Predicting when your next meniere’s attack is like timing the stock market, in other words it really isn’t effective. I know that at one time I thought I knew when the attacks were about to happen and it usually was after I had forgotten to take my medication or I had just taken a long ride in the car or a plane ride. In the past these things have made me lightheaded and prone to start spinning. Unfortunately meniere’s isn’t all that predictable, I have had many attacks out of the blue even when I was in a situation where I didn’t have much stress. Of course I’m not saying that stress doesn’t play a big part of Meniere’s disease because it does, I am saying that meniere’s is very unpredictable.
At times we all have to scratch our heads and wonder why the spinning and dizziness comes on at certain times. I’m not really sure myself because meniere’s has been such a mystery to me and most folks that have it. The really strange thing is that there seems to be a lot of information out about vestibular problems such as meniere’s but there is nothing solid on why it happens and nothing on how to stop it. Although there is some research going on right now that looks promising.
I would be really interested to hear your opinion on meniere’s unpredictability and how you try to keep it all in perspective.
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25 comments:
Interesting. I understand exactly what your thinking. Mine hits me if I have had a day or two of bad hearing. My wife thinks my over exercise causes fatigue and this starts the hearing loss. I feel its sinus related.
I have given up gluten recently and the hearing is improved. I also have stopped the multi vitimin. Coffee was the first to go. 1000 mg of sodium and the diuretic daily have been helping.I do run alot. On days I run I drink Gatorade to replenish lost fluids.You can say I enjoy going the distance.
The unusual part for me is I can recover in about 2 hours from a full attack and I have never vomited. The spins and off balance. My doctors belive its active in my right ear, and my left ear is past the stages of MD.
I have had attacks while working and while sleeping. Weird thing is hearing gets better after an attack.
My perspective is it will get better. God has obviously given me this for a reason. Knowing I have a loving family and I'm not going to die from this also helps. I do stress a bit at work being I work in a retail enviroment and I'm a Manager. I have to always have a back up manager with me that can run the business if I have an attack.
I'm the type that belives anything is possible and won't let the fear of this keep me back.
Sounds crazy but it who I have become.
Stay centered.
Hojo7771@gmail.com
Agree 100%... the unpredictability still has me scared to death, even though I haven't had an attack since last November. Every time I have a small bout of vertigo, I get the shakes and cry because I'm so afraid of what MIGHT happen.
I had the labyrinthectomy in October of last year, and I still worry that it could all go right back to where it was before that. I have no idea if the surgery was the final word. And I don't know whether the tinnitus in my right ear now means I will eventually go bilateral.
It's a big crap shoot.
Of course we try not to do the things we know trigger the vertigo..but lately it's been an on/off all day mild vertigo event for me no matter what I do.
Just another weirdo Menieres phase apparently, but it leaves me unable to commit to anything.
I can often tell when a big attack is coming, but still sometimes get the "stealth attack" from nowhere that is just suddenly "there".
It takes your breath away and leaves you stunned.
Even when I can feel an attack coming it's only a matter of seconds before it hits..just enough time to feel horrified and make an ungainly dash for the Valium.
And people wonder why many with Menieres end up no longer able to work.
We just can't predict it.
Yes Menières is very unpredictable. A very stressfull period of time can lead to no vertigo or to the greatest spin, you never know. Weather might be a trigger - sometimes. Bad sleeping makes me dizzy, sometimes, the day after... When I think I´ve got a clue about what might be a trigger something happens that changes everything.
I also want to mention an italian doctor who says he has got the cure. It would be most interesting to see what you and all followers think about his treatment. I´ve come to the conclusion that there is no "one and only cure". I don´t want to be disappointed anymore. But what if he´s got the answer...
http://www.ear-hydrops.com
Susanna
Weather here in Georgia the last two days has been a bit of a trigger. I'm not sure if it is the constant rain or the barometric pressure.
David
David, I can imagine, because I think NJ is having the Georgia weather now. And I've felt awful for a few days now. I joke that I should become a meteorologist, because I can FEEL bad weather coming now. I'm firmly convinced it has to do with barometric pressure.
SUSANNA~
Thanks for the post on the Italian Dr.
I read through it. Much of what he's saying sounds very probable to me.
Bummer he's in another Country.
I like his attitude concerning his Patients, and I agree with him that many Dr.'s just kind of write us off when we don't respond immediately. Also true that they seem to stick to the same treatments for all, whether they work well or not.
I don't understand how we are supposed to be getting steroid shots and etc. if buying his protocol online though. ??
I hesitate to buy online anyway...but if he had an office here...I'd see him.
It's the unpredictability of this wretched disease that I find the hardest to deal with. My anxiety levels are always at what seems like a fever pitch, like I'm always waiting for it to hit. I've had attacks that I knew were coming and ones that just appeared seemingly out of the blue.Sometimes I think I know what triggered and attack and other times I'm at a total loss. A cluster of 12 severe attacks in May are still a mystery to me. I'm sick of living on anti anxiety meds to keep myself from becoming a total hermit and never leaving the house. Good thing there's people who rely on me on a day to day basis, otherwise I might not even be typing this at all, Meniere's makes me that dark at times. SO much more research needs to be done, so that people who suffer from this can live a decent life.
