Positional vertigo/spinning nausea

For the past few weeks I've been dealing with pretty severe positional spinning nausea whenever I turn my head too quickly. The very intense kind that sends the whole universe spinning and gives intense nausea.

It's more pronounced when I'm laying down. Problem is it takes me a lot of time to fall asleep and I often wake up at night and I'm always uncomfortable and basically do a rotisserie chicken routine between both sides and sleeping on my back.

So I can't really help turning my head in bed, it's also kind of a useful function in general. But if I'm not careful it just sends everything spinning and at first it seemed to mostly go away after a few days but it really hasn't, I basically have to take 10-20 seconds just to go from laying on my back to either side, right is worse, or it just sets off.

Anything I can do that doesn't involve seeing a doctor? I have zero meaningful access to health care so it wouldn't do me any good. And frankly I have completely lost trust anyway at this point, I just don't want to deal with this crap and bad medicine at the same time.

Ginger helps for the nausea but I'd really rather send it packing entirely. I've had this before and it usually went away, this time it's really sticking around.

 

I don't know if this
VELPEAU Neck Brace -Foam Cervical Collar - Soft Neck Support Relieves Pain & Pressure in Spine - Wraps Aligns Stabilizes Vertebrae - Can Be Used During Sleep (Comfort, Blue, Large, 3.3″)
would be of any benefit in terms of not letting your head move too quickly?
I hope you can get this resolved soon. It sounds awful and I am sorry it is messing up your sleep!

 

Pinwheeling. I get this sometimes when I am laying down. It's really disconcerting. I've gotten so bad I could not do anything but try not to puke. It's like my head is moving desperately to turn behind me, and my eyes are lagging behind and trying to catch up. Only, I'm not moving

There are exercise depending in the cause. I tried them once years ago. They didn't help. Now, I try to shake it off. I've been fortunate in that these episodes, although almost daily, are fleeting. I just shake my head vehemately. So far that has worked. But like I said, there are exercises depending on if it's your inner ear and if it's crystals etc etc.

 

If your balance is completely off too, it could be labyrinthitis. It's often caused by a virus, and it can hang around for an absurdly long time. It's different to positional vertigo, as it involves more falling over, can be triggered by any movement (or none at all), and often worsens with air pressure and temperature changes. Not a fat lot you can do about it other than wait for it to go away, though fluticasone nasal spray might help calm down any inflammation.

Whatever it is, I feel for you—I've had vestibular problems all my life, and it can be really miserable. Hope it settles down soon.

 

This vertigo/spinning nausea is truly awful, and I am sorry you are suffering from it right now, @rvallee. I, too, have experienced it many times. At one point I consulted an ENT doctor who after testing said it was quite severe. He said he would have been sending me for an MRI had I not brought in an MRI report from a prior consult. Instead, he sent me for vestibular rehab by a physiotherapist especially trained in this area. He also prescribed the diuretic maxzide which I continue to take for this problem. These two gave me about 30 percent improvement. In her report back to the doctor, the physiotherapist stated that there is something wrong with how my brain and vestibular system are communicating. During my long journey with ME/CFS, before several particularly severe spinning vertigo episodes began, I sensed something noticeably shifting in my brain. I suspect that perhaps this problem is part of the whole neurological aspects of ME/CFS, and often wonder how many other ME/CFS patients experience this. Wish we had some answers.

 

So sorry to hear this, @rvallee. I, too, experience a similar kind of vertigo/spinning nausea sometimes. It's slightly different for me in that it's not more pronounced when I'm laying down. Moving my head or my eyeballs sets it off for me.

It usually happens after I've been exposed to too much sensory input (mainly lights and sounds, but also vibrations from building work etc).

It has also happened a couple of times when I was concussed after fainting because of OI; it was so intense that I couldn't move my eyeballs at all (even with my eyes closed) without triggering it.

The only thing I've found that helps when it happens to me is complete rest, eyes closed, in a quiet and dark room, for as long as it takes.

I hope it eases for you soon.

 

I get this from time to time. So far, it has only lasted a few days at a time so I have not tried anything. I'm sorry I don't have any suggestions. Best wishes, hope it goes soon.

 

Just to say that I've had similar issues since before my ME started. I've been prescribed prochlorperazine in the past, which has helped a bit.

