my life and meniere's disease

David, yes, the computer has caused some problems ...

2012-02-14T06:50:23.866-08:00

David, yes, the computer has caused some problems for me...I'm nervous one day I will not be able to 'enjoy' as much time as I do now on it. I've had 2 attacks that I'm pretty darn sure came from over using the computer...which seems really strange to me. I had no idea they could be linked, but I had no other triggers and had spent numerous hours reading a novel online both times it happened. Still not sure why that would be the case...but if my 'eyes' were moving too much, maybe? strange! but glad to hear someone else struggles with computer use.

Mel, thanks! I will be asking my Dr. about that dr...

2012-02-13T18:34:13.105-08:00

Mel, thanks! I will be asking my Dr. about that drug.

What I have noticed is that I feel off balance whe...

2012-02-13T18:30:22.586-08:00

What I have noticed is that I feel off balance when my eyes are tired. Since most of my balance now comes from my eyes, I feel worse when my eyes are tired. I have to make a conscious decision to go to bed early and get enough sleep. I'm really scared about what's going to happen when my baby is born, I will be dealig with that and with a 4 year old, but I guess that's what a good support system is for right. And paternity leave for my husband!

I used to take valium but after a while it didn...

2012-02-13T17:43:09.274-08:00

I used to take valium but after a while it didn't seem to help much. The same goes for anti vert. I think that I built up an immunity.
David

I have had a lot of problems stemming from being i...

2012-02-13T17:40:16.178-08:00

I have had a lot of problems stemming from being in front of the computer too.
David

I'm trying very hard to prevent a Meniere'...

2012-02-12T17:00:05.922-08:00

I'm trying very hard to prevent a Meniere's attack. I feel one is pending and imminent. I get this kind of light headedness during the day and anytime I seem to lie down, a slight spinning feeling for a few minutes. I've been struggling a lot over the last few months and have had quite a few attacks. However, lately since my last attack and gent injection......I'm taking a 5mg valium every night before bed (since night time not only seems to be the hardest, I need to be able to drive the next day)....I'm scared to death to begin to wean this down as I feel it's helped prevent an attack. But....I can't stay on this forever or I don't want to build a tolerance to it. (dr. says I cannot take this and drive at all).
I guess I will SOON know if this did help prevent an attack as I begin my taper of the Valium this week.
I am also about to explore 'food' options to help prevent attacks. I've heard some talk about diet being another good prevention. I'm willing to TRY near about anything to get my life back or at least some normalcy that I used to know before my sudden onset of the cluster attacks. (I've had this for 12 yrs, but the cluster's began in July and have ruled my life since and taken away any enjoyment in life...I'm a 37 yr old mother of 3 children... was an avid tennis player and ENJOYED life very much)
So, I'm going to try some health food options after this taper. I'll keep ya posted if things begin to improve. If anything...I'm sure my digestive system will benefit. I also have a rare condition called P.O.T.S syndrome which calls for a HIGH SODIUM diet to prevent 'fainting, chest pain, low blood pressure, etc so I have to really try to find a happy 'FOOD-SODIUM' median to not only prevent a Meniere's Attack, but not aggravate my POTS syndrome which can also cause lightheadedness and a general 'icky' feeling throughout the day. I'm a real 'treat'! LOL
Anyway..point of this... I"m trying to PREVENT a meniere's attack....and trying a new approach!

Hi Dave, I have had 'visual vertigo' since...

2012-02-12T12:36:00.875-08:00

Hi Dave,
I have had 'visual vertigo' since i got unwell. I was advised this was caused by migraine. It has stopped at this point, but it is too early to tell if it has stopped due to the migraine medications or it just stopped by itself. It usually occurred in front of the computer.

One vision problem i notice i still have is a shimmering of certain objects when i stare at them

Wow. That's terrible, and it's exactly why...

2012-02-11T05:42:47.950-08:00

Wow. That's terrible, and it's exactly why I stay off highways. My situation is strange because I was laid off about a week before I began having massive attacks, and ever since then I've been afraid to even apply for jobs. That's why I'm applying for disability.

Anonymous, is there any kind of work you could do from home? I think the trend in working from home could be a god-send for many Meniere's sufferers. I know many people can't do it, but for me, it's worth trying to change careers entirely just to stay off the road.

Good luck with everything, and stay safe.

David: I know, right?? I was pretty excited to see...

2012-02-11T05:38:22.625-08:00

David: I know, right?? I was pretty excited to see that, because it sounds exactly right for how I've been feeling. Those are precisely the things that make me dizzy, and I'm now realizing they are the very things I need to practice to keep the adjustment going.

I have suffered from Migraines since I was 11 year...

