That horrible floating feeling
Posted , 54 users are following.
Hello everyone! I am new to this forum. I have been suffering with Meniere's symptoms for about 10 years now. It started off almost unnoticeable. The feeling of blocked ears, constantly being told by doctors that it was probably the result of some cold or flu. The tinnitus I thought was due to seeing too many loud gigs! And the dizziness seemd only to be tiredness or post migraines' type feelings. Over the years, it has gradually got worse and more frequent until I started suffering vertigo attacks over the last couple of years but then again, not that dramatic just short and intense. Over the course of the last year or so, it has all got worse and so did my hearing it seemed. A doctor finally agreed to refer me to ENT and there you go, they agree that it is Meniere's. I also have a cookie bite hearing loss and am now wearing hearing aids. I have been put on betahistine 3x 16mg a day.
I thought it was all getting better and I even thought maybe I didn't have Meniere's as the symptoms seemed to have gone. How wrong was I!!!
I have had a bit of a mental breakdown in the last two weeks and have done nothing but cry and sleep, I am off work and that floating feeling is back.
Does anybody else get it? It's not dizziness as the room is not spinning, things aren't particularly moving when they shouldn't when I look at them but I feel like I'm floating!! I go outside to the shops for example and I feel like I'm having an out of body experience, like I'm not in control. It freaks me out which probably doesn't help matters. i also feel like my brain is so tired, I don't want to do anything or think about anything as it seems too tiring. I go upstairs and forget why I've gone. Sometimes I think I am losing the plot so I was wondering if anyone else felt like this?!?!? I need reassurance as I'm going mad here.
Thank you in advance :-)
10 likes, 89 replies
kim10710 Brookiana
Posted
Hi there, I know isn't recent but wondering if you have ever felt as though something in your head was shaking. I have had ringing in my ears and fullness for ten months now and recently when I lay on my right side it literally feels as though my brain is shaking. My ENT said possible Menieres since I have some but not all of the symptom criteria. All other major neurological issues have been ruled out with my neurologist. I am beginning to think I really have this. I am 34 years old. Just curious if anyone can relate to this shaking in their head when lying down. Thanks! -Kim
Lizzie1453 kim10710
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Hi Kim, you ask about the shaking in your head, I get a pins & needles sensation like someone is squeezing my head. My GP prescribed 10mg Amitriptyline to be taken at bedtime and they really help
laurie15965 Brookiana
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Thank you!! Today, the floating feeling took a new turn. Thought I was nuts. I explained it to my husband as feeling like my inner self was rattling around in my body like an outer shell or a rock in a can. I googled the feeling I had, happened upon your post and broke down crying. I don't feel like I'm going crazy any more. I'm back to being positive and hopeful and more resolved than ever that even if I never "beat" this, Meniere's and I will co-exist relatively in peace. Thank you again.
kya51846 Brookiana
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Dap1970 Brookiana
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Hope as well I had it went to 4 Ents and I found the one that got aggressive with this and had the shunt put in I would do it again it was worth the risk I still feel like I'm floating but I can handle that better than vertigo 13 hrs every day I thought I was dying there is hope and if you find the right doctor it will help you I hope got better just wanted to share my story GOD bless
siressjs Brookiana
Posted
Hi,
I have similar issues that I have dealt with most of my life. I have had much success with keeping all of my symptoms under control by simply keeping my sodium intake under 1200 Mg a day and a simple water pill in the morning. Please give it a try, it works wonders. It's very hard to get used to the sodium part, and you will lose some weight being that you pretty much can't eat the things you are used to eating, but you get used to it very fast and it just becomes part of life. The ENT is able to put the "clicking electrodes" in your ears (Sorry I don't know the technical term for the test) to determine if your fluid levels are above 9-11 percent. Mine were originally upwards of 30 if I remember correctly. A water pill in the morning such as Dyazide and the low sodium intake pretty much changed my life. I can feel when my fluid levels rise due to my diet such as over holiday weekends when I don't watch the sodium, and get all the floating feelings and hazy cloud over my life (I call it sodium sick). But then, when I kick back in to the diet and pound water, it usually takes about 3-6 days for the fluid levels to balance back out again and I feel great.
