Vertigo while sleeping

Hi guys so over the last 6 months I have been suffering from a relapse with this illness. I was good for quite sometime but then I ended up very stressed due to a diabetes diagnosis and then finding out my mom has Parkinson’s disease.
Anyways after the dust settled some I started to notice some improvements to how I was feeling and went back to work at the end of May. I have still had some blips here and there, but they went away within a couple of days. About a week and a half ago it was the week before my cycle and I awoke with what felt like an electric current throughout my body. My limbs felt like they were in water and it was wavy if that makes any sense. This has happened to me before throughout the years but maybe only once or twice a year and I just chalked it up to being part of this condition. The next day after that happened I awoke to an awful migraine and had it for almost 3 days until it went away, but the rocking and swaying feeling came back with a vengeance once the pain was gone. I’ve once again been dealing with the crazy rocking and swaying feeling now which interrupts my sleep patterns which in turn just perpetuates the migraine cycle. Fast forward to last night…I went to bed at about 930 and didn’t have an awful time falling asleep but started dreaming I was having a vertigo attack and lo and behold I was having one in real life it felt like I was doing somersaults. As soon as I woke up and opened my eyes the spinning stopped and I got up for a while. This was around 1130 pm. I felt swimmy headed, but the rocking and swaying sensation has lessened. I decided to go back to bed about a half hour later and woke up to vertigo again at around 4 in the morning. This time I was violently spinning. It happened twice in the span of a few minutes and that was enough for me so I decided to just get up. I have had positional vertigo in the past and it wasn’t BPPV either. It usually would only happen once around my cycle, maybe every 4-6 months, but not multiple times in one night. I have been feeling like I am floating, swimming, and swaying all day. I am going back to the neuro in October, but at this point I am at a loss to what this is and if these things are common or did I hit the jackpot with the craziest MAV symptoms ever? I should also mention my right ear hurts and it feels full, but this has always been the case for me with bad relapses. I just need some reassurance maybe that I am not going crazy or dying of a horrible illness and that this is in fact part of this awful condition. Thanks

Well personally I haven’t got rid of the Beast for long enough to be able to say I was having a relapse but I know it occurs. Could be delayed reaction to earlier stress combined with hormones. Who’s to know. You have all my sympathy and good wishes. I certainly know that feeling of dreaming about having a vertigo attack and waking up to find it’s a reality. Had that several times. A VRT person tried to convince me I’d developed BPPV on top of MAV but as my MAV started out exactly like BPPV initially then developed into episodic MAV before going the whole way to the chronic 24/7 Beast I declined to believe that! Helen

I’ve had most of my vertigo in bed. At one point it would strike me the moment I lay down.

I sometimes get a little tiny bit of vertigo now, but nothing that would wake me up.

I used to get random bouts of it at 2am.

It’s something that I’ve morphed out of.

I look at it as a phase I went through on the way to recovery … you may be in the same situation.

The best thing you can do is knock yourself out with Amitriptyline or something to help you make it through the night.

Very annoying!

So sorry about your mother, my father had a Parkinsons syndrome.

Thank you Helen. I am glad to know it’s not just me that has experienced this. It feels like this relapse is just getting worse. I can’t wait to see the neuro in October

Thanks James. I hope it’s on it’s way out, but it just feels like it has morphed into something straight out of hell. I am not on any meds at the moment, although I do take a Xanax on very rare occasions which I most certainly will do tonight because I have to work tomorrow. I will be seeing the neuro in October and will be begging him for something then. This is insane. I can’t love like this each moment not knowing what I am going to be like one minute to the next.

When you had your vertigo was it spinning too? When you woke up did the spinning stop? It’s just so weird to me. Usually people say they have to focus on something but not me if I move or wake up it stops. I’m just left with a weird floaty head.

I’ve had violent spinning about 2-3 times (so much so I bought some bucastem but never used it). Once I nearly vomited. So lucky i’ve actually never vomited from it.

The significant vertigo left as swiftly as it came.

I would investigate a low dose of Amitriptyline to see if that helps (obviously discuss that with doc).

Yes, after the vertigo you are left with a hangover. This can last hours or even up to two weeks.

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This sucks…I was going to ask abou nortriptyline since they are in the same family but I could ask about amitriptyline as well. I just hope something works because this illness is nuts and it is taking so much out of me emotionally and physically. I just want it to end at this point…

I have never vomited either although I came close as well before. Thankfully I didn’t, but I can most def see why people do hurl when that happens

Ami won’t cure it, but you will sleep through more of it and that will help you through until it goes again.

Oh, don’t mention it. There’s even more than the two of us cos I have a friend who had labrythinitis 6 years ago maybe and she still gets residual funny balance bits - rings me up to tell me she’d had ‘marshamallow’ floor again, and felt wobbly in her new pair of shoes, and she’s had the dream/reality thing ten times more than me. You are lucky with the vertigo. Mine wouldn’t stop, every time I moved a muscle for 8 days and 8 nights on many occasions. Focussing on anything didn’t help. Only thing that stopped it was to keep totally still and keep both eyes firmly shut. Held my eyes shut could be very painful when the muscles ached with tiredness from doing just that. Good luck with the neurologist. Helen

I think we’re back to getting medals again. :medal_sports: :medal_sports::medal_sports: (don’t worry, people, i’ve got more!)

'ere. You taking the, er … Urinary Incontinence?

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Hehe, not at all.

@Onandon03 that sounds absolutely horrific. How did you make it through that?!!! I would literally have begged to die. You are one strong woman! What are you taking for meds? Are they helping to control the symptoms?

@turnitaround I hope something works for me with little side effects. I need something to at least get me back to enjoying life again. I am certainly not enjoying it at all and haven’t for the last 6 months. I’m so done with it

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Hopefully time will be your best friend on this.

I hope so but my anxiety is through the roof and with all this rocking and swaying I’m afraid I have MDDS now which there is no cure for. So I wonder if I will ever get better :sob:

The back and forth feeling when still?

hey, i have the rocking and I hate it… but i have been watching the videos of Joey Remenyi and I think they are helpful to calm the anxiety. I think the rocking is part of the migraine, even the mdds is part of it, according to some neurologists and recent research.

Yes I only feel better in motion all the time it sucks so bad. The other day when I got off the elevator at work it felt like I was bouncing up and down for a while it went away but I was under the impression that with MDDS you only feel better in motion and the rocking and swaying is a huge part of it

I got that for a year or so. Then it subsided. Whilst there may be no ‘cure’ that doesn’t mean it’s forever.

I have been trying everything lately and short of taking a Benzo all the time I still can’t chill out I have constant rocking and swaying all night long. Also when I sit down. I just want to be still!! It’s awful. I don’t feel like I’m walking on a trampoline or anything it’s just the rocking in swing is the worst part because it’s never ending