Meniere's Disease

From my experiences i´d say salt doesnt really affect with Meniere´s. Naturally, too much salt is too much.

 

I don't understand the noises as well. On my tinnitus side I can hear and feel a whooshing sound when I touch near the ear or even just by touching the neck slightly. When I keep pressing the sound goes away after a moment and then comes back every third pulse. Why every third pulse?

I still didn't go back to the doctors to test if I have Meniere's. I wasted so much time with them already and they can't do anything anyway.

I had some terrible vertigo attacks in the last weeks which made me feel pretty much useless. The noise level of my tinnitus strongly increases when I have them as well.

I can't drive anymore and even when my parents offered to drive me so I can take care of the stockpile of tasks which have accumulated I had to cancel in the last moment because I was again struck to bed.

And yet, I feel that things are improving. The face numbness was completely gone for a while which is a big step. I am experimenting with supplements and they might have played a part of it.

My next test is Agmatine - something which is used to reduce neuropathic pain as well as to raise pain tolerance.

 

@Mikel, sorry to hear about your situation. It really sounds like Meniere´s but who knows.... doctors should know but as you said with these problems they are pretty much useless. Frankly said: same thing with T, if you ask me. I can get more sympathy and understanding from my dog. No drugs nor surgery available but the good old "cope with it son, you are not dying" -platitude. Masking isnt the option in my case and i dont feel like looking like a robocop with a masker in my ear, or a special agent. i didnt ask for this disease.

Menieres varies and fluctuates so much with me i cannot understand or cope or comprehend or anything with it. This is a mental killer. in the morning it can bring strong ear pain and then be gone in the evening. Or last for a 2 months, 2 weeks.... makes me tired and useless and sucks all the energy. Soul Reaper would be a great name for MD. It comes and sucks your soul away.

Same thing with tinnitus. Comes and goes (never ever totally goes away) but for the last weeks this has been the loudest ever. I tend to think now this is the new Base Camp - level for me. no going back to quieter it used to be. Never.

I feel like a Ferrari with a 77 horse power engine: looking good and but feeling useless. and totally alone.
i had 1-2 or days withouth the ear pressure and now it is back. what a disappointment.

 

@Michael

Sue had some good information that she gave me in terms of her doctor’s advice that I would like to share:

NO alcohol (biggest M trigger) and keep salt fairly low and consistent. Sue was feeling great so went off these recommendations and no triggers, but then the doc corrected her and said that it's to help minimize permanent damage when she does get an attack. Her doctor recommended 1400-1600 mg/day….My doctor recommended 1500-2000 mg per day. Although some folks feel sodium doesn’t affect the Meneires, so they eat whatever they want. Sue's doctor thought this is a bad idea. You could eat whatever you want for a week and not have a problem and think you aren't affected by it, so eat what you want. Then 5 months from now, have a Meneires attack. It is like eating fatty foods. You eat poorly for a month and not have a heart attack, so eat what you want all the time...then 5 years from now, have a heart attack because you ate a fatty diet for 5 years.

Sue tries to stay within the sodium limits by skipping the cheese and sauces!

Hope this helps.

 

nice advices, i agree.

 

Got to admit alcohol is my main "medicine" these days. At the same time i understand the fact that it brings me down even more, especially mentally. I am thinking of telling this to the doctor next time i see him. For some reason i am able to forget T and other ear problems when i am intoxicated. Not a good thing at all.... T hits me back with hangover and gets even louder than normally. i dont recommend drinking for anybody.

 

At my last appointment, doc said eliminate it! I had one last glass of wine that evening and not even a sip since. That was nearly 3 months ago.

I'm not going to have any until at least my next appointment.

 

I don't miss the alcohol. I never was much of a drinker anyway other than some wine off and on. What is difficult for me is chocolate and coffee! Miss that greatly. I also miss having the salt. I have had people tell me that once I get rid of the salt for a good amount of time, I will learn to like food without the salt. Hopefully that will be true.

 

Alcohol, coffee, salt.... have you quit them all? I was off-coffee for a month in the last April. Didnt change anything, which i still find a bit odd. Now i am back to my normal 4-5 cups per day routine.

 

I drink a little decaf coffee (still has caffeine but less) and cut WAY back on chocolate and zero alcohol. I have been doing this and watching salt since May.

 

I am thinking of testing the whole September without alcohol. It takes a lot of effort, though.