I would second what others have said about the fact that this can go on for weeks, sometimes months, and then resolve. I do not know if the cause is viral in my case, but I treat it as such and rest more and keep particularly well hydrated when I have these symptoms.

A few years ago I began to get particularly acute symptoms when I turned to the left in bed. My GP was not confident enough to attempt the Epley manoeuvre that's used for Benign Positional Vertigo.

I've now simply learnt to never turn my head to the left in bed.

 

With all the usual caveats when suggesting any medication - there may be a few reasons why Phenylephrine might be helpful - it is available in various decongestant over the counter treatments - blocked nose etc.

It's a vasoconstrictor so if the problem is labyrinthitis/vestibular neuronitis it may work to widen the tubes a bit and give some relief. Pseudephedrine does a similar job but I've found that to be intollerable because of 'the shakes' - I get a similar but less intrusive effect from Phenylephrine. Sudafed has multiple formulations using these two drugs - which is OK if you find the added ingredients helpful - but Sudafed Decongestant is straight Phenylephrine hydrochloride - Tesco "Blocked Nose Relief" is exactly the same but half the price. Caution regarding over-use and especially with Pseudephedrine, known addiction effects.

https://en.wikipedia.org/wiki/Phenylephrine

 

I think it's labyrinthitis given how it started. It's just that episodes never lasted this long before but if it's pretty common then at least this tells me something. I saw an ENT a few years ago and was given my only "it's probably anxiety" dismissal, usually it's just a "probably nothing", so I don't have high hopes to do it again.

I just never had it stick around this long, but if it's a common experience, I'll just wait-and-see it. I couldn't really handle something like a brace, even if it would help me. I get uncomfortable too quickly when I can't move and this is already the maximum I can handle, it's giving me pretty bad back pain.

Thanks everyone, I'll do the usually ME thing and endure. Funny how they talk about "managing symptoms" as if it's a special thing, when it really means to endure it.

At least I like the ginger gummies, so I got that going for me.

 

@rvallee

I've had this on and off since the onset of M.E 31 years ago.

In the last 2 years it has come back with a vengeance, worse than ever and has made me terribly sick/ill. The sickest I've been in the last 30 years of having M.E. I thought I contracted Covid. My sinuses and ears are filled with fluid and I've read that anti-histamines might help with this. I haven't taken any yet. It's horrible and I empathize with you. It has settled a bit in the last 6 months and I'm able to go out walking again, but just when I think it's resolved, the morning spinning and nausea comes right back.

I dx myself with vestibular neuritis which can be activated by a herpes virus (EBV).

I also keep a lot of ginger stocked which helps with the nausea.

I saw my GP last March for this issue so she set up an appointment for an MRI to r/o an acoustic neuroma. I cancelled the appointment b/c I wasn't vaccinated at the time and I feel this is viral as dx by a neurologist and endocrinologist years ago after several scans and tests at the hospital.

I don't know what else to add but I hope this will settle down soon for you. Ugh.

 

I can say it's helping at one thing: this is barely discussed, yet seems rather common. I can't remember any study asking for this. And I'm not even sure if I would have answered yes every time depending on when it's asked, it's so easy to forget once it doesn't happen anymore. This used to happen to me about once a year for a while and it had been a few years until now.

This happened to me several times in consults, I answered incorrectly to a question simply because I didn't remember it at the time it was asked and it wasn't present at the time. Then of course it's problematic to go back and change it because that's... suspicious, I guess. Hey it's not as if we warn about brain fog and memory problems or anything like that. Or bring notes that no one wants to read because they want it in our own words for some reason.

The trope is that we think too much about symptoms, when in reality they just keep catching us by surprise because we forget about then quickly.

 

I had it for about eight months once. It was on-and-off, starting with six weeks of having to stay in bed and needing a commode next to the bed because I couldn't get to the toilet, then calming down a bit, then fluctuating between mild and hideous. Then I got it again less than a year later.

Most of the family gets it, as we seem to have narrow ear canals that are easily obstructed. Occasionally it can be bafflingly short-lived, over and done with in a few days. I prefer that version meself.

 

Allergy is one possible source of the problem - there are sprays available e.g https://www.medicines.org.uk/emc/product/22/smpc though if you have access to a GP it's the sort of treatment that might best be discussed with them first.

