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That horrible floating feeling

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Brookiana
Brookiana

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

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  • dara1958
    dara1958 Brookiana

    Edited

    I feel your pain! Yes, I get that floating feeling - seems especially bad in large stores like Home Depot or Lowes. Then I get nervous because I have that feeling and it just gets worse. I try to talk myself through it, but it's very hard. I have only recognized that I have "Borderline" Menieres a few months, but it started 2 years ago around Christmas with just not feeling well and thinking it was just a cold. The ringing in my left ear never stops and it's shrill and loud. The vertigo comes and goes, sometimes I can tell I moved my head too fast or too far, other times I have no idea why it starts. I am trying to journal now to see if I can find triggers and I am really watching my salt intake.

    I really do understand what you mean about the room not spinning, but that you feel like you are looking down on yourself. It is very difficult to explain this feeling to others who have not felt it - they think vertigo/dizzy is simply things spinning and that is usually not my problem. 

    I keep trying to tell myself that I can overcome this - I am 57 years old and very active and this is really making me mad. You are not going mad, you sound like most of us - hating this disease and the fact that there doesn't seem to be much we can really do about it to get our lives back.

    I'm sorry for how long you suffered, and I know you can get back on this and be the best possible you that you can be!

    • Brookiana
      Brookiana dara1958

      Edited

      Thank you very much for your reply! I'm glad I'm not the only one. Well, I've always known this but sometimes you need to find someone who says "Yep! Me too!" for reassurance. You are right, I get this floating, spaced out feeling and then it makes me worry and then it gets worse and then my legs go funny and then I just want to go home!!! lol

      I keep thinking that I will be fine too and I forget about it sometimes. I am 38, a higher level teaching assistant in a primary school and have three lovely kids so I feel like I can't afford to let it beat me. Sometimes though, it all gets too much with life's stresses and I think that is actually what triggers incidents like my current one. I've been off work for two weeks and the doctor gave me another week off for now. 

      You have reassured me about the floating , the doctor looked so perplexed when I tried to explain it to him today that he ended up staring at me shaking his head ha ha He said it was a good job I had an appointment at ENT in a month already booked on. He was good though because he is the one who found me this forum when I said it was really getting me down to feel so alone with no help available.

      I like your attitude, let's all be the best possible us in spite of everything!

    • Gela1227
      Gela1227 Brookiana

      Edited

      Hello, new to patient forum

      I believe what you are feeling as "floating " is uncontrollable eye movement. It is very slight, so you don't get the spinning but things aren't still. They float and this also throws your balance. I recently had an episode were my eyes were moving so much and so fast that i could not see.

      I was driving when this happened.

      Luckly traffic was slow bumper to bumper and i had a passenger that took the wheel and was able to get us to the side of the road. I had no warning, i felt good that day. I am going to seek help at Mayo Clinic. I have seen a ent and have gotten steriod pills and even a steriod shot in my ear didn't help. Hope to find some relief so i share the info.

    • emma90918
      emma90918 Brookiana

      Edited

      I've just googled teaching and menieres and your post came up. I am an HLTA in a primary school and although my school are brilliant, there are still triggers with time off. Before the summer break I had 3 absences very close together. Only a day at a time but 3 in 100 days triggers a meeting and target set of no absences for 3 months. With every best will in the world I could not foresee that I would get a bad attack only three days after the meeting. It has been over the weekend and I've been in bed for both days. Rang in sick thus morning as aftermath as you probably know is hell. I expect OH willbe called in but I don't know how they can help. Any thoughts? 

    • Brookiana
      Brookiana emma90918

      Edited

      I'm so sorry to hear that 😢

      I have resigned since I wrote that post as it was getting ridiculous. I went to see occupational health who was great and came up with lots of suggestions to reduce stress and make my life easier but none of them were truly implemented. My colleagues were resenting me for the time off, i could tell. Some stories I wrote on forums for the hard of hearing about how ill work made me feel were screenshot and shared behind my back with the head and well, it was all a nightmare. Please always hide your identity because some evil people are out to get you. I felt unsupported in the sense that no one seemed to understand my problems, worse even they didn't like me because of my absences, and to top it all of whenever I tried to explain and cried they suggested counselling or just looked at me with pity and disgust and treated me like a child.   I asked for my job role to be changed and it was just refused so I left. I am now unemployed and trying to get better , doing my vestibular exercices and taking one day at a time. I am still very bitter to be honest. I gave 10 years of my life and would have been quite happy taking a pay cut and working in the office instead but there just wasn't any position I could fill, they wanted me as an hlta running around all day and told me that was the nature of my job. 

      I hope you get a better supportive lot where you are. I suggest mentioning occupation health because they are very good at helping you (they're on your side and want to keep you in work) . When I had one if those meetings you are about to have, as long as I explained what I was doing to try and get better, they were fine. 

      This disease is a nightmare, I really wish I could wake up one day and feel great ... 

      good luck to you!! 

    • maureen55637
      maureen55637 Gela1227

      Edited

      Yes I get the slight eye twitching too   a bit like feeling 😵 cross eyed and get the floating feeling in the head.   Half a Valium is the only thing that works for me but keep it to minimum. Only when I am freaking out and s scared of symptoms or it’s affecting my breathing whilst trying to go to sleep. Best of luck!

