Orthostatic intolerance

[Jonathan Edwards]

This discussion has been split from the 2019 NIH conference thread

She also said that patients often don't realize they have it

I don't understand that. Orthostatic intolerance is the inability to tolerate standing up. By definition you know you have that if you have it.

Maybe Dr Bateman is referring to haemodynamic changes that might be thought to cause OI but as far as I can see it is not at all clear that they do.

 

[Hoopoe]

I don't understand that. Orthostatic intolerance is the inability to tolerate standing up. By definition you know you have that if you have it.

The reason I suspect OI is underdiagnosed because mine became quite noticable, and I was still having doubts and didn't believe I had POTS (I knew it was some form of OI but didn't recognize it as POTS), even though a test confirmed it. The test made me realize that the symptoms during orthostatic stress wax and wane and can appear with a delay. I then also realized that I've had similar symptoms for many years, just much milder. If they are mild then it's not readily apparent that this has anything to do with being upright. It will just be this weird thing that happens for no apparent reason.

 

[Hoopoe]

Mild OI is hard to describe: just a vague sensation of feeling unwell and being unable to connect to other people, having embarassing difficulty paying attention or doing mental tasks (that include conversation). A bit drifting away from the present and being unable to shake it off.

OI can also be caused by sitting on a chair, it will just take longer and produce milder symptoms.

At least that is what I think is happening.

 

[Jonathan Edwards]

If they are mild then it's not readily apparent that this has anything to do with being upright.

I am afraid I don't buy this. If it is not clear the symptoms are due to being upright maybe there aren't. We don't actually know what mechanism if any connects patterns of haemodynamic disturbance like POTS or orthostatic hypotension to OI in ME/CFS.

Dr Bateman's slide looks to me confused. How do we know what relation these symptoms have to associated OI or POTS or whatever? They may be associated but then they are part of ME. I sense muddled thinking.

 

[Hoopoe]

Yes, maybe Dr Bateman is wrong, but I think she is right, based on my own experience. I think I've had mild OI for a long time. There is a family member that fainted often in her youth. My mother spends a good portion of her day on the couch with legs at a higher level than the head. She probably has OI too. It just never became bad enough that it could be readily recognized as such.

PS: I think she is right that patients are often not aware they have it. They know they have symptoms but they never arrive at a point where they think "there is a specific problem with being upright causing these symptoms". When the OI is more severe then it is much easier to recognize it as such.

 

[Sasha]

I don't understand that. Orthostatic intolerance is the inability to tolerate standing up. By definition you know you have that if you have it.

Actually, I didn't realise for years that I had OI - I thought I was just too tired to stay upright.

 

[Sunshine3]

I don't have Pots but I have severe OI. I cannot tolerate sitting upright for more than 20 minutes. I am 22 hours a day horizontal. I feel more comfortable walking to kitchen or bathroom than standing for any length of time. I feel like my heart can't sustain me. All since M. E onset... Never a health problem until I was struck down after a sore throat and here I am 2.5 years later housebound unable to look after myself. My Holter monitor showed ectopic beats, nothing major. I had negative tilt test but my symptoms are far worse now than in 2017.

 

[Ravn]

I don't understand that. Orthostatic intolerance is the inability to tolerate standing up. By definition you know you have that if you have it.

It's amazing what you can explain away when you don't know what you're looking for. At the risk of coming across as rather stupid here is my example of explaining away rather obvious OI symptoms for decades: I thought they were social anxiety due to culture shock.

As a child I went through a period of fainting whenever having to stand still for a few minutes. I was told it was just because I'd grown too fast and it would go away. It didn't quite go away but did get a lot better and I thought no more about it.

In my teens I was in no way socially awkward. Went to plenty of parties which, in the circles I moved in, involved alternating dancing - moving rather than standing still - with sprawling across the furniture or floor, drinking lots of beer and eating lots of salty snacks. I never drank much (early sign of alcohol intolerance?) but I danced and sprawled and hoovered up the salted peanuts and was very happy and comfortable.

Then I moved and suddenly parties involved standing around for hours, drinking, and waiting for the BBQ to finally be ready. And suddenly I couldn't think of anything to say, could barely follow the conversation after a while, started cold-sweating and feeling nauseous and shaky. I really thought that I just didn't fit in with those people and that that was making me anxious. Even after I realised that I was perfectly comfortable with those very same people when sitting down I thought it was because the sitting down was in smaller groups and I had become anxious about larger groups. Not that I could explain why I should have suddenly become anxious in that way, I'd never been, and still am not, particularly anxious about anything much. But it was the only explanation I - and anybody else - could think of.

