Meniere's Disease

[Elad]

So @SueR , how did you get yours? I mean.. I know there's no exact cause yet but what's your theory on how you got yours?

 

[SueR]

I really don't know. I've been told that my theory is not likely. I was having some serious sneezing fits for months. I'd have loud, forceful sneezes about 30 times before even arriving at work, and then about another 30 by noon. Loud and putting lots of pressure in my ears. One morning, I was fine. In the afternoon, I couldn't understand why the printers were soooo loud! I stayed home from work the next day, and the furnace was too loud (in the basement, new unit so it was quiet... it was the air coming thru the vents). Then I spent about 6 weeks isolated in my bedroom. I thought I had burst an ear drum, or had an infection and was super sensitive.

Then the dizzy spells started.

I am still skeptical of the MD dx. I think I have ear trauma, and that's it. I have good days and bad days with the H. I also have fluctuating hearing, which is one reason doc thinks it's MD.

Right now, I'm going thru a bad day. I went to a party yesterday and it was just too much on my ears. I'm "mobility impaired" at the moment (crutches), and trying to find a place to sit, away from the music, was impossible.

The reason I'm on crutches today is because I was leaving a noisy event, and missed the bottom step.

 

[Diz]

I was diagnosed with MD just under three years ago. My treatment so far has been Betahistine, Cinnarizine and grommet operation with steroid injection all of which have been successful to a greater or lesser degree.
I came across this forum by accident and what a breath of fresh air it was to know that i am not alone with this evil MD and tinnitus.
I have done the usual stuff such as low salt , no caffeine etc. etc. One thing that can set me off is if I get too hot or go from being very warm to very cold.
I have just had a period of three months without any MD attacks but then got an ear infection in my right ear and that started the ball rolling again. I won't ramble on anymore as I'm sure there are folk out there a lot worse off than me .
Thanks for reading.

 

[Darren13]

Hi all
I think I might have MD, I've been recently suffering with the usual symptoms. Dizziness feeling sick. Full sensation in ears. Tinnitus, unbalanced. Also slurred speech on occasions and slight memory loss. Now the thing that makes it worse is that I'm an SSD sufferer Single Sided Defness , so I've never had great balance to start with, but since this attack on my good ear has happened everything is much worse. I find thinks that move quickly around me make me trip out and hearing in the good ear goes from heightened one minute and muffled the next.
I'm off work sick at the moment due to my job being one that makes me unsafe to carry out my duties. My job involves driving and entering confined spaces ie lofts and going up ladders. Not good as you know. Just bending down and standing up can be awkward at times. So I'm fearful of a job now that I've spent the last 26 years doing. I'm on tablets from the doctors and I'm awaiting an appointment from ENT for tests. The tablets are for MD but not sure if they have helped so far, my balance is pretty awful at the moment and the tinnitus annoying. Thanks for reading.

 

[Teri]

Did this come on suddenly? There's definitely something going on in your inner ear.

 

[Darren13]

Hi. Not as such suddenly it happened about 3 years ago first. I suddenly started spinning out for a few hours and couldn't stand. This happened about once a week for about 6 weeks then went. Then it did the same thing about six months later, again the exact same thing and time frame.next was a years break before returning this time not as severe and didn't last as long. Usually the dizzy spells lasted from 3 hours to 7 hours at a time. On this occasion it was no more than 2-3.
This time however yes it was pretty sudden but more symptoms along with it. This time I have tinnitus which hasn't gone since it started a week ago. Also the blocked feeling in the ear as though some has placed a cork in it. My balance is pretty awful not all the time but a lot of the time. I'm holding onto things a lot.throught the day it seems to come in 2 hour slots. Fairly ok for 2 hrs then off kilt again for 2 hours. This has been like this for best part of just over a week, so most defernately the longest period as yet. I e been off work since Wednesday as I'm to worried to return as yet as I had a dizzy spell whilst driving. Fortunately I was able to pull over and call for assistance to come and get me. My work place obviously don't want me to return until I feel I can. Then the driving might now be a problem.

 

[Teri]

Your condition and symptoms certainly parallel those of people who have Meniere's Disease. It is good you are attempting to get evaluated.

 

[Darren13]

Last two days hasn't been so bad which is good. I'm still experiencing problems for example hearing in the affected ear is muffled and still has a full feeling on and off. Plus a pain now and again that side of head. Also my eye sight isn't right my eyes are struggling at times blurry etc. the tinnitus has dulled down a lot for now. I'm walking as much as I can but it's been difficult as I'm wobbly at times and finding it more difficult to judge the traffic when crossing the road. As I've said before I'm already deaf in one ear now the good one is affected it's even harder to judge stuff. I'm signed off for 1 more week yet from work so I'll see how this week goes. I've kept completely away from getting into a vehicle.