 

my doc said one year without episodes... its been 3 months so far, but i had episodes within that time.

 

So...your doctor thinks that one year without an episode would make it okay to have alcohol? Hmmmmm......that doesn't make sense to me. It wouls be the equivalent to saying if you go a year without showing any signs of lung cancer, it would be okay to have a cigarette. Pardon my analogy.

Sue, what did your doctor consider "episodes" to be?
Full ear? Loud T? Dizziness? Vertigo?
Just curious

 

well, I have more questions for him (otoylogist) and the neurotologist. I would think an episode would be bouts of vertigo/dizziness. I guess the 1 year mark is to indicate that meniere's might have finished its course?? and he said to add things back in slowly. He was saying sodium and caffeine first. The lung cancer/cigs analogy doesn't really fit because if we didn't have Meniere's, sodium, caffeine, and alcohol (in moderation) wouldn't be a problem, unlike cigarettes, which are known hazards in and of itself.

I don't have the answers, but just saying what my doc has said. I don't think 1 month w/o these things is going to "prove" that it's not a factor in prevention.

 

Okay, now it seems more clear. Yes, Meneires does run it's course. But, my understanding is that a person with M can go years without another attack...correct? Does the stages of M vary in degrees because some folks have symptoms in varying severities?

My experience is that doctors don't seem to really know much about this disease....particularly primary doctors and ENTS.

 

I guess if you go a year w/o problems, and you add in slowly and continue to not have problems, that's what he meant?? ...I plan to as more questions at my next visit.

 

Sue I have a question about the neurotologist. Has this doctor helped you overcome some of the dizziness? I haven't had the dizziness too badly yet, but I was wondering if it gets worse, if seeing a neurotologist would help.

 

Mine's not bad yet either. she told me that there's a person in her office that deals with patients with Meniere's, with strategies and whatnot. At that time, I didn't think it was necessary, and I'm not at a point that I would need her, but getting in to see her takes many months, so I might schedule it anyway. My neurotologist dx'ed me and then went on maternity leave. I have a followup in a couple months, so will talk t her about it then.

 

Correct.

 

Hi @Dr. Nagler

I started this thread because my ENT as well as an ear specialist recently diagnosed me with Meneires Disease. If you look at my audiograms that I have posted on this thread my hearing has fluctuated and I do have some slight dizziness but never have had any sort of vertigo. I do have fullness in the ear on occasion, headaches that cycle around, and slight allergies. The tinnitus I have seems to be louder as the symptoms come on stronger. My ENT indicated to me that often time a Meneires diagnosis is made when it is not clearly understood what is going on in the inner ear of a patient. I have also been told I may have autoimmune disease of the inner ear, or cochlear hydrops. At any rate, something is going on in my inner ear. I take two Triamterene 37 .5mg each morning and stick to a low salt, no alcohol and low caffine diet. I have been doing well with the diet and exercise. My symptoms seem to be "at bay" for the most part.

Could I please trouble you with some questions?

1) I have had a CAT scan but should I additionally ask for an MRI?

2) I have never had vertigo, but should I be concerned about this in the future?

3) Hearing problems loss is quite common in my family, could the Meneires have been inherited with the exception of my father loss which is military service related?

4) Is •Electrocochleography (ECoG) something I should look into?

5) At this point, would I benefit from vestibular rehabilitation therapy to help me regain some balance? I am 53 and I know I will continue to lose balance as I age. I practice Yoga at home to try to build better balance.

I have an ENT appt coming up and would like to address some of these issues with my doctor as well. I will get another hearing check at the appt.

Opps...I need to add that I was given a a round of predisone and antiviral medicine when I first went in to the ENT in May with ear pressure.

Thank you so much. I appreciate the time and effort you donate to this site.

 

Dr. Nagler,

Similar here but I'm not on meds. I do use the same diet. And have same questions!

 

I started a new thread because I didn't want to get side-tracked from the conversation with Dr. Nagler.

The words in the link indicate the subject:
https://www.tinnitustalk.com/threads/vegas-and-flying-with-menieres.6085/

 

Wonder how many diagnosed Meniereans there are in the T-Talk. Keeps me hoping i am the only one. Those of you who havent been diagnosed.... i hope you never get this "officially". What was that Meniere web site someone mentioned some weeks ago?

 

I'm wondering if I should get area rugs for my new apartment or not. Such a small little thing, but some of us, it's not that small of a decision!