It wasn't until after I was finally tested for OI and POTS that I put 2 and 2 together. Standing up = feeling lousy, sitting/lying down = feeling better. How did I not figure that out sooner? Well, I'd always instinctively avoided situations that made me feel unwell. I was that annoying person doing a lot of tripping back and forth when waiting at the checkout (back in the days I was still out and about). And when I was forced to stand still - funerals were bad - I'd faint but blame it on the sun or some other convenient reason.

 

[BurnA]

I am afraid I don't buy this. If it is not clear the symptoms are due to being upright maybe there aren't. We don't actually know what mechanism if any connects patterns of haemodynamic disturbance like POTS or orthostatic hypotension to OI in ME/CFS.

When I was first ill, I used to lie down as soon as I got home from work, not because I was so exhausted that I had to lie down, but i just felt the urge to lie down, and I felt better.

I had no idea what OI was so i would have to say I didn't know I had it. I just knew I felt better lying down.

 

[Sean]

It's amazing what you can explain away when you don't know what you're looking for.

This.

When you have no explanation, but really really need one, at the most basic practical survival level, your imagination takes off in the search for a causal pattern.

Some interpret this as pathological deviance. They are wrong. It is the only sane option in the circumstances.

It also ruthlessly exposes any ignorance, prejudice, and limitations in yourself, and in the experts whose paths you will cross along the way.

 

[Hutan]

I am afraid I don't buy this. If it is not clear the symptoms are due to being upright maybe there aren't.

Maybe it's the name 'orthostatic intolerance' for what's going on that's the problem - suggesting we only feel bad when upright. If in fact it's a circulatory problem, then we might also feel somewhat bad lying down.

And actually, being upright but walking might be fine, because the movement helps to move blood around. And, as @Ravn pointed out, often the times of standing might be combined with chatting with someone or standing in a queue in a noisy busy environment or have required physical and mental exertion to get to that place - so it is easy to attribute the 'feeling bad' to things other than the standing.

So, if we aren't feeling super lying down, and we feel ok-ish walking, and it's easy to find reasons other than being upright to explain why we feel bad standing or even sitting, then it's not surprising that we don't necessarily realise we have "orthostatic intolerance".

 

[OverTheHills]

Ditto. I only realised I had POTS (years after I got ME) when I was given beta blockers (propanolol) for my Hyperthyroid problem, and couldn't wean off a low dose without my "ME" getting much worse. Then the penny dropped and i asked (nagged repeatedly) for a tilt table test and eventually got one. Positive.

I certainly didnt find my POTs symptoms of extra weakness, mental confusion, generally feeling unwell, a bit sweaty and so on easy to distinguish from the ME symptoms without the benefit of hindsight. Like others here, i find walking around is much better than standing still, delay etc.

With ME you have hours worth of weird symptoms you could talk to your GP about but eye-rolling or other signs of impatience set in pretty quickly. I may have been asked if i felt faint or lightheaded and my answer then and now would be no. So no medic ever thought of OI, I did because i was familiar with POTS as a common comorbidity of ME and a common treatment for POTS seemed to be working for me.

In hindsight I used to get milder POTS as a teenager, when forced by my parents to do shopping which involved a lot of standing still or walking very slowly. I used to wonder why it made me feel so awful and tired. Never liked shopping much as a result.

 

[Yuno]

The reason I suspect OI is underdiagnosed because mine became quite noticable, and I was still having doubts and didn't believe I had POTS (I knew it was some form of OI but didn't recognize it as POTS), even though a test confirmed it. The test made me realize that the symptoms during orthostatic stress wax and wane and can appear with a delay. I then also realized that I've had similar symptoms for many years, just much milder. If they are mild then it's not readily apparent that this has anything to do with being upright. It will just be this weird thing that happens for no apparent reason.

The same for me. Ive had it for months in a mild form and didn’t notice much at all. It didn’t show up over night, but developed gradually.

 

[Inara]

By definition you know you have that if you have it.