 

[glynis]

Hi All ,
I have had Menieres in both ears a long time and sever bilateral tinnitus too.
Now wear duel purpose hearing aids ...lol glynis

 

[Teri]

@glynis

I have tried hearing aids but gave them back after the trial. My hearing was fluctuating.

I am thinking your hearing no longer bounces up and down, therefore, the aids can help with your loss of hearing. Also, when you say dual purpose, do you mean that your hearing aids additionally have a masker?

If my hearing ever stabilizes, do you have any suggestions for me in terms of hearing aides?

 

[Teri]

@Darren13

Are you still waiting to get into your ENT appointment?

 

[Darren13]

Hi. Yes still awaiting an ENT appointment, if I think I'm still unfit for work by the end of this week I will have to visit the doctors again so I will get them to chase it up again. I'm having a go at the head excercise that the Ménière's society sent me.

 

[glynis]

Hi Terry,
Yes my aids have a masker setting also and on the NHS.
My hearing still goes up and down.
Im on Betahistine 3 tabs aday and 4 proclaperazine tabs a day ,still get dizzy at times and fell over a few times as balance not good.
Dont be sick now and bouncy vission ok now ....lol glynis

 

[PaulBe]

Have any of you on this thread heard anything of Menierre's being successfuly treated by Middle ear muscle sectioning? I came across a paper outlining it. One of the most interesting things about it was the report that when the tympanic membrane was opened and the middle-ear visualized, there was evidence of inflammatory change all through the tissue. Certainly supports the notion that Menierre's is inflammatory in origin. I wonder sometimes of tinnitus/hyperacusis/Menierre's syndrome in some circumstances represent something of a continuum of middle-ear disease, with the symptoms that constitute Menierre's representing the apex of the disease process.

 

[AnnaW]

http://www.financialexpress.com/art...ckness-device-comes-closer-to-reality/131251/

just seen this, couldbe useful for us oneday

 

[Darren13]

Finally got the ENT appointment through 4 weeks time. My tinnitus still remains it's been pretty much every day for past month nearly. Although other symptoms have arisen in past week or so, very sore side of head on both sides tender to touch type, mild headaches, and aching limbs as in spine and legs and feet, along with the usual blurry vision, giddiness, lose of speech on occasions or stuttering, foggy head which is pretty much there 24/7 and mild short term memory loss, I'm pretty much very unbalanced when walking and my muscles in legs hurt when walking, I'm taking at least double the amount of time to walk any where. Fullness of ear not there as much as it was. But ears are hurting on and off at times. My right ear is already deaf from possible birth. My left is the one that has the problem at the moment. Been off work 3 weeks now and signed off another 4. I've never really had great balance to start with being single sided deaf but now I'm stumbling a lot especially in darker rooms at night. And sometimes the ground feels like walking on air. Hopefully the ENT appointment will bring one thing to light.

 

[Teri]

@Darren13
I hope you find some answers as well as good treatment for your symptoms.

 

[glynis]

Good luck Darren13 with your appointment ..lots of love glynis

 

[PaulBe]

Glynis and others. Do any of you share a family history of Menierre's or is its appearance in you a spontaneous thing?

Can anyone of you pinpoint a causative factor?

 

[glynis]

Hi PaulBe,
Only I have Menieres a sever asthma too and my twin sister is fine.
My menieres started after a nasty ear infection ....lots of love glynis

 

[PaulBe]

I knew someone who had Menierre's much of his adult life. He could be bedridden for three days at a time. Then one day it didn't come as expected, and has never been back. Just like that.

 

[glynis]

For me I have had it a long time.
Bouncy vision and spinning vision and sever tinnitus and sick soon as I woke up trying get to the bathroom and sever tinnitus .
Now I have sever Bilateral tinnitus and dizzy spells and take 7-9 tablets to control symptoms but does not cure tinnitus.
push to be happy its the best treatment....lol glynis

 

[Teri]

Ear problems are prevent in my family. I feel there is a genetic link.

 

[Darren13]

Hi all. No other person in my family as far as I know have had ear problems. I was born or from very early age with a deaf right ear, apparently the nerve is dead. And I see you are 20-25% more likely than most people to have ear problems ie Menieres when you get older. I've just raced 50 lol. My problems started about 3-4 years ago but the last bout has been much worse than before. I'm torn between Menieres and labyrinthitits how ever it's spelt lol. Been unable to get back to work for just over 3 weeks now. I'm off until early Oct but I see it can take some people up to 6 months before getting back to normal and returning to work. I hope it doesn't take as long as that.

