping with severe asthma breathing problems needing regular ambulance rides to hospital struggling to breath.
My doctor got me in to ENT fast but was about a year till Menieres was added to my notes and tests along the way.
I spent so many days and nights flat on my back could not move due to dizziness ,sick,blasting ears and problems breathing.
Medications didn't help and at first one med and diuretics set off attacks and breathing problems.
Then sect 16 was used and that was not enough,so added Buccastem and that didn't help or stop it so added Proclorperazine and I can take 4-6 of them a day so on up to 9 a day that's just for my ears.
The first 8 years have been hell and only the last two more settled as reaching burn out.
Has left me with severe Bilateral tinnitus with hearing loss and not sure if damaged my eyes as needed varyfocals too ....lots of love glynis

 

[Teri]

@glynis

Your onset is EXACTLY how my Dad's started. However, he only had attacks 2-3 times a year. He was in his late 40's. He kept getting attacks (2-3 per year) until the last 5 years (he is 84) now. Each attack lasted about 2 days. He did not take the proper medication for MD because his doctors never diagnosed it as MD. The doctors just called them "dizzy spells" . He is 84 now and does not seem to be bothered any more.

How frequent were your attacks per year?

 

[glynis]

To many to count but they have calmed down now and about 6 this year and one been sick and dizzy all last night needed extra meds in the night ...lots of love glynis

 

[Darren13]

Hi all. well still had a fairly bad last two weeks I'm back to the doctors again Monday coming. I think he mentioned about getting vestibular retraining on last appointment. Also I have a occupational health appointment the following week, I assume to talk over what I'm able and unable to do at work on my eventual return. Still not heard from the DVLA yet but I assume it will take a little while any way, maybe my doctor will mention he's heard from them. But still I've not driven for nearly 4 months anyway as there's no way I could still. So no rush.

 

[glynis]

Hi @Darren13,
I can remember having so many attacks and was tough going.
They might increase your meds or add another to help you like a diuretic or proclorperazine .
Let us know how you get on.
One very good exercise is to put a cushion on the floor and stand on it.
Then try doing it on one leg and then do the same with your eyes shut and be careful as its quite hard to do....lots of love glynis