Meniere's Disease

[Darren13]

Thanks Glynis
Good tip there. I will let you know how Monday goes next week.

 

[Teri]

Please stay positive.

 

[Darren13]

Hi all
I'm still on same medication as I feel very slowly the symptoms are decreasing each attack either seems less harsh and doesn't last as long or I'm getting more used to it or the medication has started kicking in a bit, How long it will last as you know is anybody's guess. But after a 3 and a half month bout I'm thankful for a small rest bite for now. All the usual symptoms have pretty much stayed with me but the tinnitus hasn't been quite so bad the past few days either. But you're always on your guard thinking today could end up being a bad one again. I've been signed off work still and have an occupational health appointment next week.
Also unfortunately I've just had my driving licence revoked, but that seemed inevitable, I have picked up the application form for a free bus pass.
Not so good for my work as I drive as part of my job, have to face that part when it comes to it next year.

 

[glynis]

Hi @Darren13,
Thank you for your update .
Glad to hear your having a little restbite from Menieres and tinnitus.
When I went OH the nurse who saw me had Menieres also and was very understanding so hope you go on ok also.....lots of love glynis

 

[Darren13]

I'm glad you said that Glynis. I heard a rumor that they aren't always very understanding and not always clued up on vestibular conditions like MD and just want to rush you back to work. Probably undoing anything good you had going on lol. Some one else also said like you that they are understanding and helpful.

 

[glynis]

Hi @Darren13,
OH job is to see if you are ready go back to work but on your side.
They will see by law if their is any reasonable alterations to your job that can be done to keep you safe in your work place when back at work and will inform your boss if their is if you tell them.
They are on your side and won't push you if not ready yet and will ask what medication you are on and if still under the hospital and looking into extra treatment etc.
You can tell them you are not allowed to drive no more till more stable with Menieres and treatment.....
Hope this helps you.....lots of love glynis

 

[Darren13]

Glynis you're a Star. Thank you.

 

[Jae]

I'm not sure if I even have this, but having 3 episodes of sudden hearing loss within a year tells me that there is a possibility. Is it possible to prevent meniere's episodes by reducing salt intake to around 2k, and drinking about a gallon of water a day?

 

[Darren13]

Hi Jae
Is it just hearing loss or do you suffer from any other of the problems associated with MD.
I've read many others say that reducing salt and upping their water intake has helped and a few others say not, We're all different so what works for some doesn't work for others. But I'd give it a go and see. Myself I've not really noticed a difference doing it as yet.
Maybe worth chatting to your GP and see what they suggest as you may well need to get your hearing checked at ENT if you haven't already.

 

[Darren13]

Hi Glynis
As you said Occ Health were very good and understanding.

Unfortunately it doesn't hold out so good for my job, the difficulty of not having my licence now and not being able to be sure I'm 100% safe carrying out my duties within my job makes it difficult to hang on to it.
Health and safety wise my job involves ladders lofts and confined spaces, aspects that are pretty much now no no's with MD which isn't controlled enough as yet and might take sometime more before I'm there.
My job is 50% driving and even getting there in the first place to my place of work would involve an hours or more trip on two buses and a 20-30 minute walk at the end of it.

I'm seeing them again in 6 weeks time to be re assessed to see if there is any improvement but in the mean time they've asked me yo think about possibilities of re deployment or leaving on medical grounds, or voluntary severance. I've been advised to talk to my Union for more help on those aspects.and my pension department.

It's all a waiting game now as you know, I've been put forward for vestibular physio which will take a few weeks yet I bet before I get first appointment.

My big problem was already being deaf in one ear which Because of a dead nerve had given me bad balance in the first place, now with MD which is in the good ear I'm obviously in a worse place especially with the balance which is still awful, but again I'm just going to have to be patient and hope things get better sooner than later.
I'm sure work will give me some more time yet to adjust the best I can but how much longer they can wait I'm not sure.

