Check in here if you have dizziness every day.

Since April of this year, yes. Varies in intensity. Hard to tell exactly what is going on sometimes, like am I just dizzy, is it a benzo addiction thing, or?....

 

failed shunt surgery 10/2016 - pre surgery only vertigo - never had daily dizziness

crazy week long vertigo attack 2/2017 - dizziness has never stopped

 

Not sure what happened to my post from a few mins. ago. Guess I forgot to send it! Go figure!

Anyway--I was asked, by a N.P. at my Ent's office, one day--when I told her I was having daily dizziness to 'describe dizziness you are feeling without using the word 'dizzy'!!"

Well--that's a bit of a challenge but I told her--I feel extremely lightheaded and it's worse when I'm upright! The only relief comes when reclining in my chair or laying down in bed! It's gotten so bad this past year that it's daily and messes up most of the day.

I 'keep on keeping on' and sometimes it's a bit less intense--and no vertigo--but at times feels like it 'might' occur. I can't turn quickly or bend over without it getting worse--but if I focus 'ahead' or move my head slowly I do pretty well with balance.

It's accompanied by the 'intense head pressure' that really is a problem! I feel like I'll pass out at times and that's when I head to a chair or lay down--to get it to calm down. No answers have come. I've done the Valium/Meclizine (and seems worse) but I have to say 'Meclizine' was the only thing that helped when I had 'vertigo'.

I've had the Endolymphatic shunt surgery--in 2012--and no vertigo since then--but increasing dizziness since! Going places like stores, restaurants or even having alot of company at one time--like during the holidays is something I get very stressed about--but do it because I just can't 'give in' to this!

So--dizziness means different things to some of us I suppose. I don't have ear pressure/but awful head pressure behind my eyes and all around my head--and never have had any sinus issues! So--it's not that.

And--my hearing is slowly deteriorating--so sad! Even with bilateral hearing aids--distortion is so bad and music (which has been a big part of my life) is not pleasant to hear anymore. Sure hoping time will straighten this out--but at my age--now 80--that's not something I have alot of (but you never know).

 

Mine is not daily anymore per say~ when I get it, it comes in microbursts, and always seems to correlate with things like physical exhaustion, sensory overload from things such as being around too many people at once for too long, GOING TO THE GROCERY STORE=definite microburst will occur, migraines, and moving too fast. Oh, getting sick with a cold or sinus infection gets me too~seems to compound the problem. So, if these things occur, yes, I will get dizzy that day, however, if I live in a sterile plastic bubble it seems that I might be able to avoid it entirely! How about that! ::note to self must cease ALL forms of mental and physical exertion, or not::

 

I have daily lightheaded spells but fortunately no real dizziness in a long time.

 

Mac: did you mean the Endolymphatic shunt surgery? How do you know it failed--because the vertigo returned? That's the clear indication I would assume. My ent said if I don't have vertigo--it means the shunt has not failed. I still wonder why the ongoing head pressure and 'near vertigo' sensations are going on--meaning intense dizziness on a daily basis.

Mine was in 2012 and so far 'no vertigo' but as I've indicated--I feel like it's 'about to happen' on occasion. Thankfully it hasn't. But I have to tell you-the dizziness is 'intense' and always present when I'm upright!! From light to 'awful' pressure with it! No fun.

 

me too except for the last 2 weeks, i vomitted twice but no full blown vertigo

 

Yanks Girl,

Yes...I had the endolymphatic shunt surgery in October of 2016. Weeks later I had my first vertigo attack. Then in Feb 2017 I had probably the most destructive attack I've had in terms of hearing and balance damage. Prior to that attack...I never had residual balance issues. After that attack I spent almost 4 months in vestibular rehab...which did not help all that much.

My doctor told me he had an 80 percent success rate with the endolympahtic shunt surgery. Guess I am in the 20.