Hope this is helpful,
telina40403 siressjs
Posted
Hi I am new here as I have never been on an online group such as this. I have been suffering since 2012 & have gotten the diagnosis this yr, but no spinning as I keep telling them. I was told I had MAV by the ENT, but when my hearing test came back with progressive loss the 3rd time I was told by the neurologist that it's also MD. I have hearing loss, ongoing hissing, sea ?? roaring type tinnitus, rocking dizzy lightheaded, faint hot flash sensation that comes right after the lightheaded feeling hits. When I swerve the ear gets louder even when I am laying down. I fear stroke, or heart attack. My mind tells me all sorts of things bcz of fear. I feel I actually deal with both MAV & MD or they play hand & hand. The rocking & aura is a symptom listed on the vestibular migraine list while all the others are on MD. When I get lightheaded I panic so heart rate goes up from fear.. I keep on getting this after being fine for a wk if I'm lucky. I use to be symptom free for 1yr or 2 b4 feeling down again, but now it returns much faster & it lasts much longer & its much worse. It makes me think I will die as if something else is wrong in my head or body. The longest I was down was 6wks not long ago & laid & cried to God. I have med phobia bcz I fear side effects so it took yrs b4 I tried meclizine at 3x a day. Tried it this yr bcz this has been the worse so far. Did that for 2wks & when I stopped I got severe panic. Then i was out the woods so happy to be well again, but messed up eating & doing what I wanted without thinking.. I am now back sick lightheaded since last wk Sunday.. I am on day 11 since last wk taking a Dramamine a day bcz its not as harsh as the prescribed meclizine. I just want to feel normal. My support system sucks. Have not worked since 2012 so finally put in for ssi & I am just 38 yrs old feeling like my life has been taken over. Had all updated tests this yr, but instead of another MRI they did the brainstem test instead. I had the VNG test that said right side weakness. ENT was bad at caring or explaining well, so I will ask the neuro when I see them again the 9th God spear. I am being referred to a neuroTologist also & to vestibular rehab. I am either feeling faint, or off balance or anxious with fear. I barely feel normal all in one. I am overwhelmed. I was told Dramamine is not a long term med, but my symptoms returns too often now. Need to know of a more long term safe med. Some say it's stages which scares me bcz I dont need to get any worse. I lay & cry. I 😢 all the time bcz it seems I can't get many good days. I have no life with ppl anymore. No one really understands, or even remembers I am even sick at times. God help me plz. 😥 I was prescribed a HCTZ at 12.5mg but scared of side effects bcz I hear bad things about diuretics. I am sensitive to things. I never took it bcz I fear them. I am desperate for better help. I don't drink soda barely, never drank coffee. I don't ?? or smoke ??. I use to drink to have fun at times, but since this I don't even drink now. Plz what can I do.
Ali_is_my_name telina40403
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christine_35821 telina40403
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Ali_is_my_name Brookiana
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siressjs Ali_is_my_name
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Electrocochleography (abbreviated ECochG or ECOG
This is the clicking test that tells if your fluid is causing major pressure issues.
https://en.wikipedia.org/wiki/Electrocochleography
mark_93177 Brookiana
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Newfie1 Brookiana
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You're not going g mad because if you are than so am I. I have also felt this weightless or floating feeling that you are describing. This is all new to me. I was diagnosed a few years ago but it has only been in this last year that the symptoms have gotten so bad. I have no clue what to do anymore
siressjs Newfie1
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Please read my post about the sodium levels. It might be as simple as that. Keep hanging in there. People don’t understand what we go through with this and how it changes our personalities, but there are answers, and you’ll find yours.
I wish you well, and please just give a try to a low sodium diet. It might just be the key to feeling great again. Look at every label and find the low sodium options. They’re out there including pasta sauces and tortilla chips for example.
You’ll be amazed! Good luck and hang in there.
klwpvfc Brookiana
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