 

[AnnaW]

I developed menieres age 17 and my Dad developed it n his 60s.
I presented completely differently to him and and there are other possible causes for mine. His was completely idiopthic - no infection, no head trauma. Mine was age 17, a few years previous I had a concussion head innjury with memory loss, and I also had tonsilar abscess which made me require a tonsilectomy twice becuase the little mofo grew back ( this was on the left side where the symtoms began).
So my dead presents bilaterally imediately with T and HL on both sides and of course the day long debilitating vertigo with vomiting etc. No drops yet.
I present in only one ear for 17 years. Hearing plummets in the first two years to profound (over 90db) and the vertigo lasts for years and eventually leads to two drop attacks, again leading to head injury.
A few years go by of milder dizziness without rotational vertigo.
Then after 17yrs of being single sided, 36 weeks pregnant, I have full SSNHL in hearing ear lasting 48 hours. Since then bilateral tinnitus and more severe vertigo, more severe tinnitus. I also have visual vertigo, struggle to cook, shop and now can't use a computer very easily or for very long. I no longer read anymore, I basically manage to do the online food shop and send a few emails.
I think what pisses me off is that if we were all rich golfers we would get immune therapy and have a doctor wh thinks outside the box, however we just get told its idopathic, here have this crappy life full of social isolation and failed dreams and just go and fucking deal with it. I was about to start an distance learning degree. I am feeling pretty sore and feeling like literally every part of my life is affected by this fucking constant disease, that nobody can even see.
apologies for vent, its been brewing for a while

 

[glynis]

Hi Anna,
What medication do you take for it ?
I take serc 16 x3 and proclorperazine 4-6 aday so the sickness has gone but still get dizzy but my ears blast non stop and never goes so now wear hearing aids and give me some relief taking the edge off it....lots of love glynis

 

[Teri]

@AnnaW

You are truly a warrior! I admire your perseverance. The Meniere's has hit your hard. Have you had any successful surgeries and or medications to help?

My father has had some pretty severe inner ear problems such as your self for over 40 years. He has taken some medications that seem to have helped him cope.

 

[DizzyLizzy]

Hi. Im new here- been reading for awhile though. I started with left tinnitus almost 3 years ago. Then progressed to attacks of facial pain, stuffy nose, watery eye. I thought allergies, but was told TMJ, migraine/cluster headache. Things then progressed to short vertigo attacks and a general , almost constant feeling of disequilibrium. Finally went to neuro, had mri to rule out tumors/acoustic neuroma, and was treated with beta blockers. Was diagnosed with vestibular and/or basilar migraine along with MAV, migraine associated vertigo. The meds helped tremendously, but then I suffered a ssnhl last april. I was immediately put on steroids, and the hearing returned 2 days later. No dizziness with this attack. Saw neurotologist at Stanford. He thought Cochlear hydrops (atypical menieres) and migraine. He said they are related. My neuro doesn't think Menieres...she thinks atypical migraine and virus attack for the ssnhl. Had a VNG/calorics test and was normal. Still have tinnitus in left ear, worse than before the ssnhl, but hearing us normal. Now right ear is having attacks of tinnitus for a few seconds here and there.
Based on my research, there are several respected neuro that think menieres is another form of migraine. The diet for controlling both is similar, triggers like barometric pressure are similar. There are some research papers that show help for menieres using calcium channel blockers (like verapamil ), which is also used for migraine.
My hearing has been stable since the recovery, but the tinnitus is always there in the left, sometimes worse than others. To manage my issues I take propranolol daily, tizanidine as needed when the neck/face muscles are seized up, and klonopin low dose about half of the days for imbalance and tinnitus stress. I know benzos can be dangerous and addictive, but it was the only thing that stopped the dizziness and lowers the tinnitus. As far as natural supplements, I take magnesium, vit d, pycnogenol, and lysine (in case ssnhl was reactivation of herpes virus, as is a theory with Menieres as well).

 

[Teri]

@DizzyLizzy

Welcome. You seem to be managing your condition well. I get the impression from your post that you have been receiving some good medical treatment. My ENT never suggested a visit to the Nuerolgist or an MRI. She seemed more concerned about having a CAT scan done so she could do surgery for a deviated septum. I still consider that odd...I never complained about my nose...I was only concerned about my inner ear.

 

[DizzyLizzy]

Hi Teri,

Yes, I've had great medical care and things do seem managed well at present. I wanted to mention the migraine connection since a few of the threads I've read sure sound migraine related. Lots of folks think migraine is just a headache, but it is really a chronic neurological disease. And you don't always have to have a headache. I've had my left eye go blurry for hours, thought it was a stroke, but it was migraine.
I think a consult with a good neuro is never a bad idea with symptoms of menieres.