A thread to share your experiences of orthostatic intolerance - problems being upright.

If you ended up in a situation where you could neither sit, lean or move eg a queue in the middle of a shop or street being the classic .. and time ticks on for longer than you anticipated when you judged you could join that queue vs how well you felt (5mins for some, 20mins gif others)

But I’ve also found the checkout at supermarket another classic (must be culmination of Aldo having struggled round supermarket part first too)

then have you ever felt you are going to faint or actually fainted /had to lie down as you are?

I also got the desperate needing to just get head /cheek supported at end of work day, and desperate to lie flat on sofas and so on .

And sitting has never been ‘rest’ eg when you’ve stretched yourself for work or appointments and someone used to say rest before journey well that didn’t work if it was just a chair you could sit upright in esp if there was noise and other people meaning you could even sit sideways or curl to try and get head somehow ‘down’. I’d have to explain I was better using adrenaline to scrape home to get to my bed than carry on ‘sitting in discomfort’ as by that point tgat was draining battery too even if rate was slower (and I needed to have enough to make that journey and it felt that ‘poor rest’ could mean I didn’t make it etc)

I assumed these two things are related in me (I’m more ill now so it’s more obvious and overlapping)

it is interesting food fir thought they might be yet might not be the actual ‘same thing/phenomenon’ but two - so I’m going t have a think differently as I think back and be conscious of that being an assumption’ when doing so and to try and think past it

 

I can describe my OI to be a strong urge to lie down after being upright for a while. There isn't really much change in HR or HRV (as seen in Garmin watch) when I get the urge to lie down. If I try to fight the urge, I get restless, I can't exert cognitively, I get back ache, I bend down, muscles tense up etc.

Also, the amount of time I can stay upright is proportional to the amount of time I lie down before. For e.g. if I lie down for an hour, I can stay upright with compression stockings and legs elevated for 2 hours; if I lie down for half an hour, I can stay upright for an hour and so on.

While POTS experts recommend doing cognitive tasks while lying down, I find no difference in cognition when I lie down. In fact, I prefer being upright while exerting cognitively.

What has helped/ helps me to stay upright for a while are Pyridostigmine, non-drowsy anti histamines and ORS.

 

My OI manifests itself similarly to other people’s, mostly, apart from the blood pressure issue. I have a diagnosis of POTS, carried out through a tilt table test, where I became so ill and physically distressed that they had to stop the test after five minutes. This was a particularly bad episode as I was feeling pretty grotty already that day, and the trio to the hospital even in a wheelchair was really draining. Normally it doesn’t get this far because I don’t let it - when it comes on, I can feel the warn8f signs and have to lie down, or at least sit down and try and get my head and upper body horizontal.

I had severely laboured breathing, I was clammy and cold and sweating so much it was dripping off my face and I could feel it running down my spine, I had tears pouring down my face (don’t know why, it wasn’t an emotional reaction, purely a physical one) a heart rate that had shot up from 53bpm to 140, and a blood pressure spike from my very normal 114/70 when lying down to 200/140. I felt AWFUL.

I desperately wanted to lie down, which is how I normally feel when it’s bad - it’s like a compulsion the need is so strong. And once I *do* lie down, everything slowly subsides and I feel much, much better.

Having looked at the data from my test, I asked my GP if it was worth trying some high blood pressure medication as I’d had no idea that my blood pressure was doing something so dangerous, and he agreed to give it a try. It doesn’t alleviate any of my other OI symptoms but it *does* at least mean it’s not going to kill me - apparently blood pressure that high is hypertensive crisis level and I could have had a stroke at any time. I’d never have known about it if I hadn’t had the test done - there’s a reason high blood pressure is called the silent killer.

I’ve also noticed I get a prickling feeling in my arms and legs when I’m getting an attack coming on. Took me ages to work out what that was, but I think it’s an adrenaline spike. I get a similar feeling when I’ve had a close call when driving, like if I have to brake suddenly for something unexpected (usually a deer or a pheasant here!) and suddenly my lower legs and lower arms get this unpleasant prickling sensation. OI wise, it wears off if I lie down, but if I don’t, it gets worse.

