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Woke up dizzy, heart pounding, neck ache


The neuro-otologist I saw told me my MAV was ‘multifactoral’. (Gave him goid reason to look no further I suspect). I’ve since read the older one is the more likely one is to experience dizziness and if one just happens to be on several meds, particularly five or more, one’s chances of dizziness increases immensely. Helen


Hi. It is too easy to put a name on it without getting to the root cause. The good old UK NHS is just guessing half the time.It seems to me they want you to accept that and then you won’t bother going back.R.


Hi. I agree the spinning is the worst! How long does yours last and is it the rotational type. I would do anything not to get that again ever.R.


Yes, I wasn’t t accepting the fact that this its a chronic condition as I was hoping to get back to my normal self. But II’m finally realizing now that this is a lifelong condition that I have to come to grips with and manage without letting people or what they think get in the way. I am just grateful that I don’t have something worse that this. I know I can manage this and feel better with everyones help on this forum. Sister-in-laws can say the funniest things.


The first few times it happened it was horrible. 4 hours I couldn’t get up or move before it subsided. After about three to five acute episodes I then got the lightheadedness and dizziness, weird eye flickering, photophobia, photophobia, and all the rest. It is weird now the only time when the spinning is ready to start is when I wake up from sleep especially lying flat. I now sleep elevated and it will just happen occasionally when I go off the diet or start being lax. I am realizing this is something I have to stay on top of. .


Hi. I used to get it when I got up too. It also lasted several hours. I have a raised pillow. Think it might be a trapped nerve in the neck? I got it like that for years but in Feb.2017 it turned chronic and now happens any time it wants!The spinning is awful isn’t it?Mine is caused by a combination of things probably. What a nightmare. Hope you are having a better day.R.


My doctor said my neck is also playing an issue along with the MAV. I definitely believe it is a trapped nerve too. I am now trying to be consistent with my stretches and strengthening exercises for my neck as I put that on hold to concentrate on my MAV but my doctor said once we get the MAV under control then we have to address the neck because that can trigger MAV symptoms. I am now being diligent like I said with the stretches and strengthening and watching my posture and not lifting heavy stuff anymore. Today was a good day. I was very aware of all my triggers and keeping my head and neck in correct alignment.


Yes, keeping core muscles strong in the neck and back is a good thing for balance I think. I’m just finishing up a round of physical therapy and its been helpful, although gotta be careful if you have positions that aggravate MAV. I fortunately don’t seem to have any.


I have position that aggravate it. Since I was rear ended and ended up with two whiplash injuries hyper flexion and hyper extension make it worse. I avoid these two position.


But, if memory serves me, and unless things have changed for you since, don’tbI remember you saying you didn’t suffer true rotary vertigo anyway? Helen


Helen, Help me understand this vertigo problem better. The first day this happened was August 2017. I was looking down and then all of a sudden I started to feel a little bit lightheaded. I had plans to go out that evening but went and just didn’t feel that great. I came home, got out of the car and just made it up the stairs to the couch because the whole room was spinning around and around and around. I had to sit completely still until that sensation stopped. It happened again. I got into my car and drove down the road then I started to feel weird. I turned around and went back home. This time I just made it up to the couch and the spinning was 10 times worse. I sat on the couch for four hours before I could get up because the whole room was going around and around. It has been a nightmare since that day. Now after being diagnosed and watching all the triggers, I know just get lightheaded/dizzy, ground moving and things look wavy, or I am ready to fall over and get sucked into the ground. eyes flickering and hard to focus. Other times that I could start to go into a spin but it doesn’t happen. Today I woke up totally weird with a neck ache, headache and I have this throbbing sensation in my neck and I feel like I am moving sensation. Or when I look down I get dizzy. Then again I had a stress day at work so I am not surprised I woke up like this. I hope this stops soon or I am not going to make it to work. Is rotary vertigo when the room goes around? I am totally depressed over this disorder and not knowing how I am going to wake up.


Yes but it also refers to your internal sensation that you are going around. Can be self or environment and neuro-otologist told me ‘Migraine causes vertigo’. I paid him alot for that bit of info and a diagnosis of sorts so I am inclined to believe him there. Vertigo is ‘an illusion of movement’, generally caused by nystagmus I understand which you seem to feel as your eyes flickering. When that’s bad somebody looking can see that movement in your eyes. Not sure how I can help you understand it further. Could try to think it through. Your brain relies on your eyes, eyes and proprioception for balance. When these misfire it tends to become overdependent on whatever else it can use. Commonly eyes, and feet. Your eyes work on horizon, your feet on terra firma, solid ground. Brain reacts less quickly, sudden loss of its support mechanisms (you look at floor, run upstairs, or get in a car with moving horizon and feet from the brain’s perceptive, ‘up in the air’) Result, in hypersensitive state of acute MAV attack equals spinning/vertigo etc.

On a personal note don’t let it make you depressed! Learn about it/understand it, be intrigued by it. You are a nurse if memory serves, you should have an enquiring scientific type mind. It’s nothing magical or mysterious. Just a medical condition, a very frustrating medical condition. Not sure how your car insurance system works, but in UK you wouldn’t be covered to drive until you’d gone three months without any vertigo. Have you contacted your medics about further treatment yet? Helen


When my MAV was episodic my attacks would regularly last 72 hours and I would be unable to open my eyes because of the constant vertigo/room spinning. . After it went chronic some attacks lasted 8 days. I hadn’t had one for more than three years til last week. Now on meds that lasted five days but fortunately provided I kept my head perfectly still with eyes looking forwards, the vertigo stopped.

Alot seem to develop MAV post trauma such as road crash.



That is correct, no rotary vertigo. Just swaying, rocking and trampoline walking.


I learned a lot about diseases and evidenced based treatments in nursing school and work but never even touched on or heard about MAV. This condition is totally frustrating and discouraging me. I have to be alert and on my toes to take care of sick people. I may have to talk to my supervisor about cutting back my hours or temporarily take a leave of absence until I get this more under control and talk with my doctor. I have too much responsibility and patients lives in my hand to make any mistakes while I am feeling dizzy a lot of the times. I am doing so much research and learning allot on this board but I think at this point I am going to schedule an appointment with my doctor asap. Thanks.


The lack of rotary vertigo in some must be significant in some way. Pity medics cannot sort it. The neuro-otologist I saw inferred each type of vertigo and imbalance had different origins. That’s as far as it went though … no further explanation. Helen


Hi Helen. I get rotary vertigo. What does it mean if you don’t get
nystagmus? I haven’t noticed my eyes flickering when I have a attack? Thanks R.


I was terribly pleased to read this. So glad you’ve come to this conclusion by yourself. Was tempted to PM you to suggest it but not really my place. From-my own personal experience I cannot imagine you will control MAV whilst you are still working in stressful environment or by diet alone. Just my take. Helen


Rotary vertigo is the worst and I get all types. If someone said you would never get a attack like that again I would be on cloud nine!R.


No idea, sorry. The nystagmus direction tells the medic where the vertigo originates apparently. I would imagine everybody with vertigo experiences nystagmus but perhaps not. I know not everybody can actually feel it. I never used to but during my most recent attack, last week, I could feel it but not every time I had the vertigo.

I think, if they did, they’d be telling porkies! Until last week I don’t think I had it in over three years. So ‘never’, as they say, is a long time. Too long, it seems. Helen