Vestibular issues

[Mij]

Split from this thread.

@Forbin I was reading up on vestibular exhaustion. Interesting how managing it is similar to PEM avoidance.

"If you have a chronic vestibular disorder, you probably struggle with fatigue that may rob you of your spontaneity. When you’re feeling well, you may tend to overdo and then pay for it later".

"It’s important to learn to deal with fatigue and get needed rest. It may require making tough but necessary decisions to cut back. This is a big change for many people".

"Particularly critical is recognizing early indicators of fatigue so you know when to pull back. Learn to do a selfcheck; then do what is necessary to regenerate yourself. You need to do what is best for you".
Coping with fatigue To avoid overexertion, learn to identify and set priorities. Evaluate what is important by asking yourself: What tasks absolutely need to be done? Do I need to be the one to do these tasks, or can someone else do them?"

 

[Mij]

omg . . .

A damaged vestibular system depletes energy because the brain has to sort and interpret many false messages about spatial orientation, muscles must work vigilantly to help maintain balance, more effort is required to keep the vision focused, and a person must work harder in order to concentrate.

 

[Mij]

This might be what Dr. Moreau is seeing in his "type 1" vertigo ME subgroup regarding exertion?

 

[TigerLilea]

omg . . .

A damaged vestibular system depletes energy because the brain has to sort and interpret many false messages about spatial orientation, muscles must work vigilantly to help maintain balance, more effort is required to keep the vision focused, and a person must work harder in order to concentrate.

I know someone who fell off of a ladder and hit her head on the wall on the way down. The crazy thing is she only fell about a foot. She hasn't been able to work since then as she now has a vestibular injury and suffers with bouts of severe vertigo and she can't read anymore as her eyes can no longer focus at the same time.

 

[Mij]

@TigerLilea that is just terrible. So many things can cause this, viruses, falls, explosions/blasts, sports etc It's very debilitating.

 

[Hoopoe]

@Forbin I was reading up on vestibular exhaustion. Interesting how managing it is similar to PEM avoidance.

"If you have a chronic vestibular disorder, you probably struggle with fatigue that may rob you of your spontaneity. When you’re feeling well, you may tend to overdo and then pay for it later".

"It’s important to learn to deal with fatigue and get needed rest. It may require making tough but necessary decisions to cut back. This is a big change for many people".

"Particularly critical is recognizing early indicators of fatigue so you know when to pull back. Learn to do a selfcheck; then do what is necessary to regenerate yourself. You need to do what is best for you".
Coping with fatigue To avoid overexertion, learn to identify and set priorities. Evaluate what is important by asking yourself: What tasks absolutely need to be done? Do I need to be the one to do these tasks, or can someone else do them?"

This documents reads like competent recommendations for living with ME (or at least there is large overlap). That could mean that the underlying biology in ME and vestibular disorders is similar (perhaps not in the location being affected, but in there being some control system that is affected). Or maybe PEM does somehow result from vestibular dysfunction!

@Jonathan Edwards you should check this out

https://vestibular.org/sites/default/files/page_files/Fatigue Stress and Responsibility.pdf

 

[Forbin]

I'd say there's no question that compensating for a balance disorder requires a lot of mental energy and that that can become exhausting. It also requires a lot of conscious attention which means there's not much left over for other things, especially when you're on your feet and in motion. My experience, however, makes me doubt it's at the root of the fatigue in ME patients with balance problems. In my case, sitting still greatly lessened the mental demands of dealing with my balance impairment, but it didn't seem to really effect the level of my "physical fatigue," just my "mental fatigue." I may be underestimating the physical energy required for all the constant adjustments to maintain balance, though - although people without dizziness have make those adjustments, too - albeit unconsciously.