Anyway, I get good and bad days and to be honest, I don’t bother with symptom tracking or anything like that because mostly I can’t be arsed and I just don’t want to be focusing on how crap I feel. At the moment I’m more towards the moderate end of severe, but I’ve been ill for seventeen years now and have been much more unwell than I currently am at times. My OI is definitely worse when my ME is, although I wouldn’t say it’s the most disabling aspect of my illness. That’s the sheer lack of energy in my muscles, but the OI is extremely unpleasant and can make me feel very very ill if I don’t lie down. I’ve never actually fainted, but if I’m somewhere I can’t lie down, which luckily isn’t often, I get that horrible darkening around the edges of my vision which makes me feel like I’m going to pass out.

My youngest daughter, who we’re pretty sure also has severe ME, has bad OI as well. She also has a diagnosis of EDS, although thankfully not rhe vascular type. I’m pretty sure I have it too - never been tested myself but she has and she has the genetic mutation for it. I don’t know if that’s relevant to the OI we both get. She actually faints on her bad days if she doesn’t get to lie down RIGHT NOW, and we’ve recorded a heart rate of over 200 on a couple of occasions, thankfully at home where she’s been able to lie down straight away and it all subsides.

It’s a very weird thing to live with, OI. I don’t know the mechanism but it’s a very unpleasant part of the whole ME experience. The compulsion to be horizontal is so strong it can be almost overwhelming, and then when you do, it makes you feel so much better so quickly. I hope my ramblings have been helpful. It’s been really interesting reading other people’s experiences.

Thank you, Trish, for starting this thread.

ETA a couple of words.

 

When I could still walk round supermarkets, I used to keep a few coins in the pocket of every coat and jacket so I could drop them if I needed to. Scrabbling about on the floor re-started my OI clock, often giving me long enough for the person in front to finish paying for their stuff.

The second-line ploy, reserved for when the cashier got held up by an item without a barcode, was to look at my watch (well, my wrist—I never wore watches) and hurry off out of the queue.

The things you do to avoid looking like an eejit.

 

Me too - I often consult PR when trying to remember the older days, although I was never severe. Luckily I copied out my old diaries there. I am often surprised at what I read!!

 

I hadn't previously thought of myself as suffering OI, but maybe I do. I can't usually think properly when standing for a while, which is why it's so much easier to shop online.

Also, I do suffer in queues similarly to someone else/most people with ME, so that I have to keep moving my legs.

I previously had high blood pressure, but it normalised after some dental work which included removal of a rotten tooth, and my polyuria disappeared too.

I don't check my bp when standing - I did it some time ago and I think it did increase when standing.

 

I find it very odd that I can get straight out of bed at any time of day without feeling lightheaded or dizzy and yet be so disabled by OI.

 

Just a note before I begin: my account is that of someone with ME/CFS with a pre-morbid tendency to OI. For as long as I can remember, ie long before ME/CFS, I had some degree of orthostatic intolerance. It manifested as inability to stand on trains in the morning, feeling rotten in baths and other hot watery things people seem to love, feeling crap when playing sports that involved lots of standing around and picking things up from the ground, things like that. It did not interfere with life. I did not faint. I knew I needed to sit down and I did. I was very fit, loads of lower body exercise, drank water, looked after myself. It was just how my body worked. I did not know what it was until ME/CFS amplified it to a disabling degree.

Symptoms in order of proximity to actual fainting:
· Cognition gets slower – I’ll get mixed up, do things in the wrong order, not be able to talk

· Dull headache, low in head, “headache” is the wrong word but the closest to how it feels

· Nausea

· Feeling very hot

· Feel shaky

· Feel weak

· Grey fuzz in front of eyes

From worst to least bad:
· Standing still (not an option for longer than a few seconds)

· Getting up and down a few times in succession (ugh, makes me feel rotten)

· Walking around

· Sitting still (not an option – meditation teachers often want you to sit upright so that you “stay alert”, but if I sit and relax I get lightheaded quickly. If I have to sit still then I need an emotion like anger to keep my blood pressure up!)

· Bending over to pick something up (need to instead do a plie like a ballerina and reach out hand blindly for whatever I’ve dropped)

· Doing little upright jobs eg putting things away (can do brief bouts before a big rest)

· Sitting while moving arms


How I deal with OI:

· Have to be on or near a bed at all times.

· Have to keep well hydrated. In hot weather I need a constant stream of iced water. In regular weather, room temp water. One expert told me I was drinking too much so I reduced it down to almost what they suggested and was a mess, big increase in near-faints. Brought it up to 50% more than they suggested which was a bit better but still much more symptomatic for the 6 months I stuck with it for. Went back to just drinking what I need.

