Orthostatic intolerance

My OI is much worse in the morning. I start off everyday with hope to accomplish goals. But before I know it I feel more ill, weak, faint etc. I have to lay down. I hate pacing. I really like to accomplish things, and keep at it until they're done. But I'm forced to break tasks down into small bits.

 

Interesting about caffeine. Although biomedical ME experts advise against caffeine. I wonder if the caffeine in tea and coffee have equivalent effects in nOH.

So, what is nOH?

I used to get post prandial exhaustion, to the point where it was like a mini-crash. I would feel weak, unable to walk, and my brain fog would increase. It didn't seem to matter what I ate. It frequently happened.

Now that's a weird set of symptoms to try and explain to a doctor unfamiliar with ME.

 

Neurogenic Orthostatic Hypotension

 

@Mij

Thank you.

 

Webinar with Peter Rowe, hosted by the Norwegian ME patient organisation last week.

Orthostatic intolerance: POTS, hypotension and more.

https://www.youtube.com/watch?v=wfMzBypALDk

 

The sweating/hot flashes segment on how it relates to OI was interesting.

 

I have a question:

So I don't think I have OI, at least I feel fine upright and I really don't feel that it makes me worse in any way. However: I can have serious balance issues in the morning right after getting up and I'm not sure if this can still be a sign of OT or something else.

What happens: I get up from bed and lose my balance right away. No dizziness at all, I also don't feel like fainting etc and I don't even actually feel unbalanced (I have a hard-to-describe awful feeling in my head though - brainfog on steroids). I just start to fall without warning, it feels totally out of my control. Then this lack of balance gradually disappears in 10-15 minutes (while still upright), depending on severity and I'm fine for the rest of the day (at least in this respect).

When I was in my first year, when my disease was the worst, I had this every morning and at a dangerous level: I kept hitting the wall after getting out of bed, it really wasn't pleasant. Then it improved as I improved and it absolutely disappeared when I had that one exceptionally good year. Then as I got worse later, this also returned (on my bad days).

So my question: does this sound like some sort of OI or not really?

Edit: typos

 

I retrospectively now believe I had OI issues long before I was consciously aware of them.

I was not aware of any issues around being upright, though I was aware of being less confident in relation to balance, feeling less confident climbing or totally freezing when walking on a steel net over a four/five story art gallery atrium. It was not so much a fear of heights rather I had somehow lost confidence in my body.

For many years before being aware of having any OI I had problems coming too first thing in the morning and have had to take my time getting up and getting going, though I not thought to relate this to OI prior to now.

One thing I was increasingly aware of was that resting seated had become markedly less restful than resting with my head supported by a chair back, that was markedly less restful than lying fully prone. Initially I explained this by the fact that each required respectively less physical exertion to sustain, however once my OI became such that being upright was more of a limiting factor on my activity than the actual physical exertion involved the activity, I revised my opinion on how restful seating/lying were in line with how horizontal I was being more important than any physical effort to maintain the position.

I suspect that being upright contributed to any PEM resulting from an activity, even though of itself it was at that time not sufficient to stop me doing the activity long before I was aware of any OI issues, just as doing something outside on a sunny day without sunglasses is ultimately more tiring, though at the time I may not be aware of any specific problems with light hypersensitivity.

 

I do have that too. Not normally, not in my everyday life. However, I tried riding an electric scooter and also a bike and I realized I feel quite unsteady on them. Maybe OK in the middle of nowhere but it was way too dangerous for me in traffic. At that point I hadn't ridden a bike in a long time, so I thought I was just clumsy but it was the same with the electric scooter. I'm still not quite sure how much of it is just clumsiness and how much is actual balance issues.

 

This could be vestibular dysfunction. I have this too, it is quite a different from orthostatic impairment but makes it worse. Worse in the mornings after lying down all night.

 

Hm, I'm not sure. If you mean something like labyrinthitis, I've had it once and it was very different with a lot of constant spinning sensation and dizziness and nausea, which I never have with this. However, that was much much worse than these balance issues I have, so I can sympathize, that is something really horrible to have.

 

I've had this many times over the last 30 years, w/o nausea.

I've been quite sick with a vestibular virus these last 2 years. My balance has been very poor, so I went to see my GP last March and she suspected an acoustic neuroma. She booked an MRI but I didn't go b/c of Covid

 

Do we have enough evidence to “refute” the assertion that:

“Orthostatic intolerance in ME is nothing more than PEM. The body uses more energy when upright than horizontal. In some people this will trigger PEM, including immediate warning sign symptoms.”


To me that seems like a plausible explanation.

 

To me, this simply seems poorly worded and vague.

First, pwME can suffer from OI even when not in PEM. Perhaps if they had observed that PEM exacerbates OI symptoms, it may have been closer to the mark.

Second, they appear to be equating energy expenditure with PEM triggers. Maybe so, but it's just fuzzy and simplistic, and seems to omit more OI-specific involvement from organs like the heart and brain.

 

Yes, I think you are confusing different sorts of terms @Yann04.

PEM is not a defined process or thing. It is just the timing pattern of worsening of symptoms that is characteristic of the ME/CFS syndrome. OI tends to be fairly immediate or at least within minutes so pretty much by definition is not 'post' exertional anyway.

PEM is just a descriptive word that is useful for the time being until we have some idea what is going on.

 

I think it is likely that orthostatic intolerance might lead to a feeling of PEM in some or many cases. However at this point we don't know what kind of processes underly PEM and there may very well be similar feelings driven by different processes that we all describe as PEM. For example it is hard to know if delayed headaches from orthostatic stress in the context of POTS/ME is PEM or an entirely separate phenomenon.

I certainly reject the claim that orthostatic intolerance is a result of energy use though. I think it is much more likely to be an issue with the mechanisms that regulate blood flow. Dizziness when upright, pooling of blood in extremities, changes in blood pressure and heart rate, fainting, shortness of breath doesn't seem consistent with a lack of energy.

 

Thanks for the explanations. I definitely feel it has something to do with PEM in my case, but yes at the end of the day PEM is such a vague concept anyways.

 

For me OI is more noticeable during cognitive exertion. Lying down alleviates it within a short period of time, but lying down does not alleviate autonomic symptoms from delayed PEM.

 

To me I get similar warning sign symptoms when overexerting in other ways, when in an upright position. And then I get delayed PEM. Because of this I’m 100% horizontal.