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Old 03-04-2013, 08:51 AM   #1
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Really struggling with bed spins and VN

Hi all. Ok im currently sat on a diagnosis of VN after seeing an ENT who did an inner ear MRI and found my hearing was fine. I started one saturday morning rolling over in bed with a couple of bad spins. Over the course of that day i seemed not too bad but 4 days later, the same thing happened one morning. That entire day and for a few days i had to keep my head perfectly still, no matter which way i threw it i could induce spins. I then started developing the off balance feeling and started feeling that with my eyes closed in bed i felt like i was on a ship and nauseous. The motion sickness really kicked in too. The feeling of motion when i close my eyes, no matter which side im on in bed, is really kicking me. Is it normal for it to last for 8 weeks with VN and does this particular symptom tail off? I also get the focus moving around sensation when im reading or whatever. Sitting still dosnt help that either.
Ive seen a neurologist who i paid private for and he agrees with the ENT and suggests i may be getting silent migraines as i also have visual symptoms.
Im becoming very depressed and quite scared about it all to be honest. I did feel some relife when i saw the docs but that has gone now and i dont know what else to do. Im due to see a physio, booked through my own valition, this wednesday.
Im due to get married in december, i really feel guilty for how this is effecting my and my fiances life.
Any thoughts/advice would be much appreciated.

Thanks

 
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Old 03-12-2013, 03:38 AM   #2
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Re: Really struggling with bed spins and VN

Anyone offer any help?

 
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Old 03-22-2013, 05:01 PM   #3
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Re: Really struggling with bed spins and VN

Hey there,


I've been diagnosed with VN and have experienced the bed spins. If you tilt your head back while stand do you get dizzy? I do not, but during the acute phase I would have. I got rid of the bed spins with some really aggressive VRT that I just do at home. After a couple weeks I can finally sleep on my left or right side without issue. I'm no expert but for me when I do VRT it works best if the exercises I do enduce dizziness. Also I have to stay on the VRT otherwise I go back a day. As for 8 weeks...... I'm on 12 weeks now.... Still not back to my old self yet and loss about 15 pounds. Due to get married in 2 weeks and the brain fog makes me not particularly care Bout anything. So I know where your comin from.

 
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Old 03-25-2013, 05:13 AM   #4
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Re: Really struggling with bed spins and VN

Hey, thanks for the reply.

Yes in the acute phase tilting my head back really made me dizzy. Not anymore. In fact i can tilt my head pretty much anyway and feel ok..although leaning forward doesnt agree with me sometimes. My major symptom at the moment is a constant imbalance feeling. The bed spends dont come on when i move now, but often with my eyes closed i still feel like the bed or I am moving. Ive been doing my VRT but perhaps need something more agressive.

The lack of sleep and worry has made me chronically fatigued now. I was diagnosed with cfs 3 years ago and this all feels very similar. I also think ive developed an anxiety disorder. I tend to freak out now when i stop to cross the road or in busy environments. I keep telling myself it will get better but still finding it very hard. SOmetimes difficult to know whether the anxiety is coming from the inner ear problem or ive driven myself into a state of constant worry. I also still get nauseous if i read for too long or drive for too long.

Went to see a private neurologist and went back to my cfs specialist..both think im presenting with silent migraines. Both agreed i had/have VN for sure but also said its starnge to have the other symptoms ive started with. I didnt want to get onto the case of thinking i maybe now have silent migraines but have started taking lose dose amitriptyline to see if it helps...might get my mood back up also!

How about yourself? Do you get anxiety in certain places with this?
Cheers

 
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Old 03-26-2013, 05:41 PM   #5
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Re: Really struggling with bed spins and VN

Hey Lanky,

With VN and public places I do get anxiety. Moreso tho I get disoriented and my symptoms seem to get worse. The lights, people, the talking, looking around all of it drives me bananas. I'm starting to come around from it now but for awhile now I was really avoiding busy indoor places. I. Not in a city but on a city street I would have been the same way. I don't have any diagnosed anxiety issued and with my job I've always thought I've Ben somewhat of a stress handling guru, but this brought on sever anxiety for me and depression as well. I never took anything for it and now things are coming around but definitely dark times at one point. So yeah I definitely thi the VN could be the sole cause of your anxiety issues.

Same goes for nausea. I had it all day, driving, and looking at the computer screen use to make me nutty! Lol.

I'm getting headaches with this but I find there associated with the VRT and the brain relearning things.

The VRT has really helped with my imbalance. I do about 5 to 10 mins of it before work, at lunch and after supper. Eye movement, tracking things, walking with very quick head movements, walking and spinning quickly, walking strait and focusing on an object and doing quick full head circles I find really helps and then reversing direction. I do them all till I begin to get dizzy on each exercise. Then stop focus and repeat. It's helped me for sure.

Let me know how ur doing!

 
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Old 12-06-2013, 09:42 PM   #6
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Re: Really struggling with bed spins and VN

Hi there,
I was diagnosed with VN in May 2012. I was getting better over the summer of 2013 but hit with major anxiety and lightheadedness again in Sept. this year. Please let me know how you are doing and if you have or still have any dreamy=like state.
Thank you!
Nicole

 
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Old 12-06-2013, 09:46 PM   #7
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biteneck HB Userbiteneck HB Userbiteneck HB User
Re: Really struggling with bed spins and VN

Hi there,
I was diagnosed with VN in May 2012. I was getting better over the summer of 2013 but hit with major anxiety and lightheadedness again in Sept. this year. Please let me know how you are doing and if you have or still have any dreamy like state.
Thank you!
Nicole

 
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