· Have to keep my temperature at a comfortable middle level. So when the central heating is on, we make sure my rooms don’t get too hot (this takes keeping an eye on forecast, thermometers in each room and a lot of work on thermostats). When it’s hot, fans and curtains closed and late at night, let cool air in from outside.

· Need 4 rests lying flat every day – 1 hour, 2-3 hours, 30 mins, 20 mins.

· Between rests, I am lying in bed, propped on two pillows, almost all the time. The only time I’m not lying is if I’m going to the bathroom or moving to the other room or doing little jobs.

· Have to shower last thing at night, because it’s the hardest task in terms of OI. Earlier showers are much more likely to cause symptoms and scupper the whole day.

· No talking after shower. Even though I often think I’m doing OK and can do the things I need to do, or say one sentence, any attempt at an actual conversation reveals that my cognition is pants.

· Feel hideous, increasingly so, until I either near-faint or can lie down to rest. Lying down does “fix” a lot of the most acute symptoms, or greatly reduce their severity, but I generally need to stay down for quite a while (an hour) before attempting the next upright thing.

· Depending on how far it goes and lots of other factors, I may feel worse for the rest of that day or into the next day.

· Repeatedly pushing through upright activities in one day can make my OI worse for a few days, disproportionately to the PEM that will also be triggered.

· Repeatedly pushing through OI symptoms on a regular basis as instructed by multiple health professionals made my OI and ME/CFS deteriorate significantly, and so far, irreversibly. (I’m allowing myself a causative statement there.)

· Yes.

· It means I’m housebound and bed-based, and it meant that long before my ability to walk reduced enough to put me in that place. The only thing I can leave for – medical appointments – make me feel rancid, despite lying down in the car, lying while waiting, wheelchair from car to office, lying on exam table for consult.

· It means I have to spend 5-15 times as much on a mobility aid as I would otherwise. This is because I need a powerchair that can tilt/recline and raise legs sufficiently to stop a faint between beds.

Worse
· Heat

· High humidity

· Dehydration

· Mornings

· Doing more (and hence being more fatigued)

· Being upright more

· GET

· Following professionals’ advice to exercise more and to stay upright for longer at a time, no matter how slowly or gradually or tailored

· And then all the usual things like infection

· Undiagnosed iron-deficiency anaemia made it a lot worse (same symptoms, same patterns, but got to the near-faint stage more often)

Better

· All the strategies in other answers above

I’m not going to get into the details of this, I’ll just make general comments. My OI affects blood pressure rather than heart rate, but it only affects blood pressure when it gets to the near-faint stage. I stay conscious at very low blood pressures, long after many others would lose consciousness. I feel dreadful long before this.

I have real misgivings about current testing and the interpretation of that testing. It's also extremely problematic that OI professionals believe fervently that exercise improves OI. That includes most that are considered ME/CFS expert clinicians, with notable exceptions like Visser and van Campen.

 

Oh! I left out the actual near-faint and faint symptoms, which comprise a very quick escalation of all of the previous symptoms especially

• really bad nausea, sweating, shaking, tingling
• lose feeling in and control over limbs/body generally
• rapidly lose more vision
• a kind of semi-blind or blind stagger/slither away from things I could injure myself on towards a flat, soft surface

 

More on how I deal with OI:

Need to sit to shower, sit at sink to wash hands, sit cross-legged on bed to do anything that can't be done lying down. Lie down to do anything cognitive.

 

If you were to stand for a minute or two in the shower would you have to spread your feet wide apart for balance and for the feeling/need to try to hold yourself up? I'm just curious if others experience that in the shower as well. I don't know if this is to do with my OI or some other symptom.

 

Hm, widening my stance wouldn't stop me fainting. And holding myself up would be the opposite of what I need if dizzy - I need to get to the floor or bed asap. So I think OI and balance are different things for me, but obviously when I'm actually fainting due to OI, balance goes temporarily.

I got two grabrails put in the shower for the purpose of grabbing onto when I start getting dizzy so that I can get to the floor more safely.

Occasionally I have a spinny type of dizziness that really affects balance, but that tends to be when something else is in the mix eg an infection. I wouldn't be safe in the shower with that type of dizziness, as it really involves lurching and stumbling.

