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
linda05593 Brookiana
Edited
Yes I've been told I've had vertigo since May of 2016 I've had MRI cat-scan I've seen a neurologist I've seen the ENT nobody seems to know anything sometimes it feels like as if I got a hold to some bad pork and I'm having so many seizures I would say because it's floating is oh my God my life is just so different now and nobody knows what to do I mean nobody is like you're a guinea pig and they're sending you Here There and Everywhere and nobody knows nothing but everybody's getting paid to know nothing and yet you're still suffering with the dizziness and the floating and then it goes away maybe for 2 or 3 days maybe even a week and then soon as you notice it that you're back to normal it happens all over again
Brookiana linda05593
Edited
I completely understand and feel exactly the same. I'd add to that that nobody around me in my family and friends understand either. I don't say much when I'm feeling weird anymore otherwise I'd just be such a drag. But there aren't many days when I'm feeling 100% at all. I'm fed up of feeling weird all the time. Shattered all the time, not able to do what I want all the time. I just get on with it and nap as much as I can when I'm off work but that's all I can do. I've just resigned from my job because I just can't cope anymore for various reasons but exhaustion being the main one. I'm hoping to have a year off and get some strength back.
All the best to you x
emma90918 linda05593
Edited
I know exactly what you mean. I've had nearly a year clear and then BAM this week I've had 5 attacks. Scary and I've become so on edge waiting for the next one. You just feel trapped.
Runwildmoonchld linda05593
Posted
Wait what???? This floating causes seizures???????? What are you saying. Don't scare me
maureen55637 Brookiana
Edited
SoCal.T Brookiana
Edited
That feeling is awful and it's almost like ur on a boat and underwater at same time! Ugghhh it's so hard to cope and so hard for others to ever get it. I feel your pain though and wish you the best with managing your symptoms!
Try to stay positive & be grateful for the things we CAN do!!! (At least that's what I try to tell myself daily!)
JMJ SoCal.T
Posted
Dear SoCalT,
You're exactly right! It feels like you're on a boat and underwater at the same time!! Perfect description! But try explaining that to someone who has never felt it! LOL!
Take good care,
J-
SoCal.T JMJ
Edited
Ha! So true!!! Maybe we should tell them it's like being really sea sick or really drunk without any of the fun parts!?!?!?? Oh and you never get real relief!
Keeping a sense of humor has to help right? =)
JMJ SoCal.T
Edited
LOL! Yes!!!
And I agree....Keeping a sense of humor is essential with this crazy disease. Difficult to do while having an episode, I'll grant you that! But overall, I've needed to find the humor in order to just survive!!
;-)
J-
betty87375 Brookiana
Edited
I just had a labyrinthectomy in June of this year. I still have every symptom of menieres except the vertigo attacks. My balance is way off. That floaty feeling I get as well. Mostly when I'm out and about when there is alot of noise. All I want to do is run home to what I feel is my safe place. I try not to. But walking around and everyone is having a good time and I'm feeling like I'm gonna lose control. Feels like I'm on a merrygoround all the time. The only difference is I don't have the violent vertigo. I still feel like I'm spinning. I thought after surgery because it has left me completely deaf that loud noises wouldn't bother me, but it still does. I don't know how to live a fulfilling life anymore. All I do is stay home and that's no fun but neither is going outside. I'm sorry you are going thru this. I do know how you feel. Stay positive that's the best thing. I always look to the positive even when I don't feel it possible. My thoughts are with you.
JMJ betty87375
Edited
Dear betty87375,
I'm so very, very sorry. Your story breaks my heart. Have your doctors given you any hope that with time, you'll feel somewhat better? Is vestibular rehab and balance retraining an option for you?
I'm just so sorry that you're suffering, so.
Take good care,
J-
emma90918 betty87375
Edited
I've been thinking seriously about the op but reading what you've said is making me rethink.
betty87375 emma90918
Posted
I would just research it as much as possible. I did but still i am not happy with my decision to have it. It's a personal decision so please do not let my experience detour you. Just realize that it may not be the results you are looking for. But it may work out better for you. Good luck in whatever direction you take
betty87375 JMJ
Edited
Thank you. The doctor just told me on bad days just work harder at my balance. I am going to look into balance therapy. I thought me doctor would send me but has not even suggested it. I am trying harder everyday but it's still the same. I'm just trying to stay positive. Thank you again
Guest betty87375
Edited
I ran across you comment from a while ago. I was wondering how you doing today. I had the sac decompression 5 months ago . I am have similar symptoms that you described.
louise16695 betty87375
Posted
Poor lady. I really feel for you. I feel for everybody here 😦
And what occurred to those people at work and via your work colleagues was disgusting - exactly as that other lady put it. Humans can be so vile and insensitive sometimes. Just wait until one of THEM goes through this too...!
I can relate to everybody's symptoms here, it's so awful going through all of this stuff every day, feeling so exhausted and not knowing if there's ever going to be an end to it all. My elderly parents have never had anything like this. Sometimes I feel like: why me???
I wish there was more we could do to speed up recovery.
Does everybody here experience tinnitus? I only very rarely get a little bit of it. I live in Australia and it was actually a psychic in England that's told me that I have Meniere's. I don't seem to have ALL the 'classic' symptoms of it though? I've been experiencing these sensations for almost 3 years now and now I also have palpitations and physical tremors as well. I wake up in the middle of the night and morning with my head shaking backwards and forwards.
I often wonder if this disease is related to hormones/perimenopause/ menopause...?? Did we have a virus at some stage? Is it just part of the aging process? Will it go away once we hit menopause and our hormones have evened out?
So many questions (that no 'specialist' can answer). I read one article where the lady that experiences the rocking/swaying/floating is studying this - and she thinks there may be a connection with fluctuating estrogen levels.