 

[Jae]

No its just that over this year, I had 3 occassions of sshl with no known cause. While my hearing came back for all 3 of them with the last onr leaving a bit of T (like really little), its a sign I migbt have menieres. Ofc I dont have any vertigo, but I wanna know if I can prevent it from getting worse

 

[Darren13]

I'm pretty much new to MD myself so I'm learning as I go along. I'm not sure if there is much you can do as yet, but you could try the usual tips low salt diet, low or no caffeine, and chocolate. And drink plenty of water. It's known to help some.

 

[Jae]

I don't think caffeine does anything for me since I go at least 300 mg a day. Honestly I only had 3 occasions of sudden hearing loss (along with T) throughout the year, but not one of them were accompanied by vertigo. I used prednisone for all 3 occasions, and I supposed all 3 of them were successful (but the 3rd time, it took 2 weeks) . I honestly don't think sudden hearing loss normally has that high chance of recurrence, unless of course there is a major disease at hand. I just pray it isn't meniere's that was actually the cause, but just some random inflammation of my sensory nerves...

 

[glynis]

Hi@Darren13,
Hope you make some progress by your next visit but its got be in your best interest to keep you safe in your workplace .
As you say driving is out for now and ladders defiantly a no no .
Thank you for letting me know how you are doing and any help I can give you goes with out saying anytime ...lots of love glynis

 

[Darren13]

Hi Glynis
Thanks for the comments
My manager is coming out to see me Tuesday after having my occ health report' and obviously wants to discuss things.
It basically states that I'm a danger to myself and possibly others in the state I'm in because of virtigo attacks and bad balance etc, and for this reason they see it very hard to see me going back to my normal work role, they pointed out no driving licence, should not do lone working, neither ladders heights and confined spaces, which unfortunately are all part of my job. They are possibly going to give me a bit more time and see if there's improvement if not I'll have to weigh up options given me which suit me best, I will have a union rep helping me out.
As it stands I'm not really sure the next appointment I have in the next 5 or 6 weeks time is going to be long enough to see any major improvements. It's been bad now for 4 months and if anything at times the symptoms feel worse as my balance is pretty bad at times. As Ive said only time will tell. Im still off until March 1st so fingers crossed but I can see the return of my driving licence being a long way off yet.

 

[AnnaW]

just wanted to share the above story
lady had gentamycin to treat infection and it destroyed her vestibular system
she had permanent vertigo
a neuroscientist designed a tongue electrical sort of prosthetic vestibular organ - amazing results
i would like to this used in menieres ppl, both during and post attack, i wonder what effect it would have on ppl like me who have damaged vestibular organ

 

[Jamescjl]

Hello,

I started with a feeling dizzy and spaced out type of feeling back in august and then started with tinnitus within a week, at times the dizziness lifts but can last for weeks.

And today I turned my head and felt like a vertigo sensation for a couple of seconds.

It was like I was going to pass out, and now feel a bit of balance

I've been to ENTs and hearing is fine and no sign of infection, had MRI that was fine.

Just a little worried I spoke to doctor earlier on phone and said because it's not an emergency they don't feel I need to be seen again at the moment.

Any advice thanks

 

[Phil-O]

Hello,

I started with a feeling dizzy and spaced out type of feeling back in august and then started with tinnitus within a week, at times the dizziness lifts but can last for weeks.

And today I turned my head and felt like a vertigo sensation for a couple of seconds.

It was like I was going to pass out, and now feel a bit of balance

I've been to ENTs and hearing is fine and no sign of infection, had MRI that was fine.

Just a little worried I spoke to doctor earlier on phone and said because it's not an emergency they don't feel I need to be seen again at the moment.

Any advice thanks

Hi @Jamescjl
May I suggest you contact @glynis , who is a very helpful lady who has a lot of knowledge about menieres. best wishes Phil

 

[glynis]

Hi @Jamescjl,
Try Buccastem tablets from the chemist as will help you.
You can ask your doctor about Proclorperazine or Betahistine.

Im away for a few days in London but I will try pop on here when I get chance..lots of love glynis

 

[PaulBe]

Just a little worried I spoke to doctor earlier on phone and said because it's not an emergency they don't feel I need to be seen again at the moment.