I just realized during tilt table test that OI induces a heavy fatigue plus cognitive problems in me, like "brainfog" (and other symptoms that reminded me of hypoxia experiences I've made elsewhere), something I put on the ME symptoms list. If it weren't for the other symptoms and the knowledge about where to put them (OI and not ME itself) I would never have thought to have OI. By the way, doctors neither. So it would remain undiagnosed hadn't I read on the internet.

 

[Inara]

Orthostatic Intolerances - notes that prolonged bed rest will cause it rather quickly.

I found that part "funny" - you cannot stand too long, you cannot sit too long, and you shouldn't lie too long, and ME makes it difficult to constantly switch between standing, sitting, lying - so what can you do?

 

[dreampop]

I found that part "funny" - you cannot stand too long, you cannot sit too long, and you shouldn't lie too long, and ME makes it difficult to constantly switch between standing, sitting, lying - so what can you do?

So I'm not the only one who feels like garbage lying down? Spine can never get comfortable, I wake up like I got hit by a truck.

 

[Milo]

I don't understand that. Orthostatic intolerance is the inability to tolerate standing up. By definition you know you have that if you have it.

When i got initially sick, i presented with a lot of symptoms that did not make sense. One of them was that i was feeling a bit better laying down flat rather than sitting up or standing up. One time visitting my dr and waiting for her in the exam room, i used her exam bed to lay down. She scolded me big time for it, and told me i was not sick.

In the end it took a visit to dr Klimas to tell me it was not in my head. But before being diagnosed with ME, all of these symptoms did not make sense to me or to my doctor. It’s now been 10 years. I still have OI and POTs and still feel the ‘gravity pull’ every single day.

 

[obeat]

I don't have Pots but I have severe OI. I cannot tolerate sitting upright for more than 20 minutes. I am 22 hours a day horizontal. I feel more comfortable walking to kitchen or bathroom than standing for any length of time. I feel like my heart can't sustain me. All since M. E onset... Never a health problem until I was struck down after a sore throat and here I am 2.5 years later housebound unable to look after myself. My Holter monitor showed ectopic beats, nothing major. I had negative tilt test but my symptoms are far worse now than in 2017.

I am similar. I've never had elevation of heart rate or changes in blood pressure so it's not POTS. It started to get worse during the perimenopause, although I was still able to lie on sofa during the day. It became considerably worse with the menopause, so now in bed.
I put it in the NIH form as an area for research.
Bedrest may well cause temporary POTS but this is different.
I preferred dealing with PEM because I could at least do things. Severe OI makes that impossible.

 

[chrisb]

The reason I suspect OI is underdiagnosed because mine became quite noticable, and I was still having doubts and didn't believe I had POTS (I knew it was some form of OI but didn't recognize it as POTS), even though a test confirmed it. The test made me realize that the symptoms during orthostatic stress wax and wane and can appear with a delay. I then also realized that I've had similar symptoms for many years, just much milder. If they are mild then it's not readily apparent that this has anything to do with being upright. It will just be this weird thing that happens for no apparent reason.

Surely, in that tweet from Cort, a prostrate drug is only doing its job if it causes OI.

 

[NelliePledge]

Maybe it's the name 'orthostatic intolerance' for what's going on that's the problem - suggesting we only feel bad when upright. If in fact it's a circulatory problem, then we might also feel somewhat bad lying down.

And actually, being upright but walking might be fine, because the movement helps to move blood around. And, as @Ravn pointed out, often the times of standing might be combined with chatting with someone or standing in a queue in a noisy busy environment or have required physical and mental exertion to get to that place - so it is easy to attribute the 'feeling bad' to things other than the standing.

So, if we aren't feeling super lying down, and we feel ok-ish walking, and it's easy to find reasons other than being upright to explain why we feel bad standing or even sitting, then it's not surprising that we don't necessarily realise we have "orthostatic intolerance".

This could be me I don’t think I have OI it’s never been explored by GP or in my one private consultation. I have hypertension so didn’t think POTS could be relevant to me. But my very worst thing is standing in a queue or milling at a social event. I have to sit asap. Also when my energy has completely drained due to over exertion I have to lie down. When I worked at home I would sit at my desk concentrating really hard for an hour or two then need to lie down for around 30 minutes until I could feel like I had a bit of charge on my battery. Maybe I’m someone who has mild OI?? my ME is mild/moderate maybe that is relevant.