My balance goes off if I'm exhausted, PEMd or in a pain flare, and in those cases, yes, I'd find myself standing with feet a bit wider apart than usual. (If I'm having a really short shower, just a few minutes, then it's easier for me to stand than to keep having to stand up from sitting, but I do have to keep moving. I wouldn't be able to just stand still and enjoy the water.) I do find myself using one of the grabrails in the shower for balance much more than I expected.

Another thing I think is relevant to this thread is when OI started. I often read papers where the assumption is that OI only joins in later, and the assumption is that that happens because of deconditioning over time. For me, extreme OI was the first symptom of the triggering infection (nothing too unusual there), and OI remained the most prominent issue right from onset. It was bad when my ME/CFS was mild and is worse now that it's severe. As others have said, my OI just tracks my ME/CFS. It can be temporarily worse when additional things like infections or anaemia are in the mix, as you'd expect. It has demonstrated time and time again that it does not improve with exercise, instead, it gets worse.

 

I think it's what the tilt table takes away - it takes away your ability to compensate for what's happening by tensing your leg muscles against the floor/ground and moving around.

 

I get this too - I'm often in a quandary as to whether to sit down temporarily to rest or to keep standing, because of the effort needed to stand up again. I often have to pull myself up using furniture when I have had to crouch on the ground, e.g. to pick something up.

I really should remember to use my long-handled 'grabbers' more!

 

Yeah, I have to do a quick calculation of which is worse that day - OI or legs? And then sit if it's OI and stay standing if it's legs. For me, getting up and down and up and down brings on OI symptoms horribly.

 

Trouble is, you can guarantee it'll be on the other side of the house! Someone bought me one, but I rarely use it because bending to pick something up uses less energy than fetching the flaming thing.

 

Same here Evergreen. The OI was my first symptom as well and also tracks alongside my ME in severity with the odd worsening bouts.

 

I've recently been focussing more on the orthostatic intolerance side of my symptoms; i regret not looking into this more before because there's some simple things that seem to help.

I have bought compression garments, which I'd used before and kind of given up on but these new ones seem to make a difference.

I also had a huge revelation two nights ago when I was on my feet and felt myself fading fast; I drank a bunch of iced water and suddenly felt much better. IN the past if I have had that feeling it suggests PEM is coming the next day, but I did not get PEM. I found some published support for the merits of iced water on some measures that relate to OI and will certainly be trying this trick again!

 

This could also be a good thread to share a post I found in a facebook group for the in-ear wearable device that measures bloodflow to the head.

I'm sharing this post because I think it moves the goalposts in a really useful way; if everything else is just a proxy for getting blood to the head, then actually* measuring bloodflow to the head live and in real time is going to be so useful for understanding POTS/OI triggers. As this user finds, their meds treat the proxy for blood flow but not the actual bloodflow!

*the device does not actually measure blood flow to the brain, just the head - they measure a branch of the carotid artery that goes to the ear. It seems to correlate nicely with cerebral blood flow from early data though.

 

My daughter has one of the recently described kinds: hypertensive-type OCHOS. It's a bit different to classical OI, in which not enough blood gets to the brain. In hypertensive-type OCHOS, the blood gets to the head but can't get into the brain due to abnormal vasoconstriction. But there also seems to be a classical element, in that she feels worse after meals (blood rushing to the digestive system) and when standing still.

She started off having isolated instances of OI, such as feeling unwell at a morning tai chi class, then noticed heat intolerance in the summer, then a bit of fatigue crept in. At age 30 she began having daily symptoms, at first only in the morning after breakfast, but gradually extending to most of the day. Those symptoms were feeling faint and unwell when standing still or walking slowly. She would also turn pale, become irritable, feel low emotionally, and make decisions she regretted (nothing too major, thank goodness). Showering also became a problem.

She's hoping to get one of the Lumia gadgets @Murph mentioned above to see how well medications are working. It will be a while until they make it to Australia, though. The company is working on getting a medical device version that will be able to be used for diagnosis, but that will take a while too.

Please note: My daughter did not previously meet the diagnostic criteria for CFS because of not having PEM, but recently she feels she is heading in that direction. She crashes after activity and has to avoid exerting herself physically and cognitively. Originally when she got her OCHOS diagnosis and started medication, it seemed that would fully explain her symptoms and treating the OCHOS would give a sustained improvement. Unfortunately it hasn't turned out that way.