If I get them, it'll help with acoustics, absorbing some sound. Right now, my place is very empty and the sounds vibrate. Also, there's the heat factor... I do live in New England!

But... running a vacuum... could be a bit unpleasant. ...decisions!

 

Sue, I have an idea. Could you get some carpet remnants to use as a large area rug? I used to get those when I was teaching to put in my reading corner. Or, if you know anyone who just laid new carpet in their house, ask them if they have any remnants left over that you could purchase. I am thinking they would cover a good amount of space for little money. You could use strips of backing to stabalize them. If you got some neutral colors (which is what folks typically put in their homes), you would easily match them to furniture. Unless you are the bold, give me color, kinda gal! LOL

 

@MichaelM

I have been thinking about you. How are you doing? I really hope you have been having some better days.

This site has some pretty good information: http://menieres.org/

 

I was thinking of a 8 X 11-ish size... but it would still need to be cleaned now and then. I found one I like, but now I'm thinking might keep just the wood floors. I know it looks more homey with the rugs though.

 

that would be under the dining table. My couch is too "loud" for the pattern in the carpet. but I still don't know...

 

@Teri , thank you for your thoughts. I quess you are among the few that still think about me.
I was on a trip to Europe in the beginning of this month. I felt OK there, not good, but OK.

I cant remember what i have told here... i had to quit working due to Meniere´s. Now i dont have a job and to be honest i am too tired to look for one. Last month T got worse. It got louder than ever and has been like that now for a 1,5 months. It is so loud it´s ridiculous. I feel desperate.

How about yourself? I see you have been diagnosed with MD. i am truely sorry. Any vertigo attacks? I hope not.
This disease is a soul reaper. It eats one from the inside.

 

@MichaelM

I am confident that you will find not only myself, but many others on this forum who care. We are all living this to varying degrees.

I believe, Michael that I am in the early stages of MD. Some days I try to convince myself that maybe I have been misdiagnosed. I guess it really doesn't matter because I have no earthy idea what the future hold for me. This is the difficult part for me because I am a person who likes a well ordered and predictable existence. Well.....when this condition hit me, my world was rocked for sure. I too, have made some life changes. Here are some I will share:

1) First and foremost, I have become a much better with prayer and trying to put my trust in God. I journal EVERY morning and ask daily for graces to get through the day. To live each moment rather than "what if" the future. I ask God to help me live my life and not my worries.

2) I resigned from teaching at a poverty school because of the high stress with students coming in with pretty extreme behaviors. BUT....I refuse to quit entirely as I volunteer in the afternoons at a math table. On bad days, I simply rest and not beat myself up for not going.

3) I am eating better. I completely cut out alcohol, cut back on salt, caffeine, and sugar. I take more vitamins and my prescribed diuretic daily. I also try to drink more water.

4) I exercise by going to the gym at least 3 days a week and try to walk 1/2 to 1 mile daily. I am 53 years old and not as energetic as I was. I also have more fatigue so I feel pretty good about what I manage.

5) I seek out positive influences. @billie48 has some great posts here as well as inspirational videos. I bookmark the videos and copy, paste and file any posts that I feel will help me in the future. I also keep a file of newspaper clippings or magazine clippings that inspire me.

6) I seek out positive people to socialize with. There is a particular lady who has had MD for 25+ years. She has really struggled as she has other ailments as well....particularly pain that is difficult to manage. Through it all, she cracks jokes and keeps me laughing. Also, my own father has been a positive influence. He is 83 and has suffered with loud T (military related) for 50+ years and has had severe vertigo attacks. He is still very active...puts up fencing in the pastures by hand, cuts trees, and other farm related projects. We recently lost my mom which hit him hard after 55 years of marriage but the man keeps on moving forward! Amazing!

7) There are two elderly folks at my church (in their 80's). The woman shared with me that she has had some fairly loud ringing in both of her ears since 2003. She refuses to let it get her down. They are such a cute couple who drive across the country visiting family and friends. They totally live life.

8) CBT -- I have been working a therapy program to try to train my brain to bust out a cycle of negative thinking into acceptance. I am trying to build a good "toolbox" of strategies to help me become more positive.
Toolbox = mindfullness meditations, good books to read such as David Burns "Feeling Good", Bible, Daily journal, and keeping a chart of my negative thoughts and writing positive thoughts to counteract them.

I hope this post finds you feeling stronger and more positive to fight this battle.