Orthostatic intolerance

I agree. I am not yet sure that a special term is awfully helpful in the context of ME. It might be much better if those who felt much worse on standing were recorded as feeling much worse on standing. Then people might not jump to conclusions about the relevance of tilt table tests.

 

I don't know enough to debate the value of tilt test but there is a certain amount of autonomic testing that can be done for OI apart from that, in order to try to find out what flavour of OI you have and to point to possible suitable treatments. So I think it's worth knowing that this is a specific symptom in its own right, and getting on the investigation/treatment track.

Some PWME seem to have done very well on their OI treatments and have regained a lot of functionality.

 

BTW, I have to go and lie down now!

 

Regarding OI debate i would like to ad my own experiences. When i was standing my heart rate got much higher. I could do bicykle for 10 minutes without any problem once the tempo was slow (under 100 beats per minute). But when i forced to drive faster i started to felt dizzy already after 2 minutes. Then i had a special kind of heart weakness during 1 day or so after the hard exercise. I dont know how to describe it exactly. My cardioligist told me that it's very interesting. My heart looks ok but she told ne that it gets bad inputs. Maybe it has sonething to do with general nuscle weakness because heart is also muscle. I think there is definitly a cardiovascular problem in ME but if it's OI or anything else i dont know. I woul ad that when i improved my heart rate got much better and diziness also disappeared.

 

My experience of OI:-

Before I used a wheelchair, I used to carry a light folding stool with me so that if ever I had to stop walking, I sat on it until able to move again.

I did this in queues and even at traffic lights both in UK and US, and ignored any funny looks. I just felt ill when standing still, whizzy, losing concentration etc.

I never asked for a diagnosis for this and still haven’t (which is weird in a way) although I now assume it is OI.

@Sasha - do you have a specific treatment for this? I don’t but will ask Dr Bansal about testing when I next see him. What form does testing usually take?

 

It's a big topic, Binkie! I've tried lots of treatments and none have made any difference.

Here are some good resources:

https://www.dinet.org/

https://www.dysautonomiainternational.org/

You might want to start with this:

https://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf

 

My experience of OI, just for fun: nearly all the women in my maternal family were 'fainters' from an early age, though only two developed ME.

Coping strategies I learned as I grew up included always keeping coins in your pocket to drop if you felt dizzy in a queue, as an excuse to get down on all fours; feigning backache on entering a pub to make sure your friends sat down instead of standing; and pretending to be cold so you could hop from foot to foot without looking too idiotic.

I was surprised to discover there's a name for it, and that it's associated with ME. I assumed for decades it was just a peculiarity of unusually tall, slender women – which might even be true, for all I know.

 

Thanks @Sasha.
Plenty to read there.

ETA: Sorry to hear none of treatments helped.

 

I’m not unusually tall (5’7”) and definitely not especially slender, but I was a fainter my entire childhood. I outgrew it after puberty, although I continued to struggle with low blood pressure at times. Fainting was often accompanied by a nosebleed, and I have woken up in a puddle of blood just about everywhere imaginable. Never raised HR.

POTS (that I got with ME much later) is something totally different, I don’t usually have low blood pressure anymore, and never faint, just feel awful and of course my heart will be racing.

Two completely different things, but possibly two sides of the same coin? I share the fainting part with my maternal grandmother, who does not have ME but has always struggled with migraines. No one else in my family have ME or any sort of fainting/blood pressure issues.

I wanted to add another observation about POTS in general. Mine will usually get worse if I’m tired, the day after an active day for instance. This is not PEM dependent, but will happen even if I didn’t do enough to trigger PEM but enough to be tired the day after. I have considered that I might be less hydrated etc., after a day of exertion, but there doesn’t seem to be any correlation.

 

Interesting – it's probably not that uncommon, especially after growth spurts, but we just stayed like that The men in the family don't seem to be affected, but one of them did produce a 6' daughter who's also a fainter/faller. I'm a shortie at 5' 9"; my grandmother, born in the 1880s, was 6' 1".

My tendency to fall starts with lightheadedness and brain fog, like the rest of the coven, but the actual hitting the floor bit has more to do with lifelong vestibular problems that the others don't share. If I even used a child's swing I'd go so dizzy I'd black out, and I've never dared try a fairground ride other than the switchback.

 

I don't think my POTS/OI is even recorded in my GP notes and I have suffered severely with it. The reason for it not being recorded is that I didn't know what it was. It was just another awful symptom of my ME.