2012-02-10T15:07:16.622-08:00

I have suffered from Migraines since I was 11 years old which left me in bed for 1-3 days. Then in 1994 I was diagnosed with Menieres in my right ear. All went well with minor attacks until 2004 and I had 3 months of non stop attacks only to be told I was imagining it and I did not have MD. So my husband, after another 2 months of me flat on the bathroom floor, took me to see a specialist in Sydney who done a series of tests. I was told it was definately MD and that the hearing was almost gone. He said I could rough out the last stage "burnt out or 3rd" for who knows how much longer or he could try and end it surgically. So I went in for a Endolymphatic Sac Removal which was very successful and life was great for 2 years and I had an attack!
We went back to see him and more tests were done including balance tests and I was diagnosed with Menieres in my left ear as well. And so it starts again. If I get the feeling a Migraine is coming I can have a good chance of a MD episode and a bad episode always leads to a mild migraine afterwards. Like most of the people I have met who are bilateral I am now resigned to the fact my hearing will be greatly depleted before it has had it's way.
I know that in my family there is a long history of Menieres and Migraines, as well as Diabetes.I just hope that the genetic link dies out with me and no more of my family suffers from this unfair disease.
Hopefully an answer is not too far away on how to stop/control or even cure MD. That would be the miracle I am always praying for:)
Toni

Hi Peggy, that is really interesting about sensory...

2012-02-10T13:03:31.960-08:00

Hi Peggy,
that is really interesting about sensory input overloading the system. I'll have to discuss that in a future post
David

That sounds like you had a really scary moment on ...

2012-02-10T13:00:57.525-08:00

That sounds like you had a really scary moment on the highway, thank goodness you weren't hurt! I have lucky that the times that I have had an attack in the car has never been on any major highway. Even then it was quite a terrifying experience.
thanks for the comment
David

I got wind of something interesting this week... I...

2012-02-10T06:18:06.434-08:00

I got wind of something interesting this week... I posted a question on a web site for an ophthalmologist in Colorado about my nystagmus and the prism lenses, and their replies have me on a new track of exploration.

They were talking about the visual component of vertigo and different physical therapy exercises that can help the body compensate. Here's some of what they told me:

"One of the things that I feel is important is adding motion to the activities. By that I mean after tracking objects you track with your head in motions like you described, then move on to tracking and focusing with your body in motion, then adding the challenge of varying postural balancing while doing the above. Beyond that other perceptual strains (like noise and mental processes like math) are added to overload the system. When you can deal with high levels of sensory input and function well you can usually overcome the symptoms. You may see it referred to as visually-related motion sickness, See Sick Syndrome(SSS), or Neuro-Ocular-Vestibular Dysfunction and a few other names."

Hi Tara ..during both my pregnancies I was taking ...

2012-02-10T04:02:10.949-08:00

Hi Tara ..during both my pregnancies I was taking Stemetil night and morning this helped me get through the first pregnancy with only mild vertigo ..when this baby was 2 years..the vertigo and vomiting became much worse and the op that was suggested was to decompress a sac in the inner ear.. for me this kept the severe attacks at bay for many years with just mild vertigo sensations from time to time..I was advised to continue the Stemetil and 3 months after the sac surgery I was expecting my second baby..
These "babies" are now in their early 30's but were "perfect" in spite of the fact I had to take Stemetil.. I hope you have a wonderful pregnancy and birth.

Thank you Taavinen .. also I believe there could b...

2012-02-10T03:51:33.315-08:00

Thank you Taavinen .. also I believe there could be a family link between Menieres and Migraines .. My mother suffered regularly with severe migraines and had to lie in a dark room and would be sick.. then gradually feel better over a few hours.. so maybe this could be a genetic connection. So little is really known about this condition ..what causes it etc..More research could be very helpful.

i had an attack driving one time. out of nowhere a...

2012-02-09T19:21:57.478-08:00

i had an attack driving one time. out of nowhere and it hit me hard at once. no build-up. no time to prepare. just BOOM THE WORLD IS UPSIDE DOWN. I was doing 70mph on a back country road where it's only one lane. there was nowhere to pull off because, surprise, I just happen to be going through a part that is under construction and i'm surrounded by barriers. I slowed down to a crawl and kept traffic back up for what seemed like an eternity. finally found a place to pull over and screamed and yelled. and then proceeded to suffer 30 minutes in my car while the episode passed. I have to drive to get to work. I commute 90 minutes each way. I have no choice but to get behind of the wheel, or sacrifice my job and livelihood. Jobs are not abundant in my small town. Where will I work? I fear this disease will kill me.

Thanks again Mel. I have had people with MAV exper...

2012-02-09T18:16:44.758-08:00

Thanks again Mel. I have had people with MAV experience the same pressure sensitivity as this. Who knows??!!
I am glad to hear that you are doing better these days :)

Yes Taavinen I used to get this towards the end..m...

2012-02-09T04:48:07.447-08:00

Yes Taavinen I used to get this towards the end..my ear constantly felt full ..under pressure even though I was on diuretics (ferusomide ..I think) and If I sneezed it would give me a brief spin sensation ..also when I turned over in bed I would get a brief spin..which occasionally would turn into a full blown attack. I do hope you get some relief soon.

Thanks Mel :) One thing i have noticed is i have ...

2012-02-08T12:35:36.353-08:00

Thanks Mel :)
One thing i have noticed is i have pressure sensitivity. When i blow my nose, laugh hard or do anything that is similar to a valsalva i get a brief spin. Does anyone else get this?