    • maureen55637
      maureen55637 Brookiana

      Edited

      Wow that is disgusting. Very ignorant people and how dare th3y screenshot u page. I am a teacher aide for 3 different heads of departments in large high school. Are u not in the Union?  They would have helped u being bullied at u job. Best of luck 
    • patricia38083
      patricia38083 Gela1227

      Edited

      ihave not feeling like that  its like floating in the air my ears ringing than i have a 5 minute headache afterwards
  • JMJ
    JMJ Brookiana

    Edited

     Dear Brookiana,

    I feel so sorry for what you're going through!   I hate what this disease does to people!  It's so isolating and can really make you doubt your sanity.  Well, you're in the right place.  You'll get support here.  And, you'll eventually find someone who has expererienced your exact same symptoms.

    I know what you mean about the brain fatigue, and being too tired to do anything...even to think!  I spent a year on the couch, feeling exactly like that.   I didn't get any energy back until the vertigo went away, which for me, required inner ear injections with steroids.

    As to the floating....I used to feel very "floaty".  And it was most pronounced when I was going up and down stairs.  My feet felt like they were stepping through clouds or something....It was as if when I stepped on the stair, the stair would move downward with my step....It was spongy and very weird.  How do you even describe this stuff?  It all sounds so crazy.  But when I wasn't haven't outright vertigo, I often felt a number of odd sensations that really couldn't be called dizziness....but they were very surreal.  

    Worry not!  You're not going crazy!  You're caught up in a Meniere's crisis, and this is exactly the type of thing that happens.  I wish you the best of luck.  And I hope you'll get back with your ENT and see if there is perhaps additional treatment options that might help you.

    Again, so sorry for what you're going through!

    Take good care,

    J-

    • Brookiana
      Brookiana JMJ

      Edited

      Thank you for your reply JMJ!

      I laughed at your description of the stairs moving. I know it's not funny when you are experiencing it but it's just a good example of how differently it can affect us all. 

      I feel very relieved to know I am not going crazy , it's a weight off my shoulders and a step forward in accepting it I suppose. I have woken up this morning feeling a lot less depressed and scared after reading all your comments!

      I am looking forward to seeing my ENT consultant in a month even though I am not sure what he can do for me. At least he might have an idea of what I mean :-)

      Take care too.

  • Pupper
    Pupper Brookiana

    Edited

    Yes the floating, lethargy and brain fog are a pretty common thing with MD.  After all, we're not always spinning.   I sympathize.  It's hard to convey to people why you're feeling so uneasy, even though you're not spinning.  I tell people who know me, "I'm floating", and they understand.  But other people would not.  

    And as someone said, it's worse at big stores.  I'm not sure why. Maybe because there's so much visual stimulation, and it's all moving because you're walking.  

    Try and relax.  Stress makes it worse.  

    • Brookiana
      Brookiana Pupper

      Edited

      ah the brain fog, yes , I call it post-migraine state but it is the same really, isn't it? Funny how you can wake up one day and have brain fog but be absolutely fine the day after. I think it is related to tiredness in my case, and stress as you pointed out. 

      I have taken up yoga about 9 months ago and it has helped greatly to relax and destress. It has also helped with my balance greatly and my ability to focus. The problem is being disciplined though, I try and supplement my weekly class with sessions at home but when you're shattered it's hard to find the motivation.I will try and relax more anyway.

      Thank you for your reply :-)

    • maureen55637
      maureen55637 Pupper

      Edited

      Yeh yeh brain fog feeling drunk.  Worse in large dept stores as u say so much visual stimulation etc and turning to look in all directions makes it worse.
    • haleyOH
      haleyOH maureen55637

      Edited

      Has anyone found relief in their symptoms? I deal with this 24/7.
  • angela84522
    angela84522 Brookiana

    Edited

    Ohhh yes.  I have learned not to turn my head from side to side but to turn my whole body.  That seems to help most of the time.  If you are going to dinner or a meeting don't sit in the middle of the table where you have to look back and forth at people .. Sit on the end this way you don't have to turn your head.  When it gets real bad like your describing it helps me to be in a quit dark room with a cool rag on my head and some headache medicine until it passes.  The Doctor is going to start me on a low dose of blood pressure medicine tomorrow to see if it helps.  It is suppose to help reduce fluid in the ear.  Praying it works.  It's a horrible way to live. I am so sorry you are having to deal with this.  But what your going through is part of it.. Hang in there. 

    • Brookiana
      Brookiana angela84522

      Edited

      Thank you Angela! I will take your tips on board. I had never thought about where I sit actually but it makes so much sense...

      I am taking Betahistine which is supposed to help the blood flow in the inner ear. It seems all these doctors have different approaches to the problem! Let me know how you get on with the blood pressure tablets please as I am willing to try anything to get better.

      Take care and good luck.

    • Lizzie1453
      Lizzie1453 angela84522

      Edited

      Don't sit at a round table under a bright light either I discovered...

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