Doctors have a funny way of defining "emergency" sometimes.

 

[glynis]

Bump up for Mark P

 

[glynis]

Having a tough time with my ears at the moment needing to rest up on the sofa.
Room spins all yesterday and today when moving my head knocking me right off my feet and my naughty monkeys having a rave and in my head.

Rang the doctors last night and taking max meds....hope it settles soon ,It so debilitating...lots of love glynis.
sorry for the rant

 

[AnnaW]

sorry your ears are not having a great time Glynis. Surf the wave, it will blow over soon. Are you able to do anything to take your mind off it? How deaf are you? Can you listen to the radio? Or is that uncomfortable? Sometime I just want peace and quiet.

 

[attheedgeofscience]

A while back I took the trouble on behalf of the forum to contact the women behind this website...

https://healingmenieres.wordpress.com

...and posted the response from her e-mail in my own introduction (she doesn't like to participate on forums due to hostility from forum members):

www.tinnitustalk.com/threads/my-introduction.1862/page-4#post-60596

You can decide for yourselves. I have no opinion either way.

 

[AnnaW]

i contacted her too and attempted to buy a laser but the sellers website looked so dodgy i was really put off. i was also worried about safety, as it seems an unregulated market

 

[AnnaW]

I should also add that menieres spontaneously goes into remission for yrs and yrs. I had that experience myself (I'm 18 yrs in). My own hearing still fluctuates, I've been over 90db deaf in left ear for at least 15 yrs. But every now and again I can hear the shower water in it. If I had been doing some treatment I ould put such fluctuations down to that, or such remissions in vertigo down to that. But it happens randomly, or rather, the cuase, the pathology is yet undiscovered and is not related to external influences, except keeping my salt intake and other mineral intakes fairly regular, nothing affects it, it has a life of its own.
There is even (unethical) research of sham surgery in meniere patients which demonstrated the strong placebo effect in this disease, I'm not saying thats what this lady has or not, I don't know. But its hard to follow up every remedy with money and possible risk to your own health.

 

[Darren13]

Hi Glynis
I hope you beginning to feel a bit better now.
Hope the Christmas and new year period weren't too stressful on the MD.
Mine was pretty bad over that period unfortunately I think will lots of things going on around that time and the stressfulness of it. The MD managed to rear it head on the main days typically lol. The vertigo attacks are lessening In time and intensity and happen about once a week with the on and off giddy spells daily still.
I suppose it's the bad balance and tinnitus it's left me that are probably the worse to cope with. With the deaf ear I was always off balance to start with now MD in the other one it's a nightmare. I've managed to have two accidents in the past 10 days fortunately nothing too serious, damaged 3 toes on one episode and slipped down the last few stairs in the house giving me carpet burn lol.
I've used my free bus pass a couple of time now lol. And still awaiting my next occ health appointment which is supposed to be this month. I also have vestibular physiotherapy booked in for mid Feb.
Darren

 

[glynis]

Hi Everyone,
Im really finding it hard going at the moment.
Ears blasting away and lots of room spins daily since Friday.
Medication stopping the sickness but so dizzy .
Need see the doctor tomorrow and take it from their.
I have been reduced to tears as its a tough time.
Im a positive person and staying hopeful it will run its course.
I have been on the forum as much as I can but hard focus with out going dizzy...staying positive ...lots of love glynis

 

[Darren13]

So sorry to hear that Glynis
I genuinely hope it eases off very soon for you. And I'm usually on here bending your ear for help myself. Let us know who it's going when you can. All the best.

 

[glynis]

So dizzy all the time and mega room spins.
My doctor has changed a medication and said its BPPV along with my Menieres.
He did a head procedure on me that my consultant did and knocked me straight into a room spin on his couch and was the reaction he was looking for .
Its like non stop menieres attacks when move my head,bend down,laying down and getting up,sitting and standing....
Got take new meds and do the procedure to try shift the crystals and go back in a few days if no better...lots of love glynis