On my doctor's suggestion, I tried to take niacin to counteract the possibility that vasoconstriction was at the root of my dizziness. Niacin can dilate the blood vessels temporarily, but I found it impossible and somewhat dangerous to regulate. Sometimes I would get hardly any reaction at all, but sometimes I'd flush and sweat so heavily that I seemed ready to pass out. Niacin's dilation of the blood vessels was apparently producing a significant drop in my blood pressure. No amount of "acclimatizing" myself to niacin could eliminate the risk of getting this reaction - and there was no way to predict when it would happen. Sometimes, I'd take the pill and nothing would happen. Other times, it nearly put me on the floor. At any rate, it didn't seem to help my dizziness at all.

How, if at all, does that fit with ME patients' reduced red blood cell deformability? Does it compound the 'brain fog' (and other symptoms where RBCs go)?

I'd certainly think that the combination of vasoconstriction and reduced red blood cell deformability would be worse than either alone. Less pliant blood cells would seem likely to have a tougher time getting through narrower, vasoconstricted blood vessels.

 

[Mij]

@Forbin a sudden viral vertigo attack caused my ME onset. The injury from that episode changed something in my brain. For years I felt this rocking/swaying side to side movement sensation in my head and the only immediate relief I got was lying down. After 6 years it went away, but the exhaustion from sitting upright for too long and too much movement around me continues.

 

[Forbin]

@Forbin a sudden viral vertigo attack caused my ME onset. The injury from that episode changed something in my brain. For years I felt this rocking/swaying side to side movement sensation in my head and the only immediate relief I got was lying down. After 6 years it went away, but the exhaustion from sitting upright for too long and too much movement around me continues.

This sounds a lot like what happened to me: post viral onset, intense dizziness for several years, which improved maybe 50% over a period of months in the fourth year. Then the rate of improvement plummeted, but not to zero. It took 10-15 years for most of the remaining dizziness to abate. I no longer feel like I'm in constant motion (except when I've pushed myself too hard), but I still feel like my eyes still do not always converge correctly.

 

[Jonathan Edwards]

@Jonathan Edwards you should check this out

That document looks pretty confused to me. I have suffered from vestibular problems. I had a protracted period of vertigo and now I have virtually no vestibular function so I just have to be careful I do not fall over. There is no vestibular function there to give me vertigo any more. I don't think vertigo produces fatigue. It is exhausting when you have it trying to ensure you control it but there are ways to control it by keeping still that allow you to function pretty normally in that position. It didn't;t seem to me in any way like what people describe with ME. All the time I knew I was perfectly fine except that my vestibular system was out of synch.

 

[Hoopoe]

Okay, but why does this document seem to describe something resembling PEM and advises something that sounds like pacing?

 

[Jonathan Edwards]

Okay, but why does this document seem to describe something resembling PEM and advises something that sounds like pacing?

I think the person writing it may be confusing vestibular problems with ME. As we have discussed on various threads there are a number of health care professionals around who may be well intentioned but often provide patients with very garbled accounts of how different conditions are related. Maybe it is a bit like specialists dealing with craniocervical instability starting to suggest that it results in fatigue and even PEM. There is an awful lot of misinformation out there it seems.

 

[Hoopoe]

You're right. It could also be that (undiagnosed) ME and vestibular problems occur together often enough that at least some vestibular doctors would independently discover PEM and pacing.

 

[Jonathan Edwards]

I also think it would be very easy superficially to confuse the two situations. If you have active vestibular problems it is exhausting trying to do anything and you feel dreadful for a while after - but only for a while until things have settled. It also makes sense to 'pace' just in the simple sense that it is impossible to cope if you do not limit what you do.

 

[Lidia]

I had what was thought to be a bout of severe vertigo, but in my medical notes it says “+ve cerebellar signs” so I wonder whether my inability to walk and subsequent clear ct scan were cerebellar dysfunction and not vertigo? I was extremely stressed at the time, beyond what I think a person should endure, just as a matter of interest. When I get stressed now I have issues which are like vertigo. But Stemetil doesn’t work for it.

I know an anecdote means nothing, but I just wonder whether “vertigo” is too broad a diagnosis?