It is very frustrating that this whole thing is a ...

2012-02-06T18:18:00.065-08:00

It is very frustrating that this whole thing is a complete mistery. I have been doing well since my last shunt surgery back in September, just the occasional pressure and really as ringing, but no major episodes thank God! What brought me some comfort was that I had the Vallium at an arms length if I needed it. I am however a few weeks pregnant with our second baby. We are thrilled, but also scared about what would happen if I had an episode right now. That kind of medication is not good for me to take right now. I just hope that my Dr.'s won't give up on me and we can come up with different solutions if something should happen.

Mel, that's very interesting. I think it's...

2012-02-06T10:04:11.347-08:00

Mel, that's very interesting. I think it's possible my doctor did consult with some others in her field, including her mentor from medical school, but I didn't have the benefit of a kind of diagnostic committee, which is what your system almost sounds like to me. I'm a big fan of doctors working together and sharing information and bouncing ideas off one another. I don't think that happens enough in the U.S. As a former writer and editor, I believe in the benefits of many brains working with each other to come up with more and better ideas.

Hi Taavinen I had my Labrinthectomy in 1999.. when...

2012-02-06T02:12:02.741-08:00

Hi Taavinen I had my Labrinthectomy in 1999.. when I woke from the op I was dizzy and sick for a couple of hours but not so severe as in a full blown attack and no nystagmus.. and that was it.. I gradually regained my walking balance (as after this op you only have balance on one side) but the brain is an amazing thing and compensates through feel (of where your feet are on solid ground) and sight ..touch..Two days after the op I was walking up and down the ward unaided and my self and daughter would go walk about around the other floors in the hospital so that when I went home after a week I was fully mobile and continued by walking a bit more each day..
I had the op just over 12 years ago and my balance is slightly affected in that if I go into a room with uneven/sloping floors I am slightly aware and if I look quickly from left to right when I am walking along I will sometimes need to take a side step to balance but that is only very minor things compared to the terrible attacks I was having..
That must be so awful for you to be off balance/dizzy all the time..
I was really pleased with my op at age 26 to decompress a sac as this helped a lot to reduce the attacks in severity for a number of years. Then when they returned at 44 with awful severity .. drop attacks and vertigo/vomiting almost constant I had the Lab. I am so glad I did.

This must be so frustrating for you Peggy.. things...

2012-02-06T01:38:44.581-08:00

This must be so frustrating for you Peggy.. things are done a little differently here in the UK ..we firstly see our GP who then refers us to an ENT department of a hospital of our choice ..there we see a consultant ENT specialist who decides on all the initial tests that are carried out.. and we return to him/her to be told his verdict and suggests treatment..but usually follow up apointments are often with one of the other consultants in the ENT department who can consultant with any of the others in this field or refer you back to the "top" consultant if they get stuck.. but when (in my case) any sugery is suggested It was the top consultant that carried it out both times... this ability to discuss and refer amongnst themselves although at times frustrating that you dont always see the same or "top" consultant does give the opportunity for different and newer ideas to be suggested..
As for eye problems a few years after my Labrinthectomy I was finding night vision difficult ..and this didnt help my balance ..I was stunned when I went for my eye test to be told I had cataracts in both eyes (my father had these) I had worn glasses since the age of 11 and needed them or contact lenses to be able to see clearly at all times..
This time an eye consultant at our prestigious Morefields eye hospital in London was carrying out trials in replacing the lens that was removed with multi focal lenses ..after the op I no longer need glasses or contacts at all ..I consider myself extremely lucky to get these and still marvel at waking in the night and being able to see the clock.. I cant praise the NHS enough..they gave me back my life after serious vertigo/vomiting and drop attacks by performing the Labrinthectomy and now I have better sight then I had at 11..

David, I'm honored you picked up my comment fo...

2012-02-05T18:34:13.396-08:00

David, I'm honored you picked up my comment for your topic this week.

Although I do feel somewhat discouraged, I want to be clear that I don't blame my doctor at all. She really did everything she could, tried every treatment I have ever seen in my research, and I believe her when she says she's given my case a lot of thought.

I imagine that a lot of the doctors who treat Meniere's patients must find this disease almost as frustrating as the sufferers do. But they must reach a point where they simply can't think of anything else.

I'm not sure what my next step will be. I'd like to find another doctor in my area who might have some more ideas, but I am very reluctant to start going from doctor to doctor to doctor... for one thing, I'm not all that mobile or independent. It's a quandary.

Perhaps I will take a rest, tweak my diet, start exercising, and come back to this idea in a couple of weeks.

Ali, It's no small irony (in light of your sta...

2012-02-05T12:00:35.804-08:00

Ali, It's no small irony (in light of your statement that the current medical understanding of the inner ear is stuck in the 'stone' age) that the inner ear is encased in the 'petrous' portion of the temporal bone. What does 'petrous' mean?

petrous
[pet′rəs]
Etymology: L, petra, rock
resembling a rock or stone.

Cheers and strength to all,
JohnH