Also want to note, Susanna - the doctor who's website you have referenced was ousted from several Facebook support groups for his arrogant and insulting behaviour within the group. He made a lot of claims that were contradictory about his methods, so I would tread carefully were you to pursue his information. Could have just been straight language problem, but I don't think so. David, not sure if you are in any of the groups on Facebook?
I'm in a few groups in facebook but I don't think that I have heard of him before.
David
I am having a new symptom lately - a clicking noise in my MD ear. I have the other typical symptoms and have for many years, but now this clicking has started. It is not constant, but very sporadic. Have any of the rest of you been plagued with clicking?
Also, I was wondering about the effectiveness of Allergy Shots and your MD. My doctor has started my on shots in hopes that eventually it will help me. How about the rest of you? Anyone done the shots route? From Sarah
I read some of what's on that Italian doctor's website, and I was definitely put off by his attitude. His writing style ... I don't know what to say, but he sounded very sure of himself without actually saying very much. But that could just be first impressions.
Sarah, I've had some clicking from time to time, but it usually doesn't stay. It's when I have a lot of nasal congestion. I'd say allergy shots might help... my doctors have said that allergies do affect Meniere's, probably because of the pressure the congestion exerts on your ears from the inside. Definitely try it. It can't hurt, right?
I read a little of the website too and one thing that I totally disagree with is that he doesn't believe that you can have a meniere's attack while driving. I know that isn't true because it has happened to me on more than one occasion!
I can see why he was blocked off of some groups on facebook
David
So can I. He's very sure of his opinions, isn't he? But he doesn't have such a secure grip on the facts. LOL.
I get a bit put out when doctors who don't actually experience Meniere's think they know all there is to know about it.
hello
to anonymous the clicking is a normal thing. for me when i am tottally blocked the clicking stops but when i get clearer the clicking starts. clicking for me is actually a good sign for me.
as for the italian, he sounds like a total conman, he has invented nothing, all he is doing is doing 3 stage procedure. and pretending he has invented something. with those sites you got to keep clicking next page and head to the £££££££ section. thats all he wants your money.
ali
Maybe I should have read EVERYTHING on the Italian Doc's site. I thumbed through most of it.
I didn't see where he said you can't have attacks while driving..LOL...I've had many while driving! Bunch of Bunk. Once the Doc's start saying things like that...or that attacks aren't brought on by visual or physical movement...I have to write them off.
So true...if they could experience actual attacks, then they would think differently!
I did get the feeling that it's a money con...wouldn't buy anything like that online.
It´s interesting to read all your comments about the italian doctor-page. I´ve read it and I´ve also shared his ideas at FB. I think we really need to keep discussions about different "treatments" that show up on internet. I´m rather suspicios about any treatment. I haven´t found any that is the one and only one for me, except living as stressless as possible. But when I read about John of Ohios regimen or this italian doctor I cannot help thinking that what if this one maybe, maybe could be the answer for me. Because isn´t that what many of us really hope for - a cure. I would like to ask my ENT about his opinion about these treatments.
About the clicking sound - I have this too. Never in the worst periods but between them. It´s like having dripping of water in the ear.The tinnitus sounds are so many and they change from day to day.
Susanna
Yes, absolutely, we are all looking for a cure. But I think that makes it more essential for us to be cautious and look out for each other... there are unscrupulous people out there selling a lot of snake oil. And Meniere's patients are a vulnerable group of folks who are very ill, sick to death of suffering, and a little desperate for a solution. :(
Speaking of solutions~
Has anyone tried the full John of Ohio regimen yet?
I tried only the L-Lysine for awhile, but had dizziness & stomach cramps and went back off.
Might try a diff. brand later on.
...or a different dose. What was the dosage on the L-Lysine, Lauri? Maybe you were taking too much?
The dosage was 1000 per day.
Next time I'll try less and a diff. brand.
Has anyone tried the chiropractic approach to meniers? I have an appt this Fri with a chiropractor who specializes in Meniers patients. I am an active mom who also works and I am VERY frustrated with the vertigo. I can live with the other symptoms,but not the vertigo. I am on the diuretic daily and have valium, antivert and phenergan when I have attacks which don't have much effect except to make me sleep. I am off caffiene and am trying to watch my sodium. I'm usually down for 48hrs with an episode and I've had 3 in the last week. Doesn't leave alot of time for anything else. I feel bad for what I put my family thru. I would try anything to stop this.
hello anon
i tried chiro, i found the best type of massage to be cranial osteopath.
ali
Hi Ali, did the chiro help at all? What is the cranial osteopath massage?
hello anon
chiro is very intense/heavy muscle manipulation, very quick and alot of clicking. without really warming up the body.
cranial osteopath is very gentle alignment movement that mainly concentrates around the neck and head area. and the session lasts longer. its extremly rythmic and effective.
i am into low impact rather then high impact in anything in ife. i would take a good osteopath over a good chiro practioneer anyday, but thats just my opinion.
remeber dont mix your massages just use one technique at any one time.
regards
ali
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