How a damaged or non-working balance system can affect your life

Good point Cheese.

 

What a great thread. Lots of info, especially for newbies.

Gwen

 

Thank you for posting that article from the myspace spot cause I haven't been able to open it (just puter problems) and I really wanted read it

Well folks you have just been given a description of my daily life except for the emotional/psych aspects because those I have under control and have accepted my life for what it is and believe me I am still enjoying it ;D

Like HN I to am still wating for the "compensation" to occur and struggle to walk and function on a daily basis....I get the bouncy feeling if I don't keep my eyes peeled to the ground, I stagger, stumble and fall on a daily basis but I have learned mechanisms to help me with fall prevention, so only rarely hit the ground. I have exercised to no avail but am swimming cause it is good for me (up to 15 laps of olympic pool size) and I love the feeling of not having to 'concentrate' on staying upright...it is soooo easy in the pool compared to walking...I still have the occasional drop attack in the pool (when standing up in the water, never when swimming as yet) and of course my mechanism to staying upright doesn't work there but I don't worry because I know I won't hurt myself : I am painfully aware that if I injure one of my remaining balance organs (my feet and legs or my eyes) I will be stuffed Literally I do not want to end up in a wheelchair

Like Cheese I have consulted with one of our top VRT specialists and she feels I am probably as compensated as I will get due to the disease process So I have just learnt to deal with it and get on with life as best as I can ;D After all, the alternative doesn't bear thinking about

Only two of my many medications are NOT ototoxic and yes I was on some of them before my balance got this bad. I really don't think that they caused it or even contributed much to it...it would be impossible to say they didn't, but just as impossible to say they did ??? though my bilateral disease came before all the drugs. When first Dx in 1971 I was given Serc, the loso diet etc and told to live with it...the serc made no difference, so I didn't take it after a few weeks cause it gave me an upset stomach and headache. I just lived with it. Now I have severe bilateral MM/AIED and bilateral vestibulopathy caused by one or both of them...if we really wanted to get technical : I actually have bilateral endolymphatic hydrops that is immune mediated...makes no difference to me, the outcome is the same

For me I know that if I stop these meds life will be more unbearable so I am willing to risk whatever little bit of vestibular function I might have to them (but doubt I have any at all and so do the docs :-\) AND my main objective is to save the last of my hearing in my only hearing ear, so the diuretic stays to (but I am trying another one now cause the Mazide wasn't working as well) It is only over the last couple of years that I needed to take most of the meds on daily basis. Even when Dx as bilateral they were only taken when necessary. I am probably habituated to the valium but I DON'T have any withdrawal symptoms when I wean off it (have been off it for months in the past year while I tried VRT) but I only take 2 mgs a day now and that enables me to function much better

What newbies need to remember is that only a very, very, very small percentage of MM sufferers get to the stage described in the article (and I have other factors feeding into it as well) but once balance is permanently damaged, yes life is different Please remember that there are degrees to loss and not everyone will be the same The BEST thing is NO bloody vertigo once enough of it goes ;D ;D Now I consider that a blessing and feel I am better I know, I'm strange ;D ;D ;D ;D

Do take all precautions to prevent vertigo attacks and therefore further damage, but you will have to weigh up the consequences of using or not drugs labelled as ototoxic...it will always be a personnal choice thingy (plus you docs input) BUT you need to be knowledgeable about all aspects, so keep reading and learning as much as you can

I agree that this a great thread

Maggie

 

Thanks for posting the article. I think it is well written and deserves to be put into the database.

I am not sure where all the comments about benzodiazepines being ototoxic are coming from. When I asked my pharmacist about this class of drug being ototoxic, he said, “No!” It is my understanding that benzodiazepines are considered to be a central nervous system suppressant, which is entirely different than being a toxin. Calling it a toxin seems to me to be an unwarranted and misleading exaggeration.

Of course, benzodiazepines should be used carefully because they have well known addictive properties. I’ve been using Lorazapam for 5 years on an as-needed basis and have had no problems whatsoever with a drug dependency. Right now my symptoms are low and I only average about ½ mg Lorazapam per week and only use it when my nystagmus gets active. Years ago, when my symptoms were particularly bad, I probably used around 10 mg per week. Even at this higher dosage, I never felt tied to its usage.

Here is a list of ototoxic substances from Dr. Hain: http://www.dizziness-and-balance.com/disorders/bilat/ototoxins.html

I think Cheese makes some points that fall in line with my experiences. When my MM first began, I had a lot of problems with balance. It was so bad that I would actually fall over, sometimes, hurting myself. For the first three years I used a cane to help me walk more safely while away from the house. Inside the house, I knew all walls and all handholds. However, over time, I gradually became better at balance and was able to stop using my trusty cane. Now, I walk with a wobble, hence, my choice of username. I’ve adapted.