 

Mac--sooo sorry you had this experience. First of all--my doctor said 'it wouldn't fail'! I think--since he's a 'positive thinker', he felt to even mention to me it might fail--would 'set me up' for failure.
Actually--I had all the confidence that it would succeed!

However, as I said--even though I have 'no vertigo-, I do have awful head pressure and moments of 'imbalance' that just 'hit' when I turn my head suddenly--or my body, etc.

Then after it getting worse--my doctor said--"you don't want the symptoms, if it failed'!
Which made me say to myself--'I thought you said it wouldn't fail'!
Anyway--my last visit to him and subsequent call telling him of how badly I feel--he said the shunt is working or I'd have 'vertigo' which I do not--so far!

He did though, say--he 'wouldn't discourage me from seeking a 2nd opinion'! He is stumped as to why I'm having these symptoms and I'm seeing a Neurologist--a Pulmonologist and a Rheumatologist--for different issues--so am planning to ask each of these if any of my symptoms are due to the problems they are addressing.

I have primary Raynaud's that has worsened. And possibly some more problems due to that--so will ask both the Rheumatologist and the Pulmonologist and Neurologist--if these symptoms could be due to something with the blood flow (Raynaud's causes that problem). And if so, could that be my 'head pressure' and dizziness issues getting worse.

My hearing is just so bad too--distortion is bad and I'm constantly working the 'controls' to hear better with different situations.
Scary--because I sure don't want to totally lose my hearing.

But this awful dizziness/head pressure thing is such a quality of life altering thing--as you well know. Thank you for you reply about the shunt. So sorry it hasn't helped you--let us know if you do anything else to deal with your symptoms.

 

YG,

As you know...everyone's MM is different. So I am not sure I buy the 80 percent success rate. Being an ear surgeon is a tough job. You don't make any money on steroid shots and antivirals. Unfortunately many of the surgeries they do are total gambles and can have life long consequences.

I don't blame my surgeon though. I asked for the surgery. Although... it was made to sound like I would be getting back to normal after it. Not the case.

So now I am going full force on antivirals and JOH. I am 99 percent sure my MM is a virus. However, I am nervous that I may have started both of these approaches too late. I will give it 2/3 more months and let you know.

If it doesn't work I am going with the Labby.

All the best,
Mac

 

I don't blame anyone for going with the Laby if they have vertigo and have it badly. Since I don't have that--and do have hearing in both ears--not good but at least I have hearing--I won't do any more surgery unless the vertigo returns.
I just don't believe the head pressure would be relieved by killing the nerve in my ear and losing totally the hearing in that ear. At least I hear--but days are so hard sometimes---and hearing very distorted on those days. Still--it's there and that's important. Keep us posted please and good luck to you.

 

Since coming out of remission I have been dizzy and have had vertigo attacks almost every day for the past two weeks.

 

Weather killed me last night.

 

Thanks YG...appreciate that...hopefully 2018 is a healthier year for all of us.

 

Dizzy every day.... tinnitus every day... brain fog every day.... some days are bad and i have to take valium... some days not so bad and I can make it thru without -- and once a month to once every three months full blown vertigo attack ( last one was Thanksgiving morning - from 5am til about 1pm) - i was on a pretty good remission run for awhile there and went about 9 months vertigo/dizzy free...

 

Yes--hoping this year we see improvement for all of us too!

 

Hi all,

I, too, have dizziness 24/7 that started about five months before the actual Meniere's diagnosis. I could not figure out what was going on. I have bilateral cochlear hydrops-no vertigo but all of the other symptoms including distorted hearing, loss, tinnitus, and fullness.

I just finished several weeks of vestibular therapy. The therapist was very helpful. However, the dizziness continues. I would say it is not as bad as it was-or I am more used to it now.

I still have pretty good hearing levels in the mids to highs but the lows are moderately severe in one ear and just moderate in the other.

My doctor wants me to try a low dose of Klonopin, but I am wary of the side effects.

Hope everyone has as great a day as possible.

Sailing Guy

 

SMH...