 

I have bilateral vestibular damage. I was tested and it is pronounced, as I recall. The thing is - and my memory is suspect - I recall the ENTs at this leading research facility opining it could be my brain, that infection may be the cause.

I remember asking them how we could check, and they kidded with me they could not really know for certain until my autopsy. It was funny at the time.

Come to think of it, they weren't smiling.

 

I really sympathize with you, I know, it's really painful.

As already mentioned, it could be a " jolt " of labyrinthitis or benign paroxysmal positional vertigo (BPPV).

A few years ago, I woke up in the middle of the night with endless dizziness and unbearable nausea. Unable to stand without falling, I crawled to pick up the phone to call my Province's " info-santé " line. Listening to my symptoms, the nurse told me to call the ambulance... which I did, despite my pwme reluctance to go to the ER. The emergency doctor examined my eyes movement and immediately saw that it was benign paroxysmal positional vertigo (BPPV) (inner ear crystals moved into the semicircular canals, for me the problem was in the right ear). Holding my head in his hands, he made the necessary maneuvers (movements) to put the crytals back in their place. He told me that in the future, I would be more likely to have this type of vertigo again.

All this to say that if that's it then, there is an exercise that helps me to make it disappear: stand straight then lean your upper body forward in a quick motion, and repeat 5-10 times.

Whatever it is, I sincerely hope you get better.

 

I get it intermittently too rvallee, its miserable. I once had it where i just couldnt lie flat without vomiting at all & had to attempt to sleep on a wedge & only on my left side.

It started for me with the virus that triggered the ME - which involved an 'everything' kind of infection - both ears, chest, sinuses, trachea, throat. It left me with bad continuous vertigo for about a fortnight in the immediate aftermath, & its been intermittent ever since, but it comes in very short episodes - say for half an hour or an hour, or sometimes just a few minutes, but its always positional - it stops if i keep very still and keep my eyes still, either open or closed. Which is fine for an hour or so, even a couple times a day, but the constant kind is horrible.

If its for Benign Positional Vertigo, there are exercises you can do. I haven't tried them because it doesn't last long enough for me to make it worth it, but if you google it I think you'll find them, there might even be some videos on you tube, i think one of them is called the Espley manoeuvre or something, but id try to find out first if they are safe to do if its not BPPV thats causing it - wouldnt want to make it worse.
Getting a medical opinion would be best, but totally understand your reluctance.

Hope you find something that helps

 

The exercise in question is called the Brandt-Daroff exercise. I have had annual bouts of BPV since July of 2000 and do a modified version of the BD exercises whenever it starts acting up. I sit on the edge of my bed with pillows on either side, turn my head 45 degrees in one direction (say to the left) and then lay down on the opposite side (so, on the right side) for 30 seconds or until the vertigo subsides--whichever takes longer. Then sit upright again, face forward, for 30 seconds (or again, until the vertigo subsides). Then repeat in the opposite direction (so turn my head right 45 degrees and lay on the left side). I do 3-5 reps on each side twice a day. You might keep a sick bucket handy.

With this exercise, it usually takes about 4-5 days for it to gradually subside as opposed to weeks if I do nothing or just take antihistamines/decongestants (which is practically as effective as nothing--at least for me).

As I'm homebound and mostly bedbound, going to an ENT is almost impossible. Back in the early 2000s when I could still get to an ENT, he did an Epley maneuver but it was not especially helpful. In 2001 I was sent for vestibular testing. It lasted for 6 hours and basically felt like medical torture (though the lady who did it was very kind and knew how awful it was for patients). As with everything in ME/CFS, the results were "inconclusive," showing that I did indeed have excessive nystagmus and a sort of right-centeredness but otherwise everything else tested normally. Totally made the weeks-long crash as a result of the testing so worth it! /sarcasm

 

Sorry your going through this @rvallee I hope this doesn't go on too long for you.

I've experienced different types of this and only since I've had ME. I am very protective of my head to turn it slowly, not tilt it back too far and wary of getting any bumps to my head.

The last severe type of vertigo I had was caused accidently by a knock to the head, and it wasn't even a hard knock. I could only sleep on my back for the six weeks that it lasted. I felt very weak with it. It certainly is very unpleasant.