This is why we need a speciality for ME and doctors who understand this part of our ME. We need to all be checked properly for this.

 

Standing is the worst for me as well. Coming to a stop after walking was difficult when I had severe ME. It felt like my body was still in motion after I had stopped. So internally it felt like I hadn't stopped walking when I had.

I just remembered that I used to shuffle into a full stop to help with stopping. I think I still do this to some degree but subconsciously now after so many years having to function this way.

 

I experience chest and forehead pressure when I'm sitting up for longer than an hour., it feels distressful. Lying down relieves this.

 

@Mij Yes, I constantly rub my hand over my forehead when it gets to this point. It is the body in distress.

When Dr Klimas came out to NZ years ago I went along to listen. I couldn't sit any longer than a half hour. I was rubbing my forehead about 20 minutes in and could no longer concentrate. I could only think about getting home as quickly as I could to lie down. I left, disappointed I couldn't stay.

 

I think some people have so much symptom noise that it's difficult to sort out what's what. For several years I felt a noticeably increased HB with upright positions, but because of feeling faint, very nauseated, weak, horrendous brain fog etc., I didn't articulate I had a noticeably increased HB with upright positions. I started to get sick in 1985 - the ME Dark Ages - well, they've all been rather dark haven't they?!

Physicians never gave my ME much credence, a universal situation
for pwME.I had never heard of the
term OI explained or given any recognition when I listed symptoms of OI. I just kept hearing the mantra all your tests are normal. I didn't have access to the Internet then - not many did I think. Books were my sources, but with being so ill one can miss things. Reading the CCC Overview, which came out in 2005 explained some things re my symptoms.

My OI is a problem with sitting upright for too long, and standing still for too long. Walking can also be a problem. I can't concentrate after a while, become uncoordinated, feel faint/lightheaded, etc. I've had three different tests with physicians that all indicate OI.

 

I think it's important to say again: when I recounted symptoms of OI, there was no recognition or acknowledgment of these as legitimate. They were not given a biomedical label, nor were they given any credence via testing until many years later.

This may be one reason why pwME don't know they have OI - no label, no acknowledgement, no testing, just ignored.

 

If I let a foot hang down the side of my bed so that it's the lowest part of my body, it will soon begin to hurt. It feels like internal pressure on the blood vessels.

 

I hate to disappoint everyone but I have to repeat that 'OI' is not a 'biomedical label'. It is just the latin or greek version of 'not being able to tolerate standing up'. It is not a condition or an explanation. It is therefore neither biomedical nor psychological or anything. It is just a name for a symptom.

Tests do not tell us whether you have OI. They simply suggest vaguely what mechanisms might be causing the OI. The two mechanism types that Rowe refers to are POTS and Neurally Mediated Hypotension.

It is still not clear to me how anyone can tell whether the tachycardia in POTS is a response to a blood distribution change that causes symptoms or a response to the symptoms, which may be caused by something else. POTS is also a very confusing term because it is often used as if it was itself a cause, that might cause other things like brain fog.

Neurally mediated hypotension seems a pretty vague category, except in that the blood pressure must actually go down.

If, as seems from the thread, a lot of people get problems with sitting up, not just standing, I am sceptical that the symptoms actually have anything to do with blood distribution at all because it is pretty unlikely that there is going to be enough of a problem to cause symptoms in a sitting position.

What worries me is that most of my colleagues are not that good at physiology and tend to assume that the most obvious answer is the right one. As an example, virtually all doctors think that swelling of the feet in heart failure is due to raised pressure in foot capillaries and in nephrotic syndrome it is from low albumin levels. However, back in the 1960s Eugene Renkin showed this could not be the case and in fact simple observations on patients show it is not. But because the usual story is easier to understand, or has got in the books it continues to be taught.

I would like to see some real scientific investigation of ME/CFS blood distribution. Maybe David System is the person to do this but he has not published anything as far as I can see. We need a real science of OI rather than a cosy story that sounds 'biomedical' but is actually too vague to be any real use.

 

What I have not heard about in relation to the blood distribution issue are studies of central venous pressure CVP with posture. Does anyone know if these have been done? CVP is much more directly relevant than blood volume and would give more causal information than BP or heart rate because what matters haemodynamically with posture is the way gravity alters CVP. Everything else is secondary to that.