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
haleyOH Brookiana
Posted
tom15540 Brookiana
Posted
It has now been one year since my last vertigo attack. I still have hearing loss in one ear, but it has improved slightly and I am using a hearing aid with good results. I still get occasional mild dizziness or lightheadedness, but it is brief and very manageable. The tinnitus has also improved. Last October I had endolymphatic sac decompression surgery, and about a month later I had an intratympanic gentamycin injection. One or both of these treatments helped significantly, and I am so glad I did them. I have been able to go back to work, drive, and do everything I used to do before Meniere's. I have even stopped taking betahistine because I no longer need it. I do still take a low dose diuretic. Hang in there and keep going until you find the right doctor. You can get better!
sharon85080 tom15540
Posted
tom, it was reassuring to read your post. i had endolymphatic shunt surgery a year ago which helped a bit (fewer and less severe vertigo attacks). but then moved on to the gent injection about a month ago following a scary drop attack. i am still recovering from the injection - my balance is pretty terrible - but so far no vertigo and overall i feel ok. i am back at work and am trying to be optimistic. i have read that some people need more than one injection, but i am hoping that i won't. i live in nyc and feel i am in good hands with a doctor who has a lot of experience with md. so we will see what happens. but hearing that you are doing so well is a nice boost.
tom15540 sharon85080
Posted
Sharon, I am glad to hear you no longer have the disabling vertigo. It is terrible, and was incapacitating for me. The drop attacks also make you afraid to do many activities. I was afraid to even leave the house, and driving was out of the question. So glad to get some relief from that. I will say that it took a few months for me to really feel like myself again, and there are still times when I might feel a little dizzy from motion, but overall I do feel much better. So far I have only needed one injection, but I understand that I may still need another at some point, and will definitely do it if it comes to that. I hope you continue to do well. I think it helps to live in a big city where there are specialists who have previously treated Meniere's. Send an update in a few months. I would like to know how you're doing.
tonia95847 Brookiana
Posted
I also feel that way. I've always referred to it as the twilight zone or spacey feeling. I was not wanting to believe that I had MD because I could not find this went with it! I'm new here and have been suffering with it for over 12 years. I've been in a depressed state because I'm in nursing school and my worse fear is failing out of school. I thought I had it figured out by taking supplements and now it's back. I'm now on my 3rd week and recently started HCTZ & just started my 2nd dose of methylprednisolone. This gives me hope! Thank you! I was reluctant to start another dose pack, but after reading this forum I know I'm not alone!
jam00358 Brookiana
Posted
i know the floating feeling you are talking about i feel the same way it makes me feel exhausted the only thing i can do to lose the feeling is to stop thinking about it witch isnt the easiest thing to do.
i dont hate the feeling though because if you get the feeling while laying down it can be the most relaxing experience i had the feeling while laying down listening to music and it felt as if my body was pulsing and rising out of my skin i was a little panicked at first but then i decided that i would just see what would happen if i just lay there and at that point id say that was the most relaxing feeling in the world.
tom15540 Brookiana
Posted
It had been about 2 years, four months since my last vertigo episode, following endlymphatic sac decompression and a gentamycin injection. I began feeling light headed and tired about two months ago, but assumed it was from stress and working the night shift, which is unusual for me.
A few weeks later I started feeling the tinnitus again, and I had a very sudden and intense attack. The vertigo lasted about 15 seconds and then relaxed, but soon it returned as a full vertigo episode, lasting several hours and leaving me exhausted. I have been taking Valium and betahistine, which help, but are not really solutions. My doctor prescribed spironolactone, a diuretic, and carbazepine, which made me feel worse. Easter Sunday was the worst, with an attack that lasted most of the day and did not respond to the Valium. I slept for about 18 hours and felt groggy for several more days. since then it has been an attack every couple of days. Fortunately I have been able to work from home. I asked my doctor to prescribe nortryptyline, and that has lessened the severity and duration of the vertigo, but it is not completely gone. I finally was able to get an appointment to see the surgeon that gave me the first gentamycin injection in 2017, and will be going in for a second one on May 29. I'm hoping for the best. I stopped having vertigo for two and a half years - this time I intend to defeat it for good. I will post again after and tell how I'm doing.
marycille10779 Brookiana
Posted
Hi, I also have had this floating sensation for over a week now. My ears feel full, but it doesn't hurt. It is very distracting and disorienting. The room doesn't spin, but I fell like I'm bobbing. I ended up at the ER a couple of nights ago because my symptoms sent me on a panic attack. They did blood tests, EKG, and orthostatic hypotension test and all came back negative. i searched my symptoms and found you guys. I am waiting to hear back from my family doctor to see if I can see her any sooner than 2 weeks. This is giving me anxiety. I have so much on my plate right now (single mom of 2, last year of nursing school, full time job) and I can't concentrate on anyone of those. I feel so depressed. Please tell me the floating feeling goes away. I need something encouraging.