Although my balance has gotten good enough for me to cope with everyday life … sort of …, there is no way that I can do any activities that require high levels of balance. I used to be an avid backcountry skier and would ski down very precipitous terrain and along thin arêtes. Now when I ski, I fall over very quickly. Even normal household tasks, like climbing up a steep roof or walking up roof edges, are no longer possible. I simply do not have the balance that I had before MM. And I doubt that I ever will. I am not being pessimistic, just realistic. To be sure, I keep working on my balance by taking my walks and taking every chance to challenge by balance system.

Joe

 

bump....how does one ask Ray to make this a sticky or put it in the database ???

 

bump... request has been made

 

bump... waiting for post to be moved to the database

 

Thanks for reprinting the article- I have been to that myspace account before and I cannot tolerate the swirls on the wallpaper.

 

Thanks SCC for posting this.

Last week I saw my ENT consultant who said I don't have MM but have damage to my Balance organ in my left ear. He has also said that I will get better in time but couldn't say how long. But this post explains a lot for me - especially the side affects.

I looked at the list of drugs but couldn't relate anything that could have caused the damage (funnily enough the drugs I am on now are within the list - but I consulted my GP and he didn't seem worried).

However, the consultant did say that the damage could have been caused by an inner ear infection or by a mini stroke in my inner ear which has damaged a blood vessel. With suffering from 2 1/2 years of work related stress and the stress in the summer of my father nearly dying and my mother being placed in a care home, my husband is convinced it was more likely to be the stroke. Which is pretty scary. But who is to know - after all it's not like it's an accessible area to look into.

Time will tell.

 

Thanks so much for posting this article! I am having nearly all of the symptoms and problems described in the article, including trouble walking in the dark, problems with traffic, can't see road signs, etc. This gives me a direction to "nudge" my neurotologist in. I had an ENG last week, and there were NO results whatsoever. I did not respond at all to the hot or cold air in my ear.
DenverJay

 

Hi DenverJay,
Thanks for your note. I am glad the information was helpful. I too am experiencing a lot of these challenges. Please help me get this posted to the Meniere's Data Base. Bring this thread up and click on "Report To Moderator" on the primary post and ask Solari to move it to the database. I'd do it myself but for some reason posters are not allowed to report their own posts. Thanks for your help.
Sincerely,
SCC

 

Hi SCC,

Not sure if DenverJay or anyone else has done this yet but I've gone ahead and used the 'report to moderator' function to request that Ray add this thread to the database.

Amethyst

 

I experience almost all of the symptoms mentioned in the article. But I have damage to two of the balance centers, ear and proprioreception due to my neck and back problems. There has been some compensation over time, I do not fall over anymore. It took months to get to that point. Also I am able, to read better and work at the computer. For the first year and a half that I had this, it was impossible to focus or read anything. But i still have many problems...unable to drive and walking is still difficult for me when both my neck and inner ear problems act up. Have to wear sunglasses whenever I am in a situation with flourescent or mercury lighting or I start spinning.
VRT helped a little bit but not as much as one would expect because the underlying problems still exist and may never go away.

 

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Oh no I have been taking xanax for about 15 years because of being dizzy. Now I have to take it. I have never increased the dose thank God. I take .25mg twice a day. That was the only thing that seem to help me function.

Gerri

 

I just joined this site and, as I read what others have written, it gives me hope. I have ringing (to the point it hurts to be in a quiet place) the vertigo lasts at least 3 days every week. I was diagnosed in May 2008 and I have had symptoms for 2 years +. Next Wednesday, July 23rd, I have an appointment with a specialist in Nashville, TN. Hopefully, I will learn a lot and get some relief. I went to my doctor several times with what I thought was an ear infection. He told me my ears were fine. I took it upon myself to see an ENT. After those rigourous tests, MRI, CT Scan, and hearing tests, he confirmed Meniere's and is sending me on to Vanderbilt. The ENT prescribed Atavan which didn't help and he gave me Valium. By the time I got the Valium, the episode had subsided so I can't say if it worked or not. I have not been able to read or concentrate for very long at a time. Also, my short term memory is SHOT. Does anyone else have the concentration and memory effects of this disease?

 

Dizzblond,
Welcome to the group. You will get a much better response if you post your letter in The Living Room. There are many different causes for the symptoms that make up Meniere's (MM). Good luck at your appointment. The best way to figure out what is causing your symptoms is through your doctor testing for usual and not so usual diseases.

Good luck.

 

Being new to all of this (have had symptoms for 1yr. recently dx) this information helped me tremendously! My Dr. had explained the eye/ear connection, but I understood it so much more after reading this. I have been taking 2mg. of valium every morning, It helps with the dizzyiness and brain fog. I was worried about doing this but both my ENT & primary have said this would be no problem and I wouldn't have adverse affects. I am going to try to do without it as much as possible after reading the article. The video's from Dr. Rauch explained a lot also. Thanks for such good info. I had been drinking lots of diet coke, but from post's in My Living Rm have cut down to 1 a day and drink water continually throughout the day, I have notice a big difference doing this. Thanks for the great info. Teresa

 

Hola Teresa,
Welcome. I am glad to read that the information was helpful to you. Feel free to post any questions in the Living Room and introduce yourself (if you haven't already done so).
-SCC

 

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