 

[Kitty]

I don't think vertigo produces fatigue. It is exhausting when you have it trying to ensure you control it but there are ways to control it by keeping still that allow you to function pretty normally in that position.

I agree. I've had vestibular problems all my life, and they are tiring – but it's not the same as fatigue. You also learn to manage them, even as a small child. Nowadays, due to adaptation and avoidance of triggers, the only time I have significant problems is when travelling (Phenergan helps with the inevitable motion sickness), and when I have colds.

When I get stressed now I have issues which are like vertigo.

I've also had this at times of extreme stress, such as when my parents were close to the ends of their lives. Vertigo meds didn't help at all. I didn't seek treatment for the stress, as it was a normal reaction to the situation, but I guess if it were ongoing or didn't have an obvious cause, that'd be the way to approach it.

 

[Mij]

The thing is, the actual vertigo does not cause energy depletion for me, but when I'm over exerting (physical and mentally) that swaying sensation in my head starts up and I need to lie down for it to stop.

Back in 1992 when I 'recovered' from my sudden viral onset after being ill for 8 months, I returned to work, it was within 3 weeks I started feeling that swaying sensation again and wanted to lie down. It was building up but I did not feel any fatigue (yet). I was waking up feeling unrefreshed and walked home from work like a drunk. After 3 weeks I could no longer walk a straight line, I did not have vertigo but my head was swaying and I became exhausted very quickly.

I am curious as to whether this is what Dr. Moreau is observing with his "stress test" with the sub type 1 vertigo ME pts.

 

[Forbin]

Nowadays, due to adaptation and avoidance of triggers, the only time I have significant problems is when travelling (Phenergan helps with the inevitable motion sickness), and when I have colds.

A few years back, I took and overnight train ride and was surprised at how "dizzy" (the "bobbing" back and forth feeling) I was when I got off they train. It was like I was back to where I was 15 years earlier. I'm not sure if it was the motion of the train or the change in altitude over a mountain range that caused this. Fortunately, it resolved on its own in a day or two.

What's odd is how much this resembled the dizziness I've experienced with ME.

There is a kind of "bobbing" dizziness brought on vehicular travel (boats, cars, trains) called Mal de debarquement syndrome (MDDS) (French for "illness of disembarkation"). Unlike the temporary "land sickness" that many experience after getting off a boat, MDDS is persistent and debilitating.


There was a group at Mt. Sinai hospital in New York City that developed a fairly successful treatment for MDDS. It involved putting a patient in a chair and having them tilt their head as rotating bars were projected on a screen in front of them. It sounds like something out of the 1960's TV show "The Prisoner," but they saw improvement in 70% of their patients in a clinical trial. Though that trial is over, they apparently still treat patients.

Link: Readaptation of the Vestibulo-Ocular Reflex Relieves the Mal De Debarquement Syndrome

Perhaps an infection can make its way into the vestibular mechanism of the inner ear, or some other part of the brain, and screw up the "Vestibulo-Ocular Reflex" in such a way that it can't right itself.

 

[TigerLilea]

There is a kind of "bobbing" dizziness brought on vehicular travel (boats, cars, trains) called Mal de debarquement syndrome (MDDS) (French for "illness of disembarkation").

I don't have Mal de debarquement syndrome, however, whenever I go on an elevator, for a few minutes after I get off, I still feel like I am moving. I've always had this, long before getting ME.

 

[Forbin]

I'd been on trains, planes, boats, amusement park rides, etc... prior to ME and never developed anything more than temporary unsteadiness, but ME began for me with an "out of the blue" attack of dizziness that seemed like it was it was going to resolve in a few days, but then got worse again and persisted.

What's interesting to me is the similarity between the "bobbing" dizziness of MDDS and what I've experienced with ME. The "Vestibulo-Ocular Reflex" sounds like it has something to do with how the eyes react to changes in body/head position as sensed by the inner ear. A long term failure of that might well wreak havoc with one's sense of balance.