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I'm desperate, I really need your opinion here

I find it impossible to lie down and sleep. I feel I’m constantly and violently moving in every possible direction. I feel almost like passing out. It’s a nightmare and it’s non stop for a whole year and counting.
I have extreme floating-rocking-bobbing-swaying sensations all day long and it’s impossible to sit still without having to consciously move so I can mask the inner motion feeling, but when I’m lying down it’s the worst. The slightest, tiniest movement I make when I’m lying down, like moving my fingers makes me feel like I’m uncontrollably moving and it’s really affected by the movement of the heartbeat through my body, like I can feel the blood flow with violent motion feelings. Sometimes it’s in total sync with my heartbeat.
Please, can someone tell me if someone with MAV can have these 24/7 and worst every single time when lying down for a whole year non stop?
The non spot nature of this symptom when lying down seems to fit the Mdds symptoms, not the MAV.
I would really appreciate your help…

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MAV/Mdds what difference would it make? I’m not aware of a difference in treatment?

MAV is a bucket diagnosis given when other causes are ruled out.

I experienced fake motion when lying down or turning in bed for a long time. Sometimes they would happen in the middle of the night and cause me to wake up.

Eventually after many months, possibly a year or two or more (feel free to dig into my journal) these sensations subsided and stopped happening.

I can’t be sure what caused them to go but go they did.

I did briefly get back the turning in bed issue after a visit to the dentist who squeezed my jaw muscles to look at my jaw alignment, but this again disappeared after a month or so and has not returned again.

Three things:

  1. These sensations are annoying, but they won’t hurt you. It’s kind of boring but you might want to consider changing your reaction to them to help you cope better. Accept them for what they are for the time being and believe they will eventually go.

  2. Maybe you can explore some different medication to see if that helps. I was on Amitriptyline. It didn’t resolve these sensations though but helped me sleep and overall I ended up more calm.

  3. Don’t lie flat in bed. Consider multiple pillows or a special wedge on your mattress to keep your head higher than your body. This can eliminate this symptom. It’s not a forever solution because I found this can put a lot more pressure on your hips. But ok for a few months. Experiment.

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This is exactly what I needed to hear today James.

Maria, if it’s a bit of reassurance, I get this too. More frequently now than the last 9 months.

James is right, we need to change our mindset about it. And it’s so difficult to do that because our minds automatically switch to panic mode. Personally, I start dissecting every possible cause for this pathologically, and get frustrated when I… nor the doctors, can work out what the hell is going on in our brains/ears. Simultaneously, my anxiety is running high worrying about the day ahead, whether this will be long haul relapse…

Sometimes, you just need to hear exactly what James has just said. I’m hoping this changes for me. It’s not 24/7 for me anymore, and that’s what I should focus on. Focus on the small positives.

But I have to ask @turnitaround, when this happened to you, was it just when you lay down or when you were upright? For me it’s positional. Glad it improved for you.

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My story is a long one but I’d get all kinds of symptoms. Most of my specific positional ones would occur when lying down only. This must have something to do with blood pressure to the head?

But standing I’d be permanently imbalanced, and also dizzy and often nauseous without medication. Imbalance remained with medication. I could go on but almost all of this is in my diary so won’t repeat it here.

Some of my symptoms (massive vertigo) were occurring when lying down or getting up as well. What helped me was the following: I have short hair, so when I was about to get up or lay down, I grabbed a big handful of the hair on top of my head and pulled it upwards. It causes a little bit of pain, but it gave some indication to my brain where my head is in space. It might sound strange, but I felt that it helped me.

Every attack I had for over ten years it was continuous every time I opened my eyes whatever position. And each attack lasted 60 hours almost exactly and would then just switch off as completely as if it had never happened. In later years I’d experience BPPV type vertigo sitting up or on lying down intermittently. Didn’t seem to have any permanent effect.

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If left untreated I can see no reason why not but it certainly neither confirms nor eliminates MAV or any other vestibular condition. There really is no one symptom that does that. Frustrating as it is not to know for certain most people eventually settle for treating the symptoms with practical applications as James has written, trying a few commonly prescribed meds and hoping for improvement. Not an ideal situation but in many cases it’s the best one can obtain. In such circumstances reading Dr Beh’s book would certainly be an option that was never available to me. It was only written last year in Lockdown. I’d certainly recommend it.

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I’m really thankful for your replies.
Thank you very much for your kind words and support.
I can not experience how each of you feel those symptoms, but I’m really starting to think I’ve got something else rather than MAV, because those symptoms are so violent and terrifying that I believe someone who has them couldn’t be calm at all.
I’ve had them for the past one year but it’s just humanly impossible to get used to them or ignore them. I doesn’t matter if you “die” by them, the most important is that there’s not even one possibility to be able to calm down and sleep well with these. I need 2-6 hours to fall asleep because of the unbearable motion. It’s like the whole body is floating VIOLENTLY in the space. I have to tighten up my muscles 24/7 so I feel a little less of this and can think. There’s not a minute in the day I’m able not to tighten my muscles and relax. The more calmed and relaxed I am, the more I feel it. It’s not just a sense of motion, it’s incredibly intense and violent and it’s totally unpredictable. It’s not just the sense of moving in one specific direction which the brain can somehow get used to and adjust to.
I feel I could lose my consciousness at any second when I’m lying down. Since I remember myself I’m experiencing more than 150 different symptoms because of POTS and a genetic tissue disorder. Except from the feeling of Atrial Fibrillation, there’s NOTHING like this terror.
It’s a living torture. And I feel unbearably alone to this.

Sadly you are far from unique. It can be really awful. I had suicidal thoughts at one point but some mild medication and a realisation that I had people who depended on me sticking around brought me back from those feelings.

Just read the title of my diary will give you some idea of what I went through. (Linked in my User Card)

Trying to deal and accept the symptoms especially when they’re 24/7 is incredibly difficult. Im doing that myself and a few days ago I cried in my bathroom cause I was just overwhelmed. But I guess I do have times when I’m ok not 100% but more like 40%.

If you’re concerned it’s Mdds, the dai protocal would be used to help alleviate symptoms. Check out the vertigodoctor on Instagram. It’s a huge help

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I had almost exactly what you are describing 24/7 and I mean all day everyday until I got diagnosed and treated with meds. They got my life back. But I’m in a relapse right now and kinda back to square one
I think a diagnosis and meds would help !

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I feel exactly the same as you unfortunately it’s horrible I’ve been with this for two years, sleeping sitting walking being still feels like I’m moving your head it hurts and it feels weird … it’s 24 hours a day, 7 days a week I would like to die

Valentina, so sorry to hear that you are suffering too. Who have you seen and what treatment have you had? Perhaps you’d consider introducing yourself in #im-new-let-me-introduce-myself ?

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Well, the truth is that the doctors here in Spain do not know much about the subject, I am desperate I have taken sibelium and I have recovered 40% because I could not walk, speak, breathe or bathe alone since the vertigos were very strong then I took topamax, stugeron velafaxine propanadol and the results are not good, my symptoms started from fainting

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I have very similar symptoms. I have had the feeling of constant rocking since 2013. I have been diagnosed with vestibular migraines and Persistent Postural Perceptual Dizziness PPPD. I can only lay on my right side.