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

Time of day for me is quite significant. I'm not sure whether it's all related to OI.

If feeling out of breath easily, shakiness when I walk a block and cognitive fatigue then needing to lie down most of the morning/early afternoon is OI then that's what I have.

I am able to push through and not needing to lie down so much after 6pm. But if I'm upright for very long and talking I do get pressure around my forehead and chest and need to lie down for a bit.

Early in the illness I didn't have any OI symptoms for 11 years, so I am able to distinguish the difference between fatigue, OI, and PEM.

 

My OI doesn't involve feeling lightheaded, dizzy or faint, despite being so disabling that I have to lie down or have my raised all day bar an hour or so.

 

Would you describe your OI as uncomfortable/stressful and the need to lie down immediately? That's how I would describe it.

 

No, I can stand up or sit normally and feel OK and then I gradually start to feel worse until the need to lie flat becomes pressing.

I don't find it stressful (unless I'm in a situation where it's embarrassing to lie down in public, and that's not the OI causing the stress, it's the embarrassment).

I wouldn't describe it as 'uncomfortable' but I don't really have a word that describes it accurately. 'Fatigue' might be the nearest, but that's not it. I don't feel heavy, or pulled down by gravity or anything.

 

I have problems standing from sitting down or crouching, where the blood drains from my head and vision and cognition grey out. I can lose consciousness unless I lean over forwards. Takes about 30 secs for blood pressure to come back up.

Severity of this varies, depends if I have been having viral symptoms recently and these tend to be cyclical in the order of six days but the cycle is unpredictably variable.

Basically I have to hold onto something and lean forwards whenever I stand up. Getting out of bed or a chair, first I sit up straight and wait until I feel OK then stand.

If I stand too long that can tip me into more severe fatigue sensations which are a warning of potential PEM. I feel blood draining from my head and its a kind of deathly feeling within, best to sit down or lie down for a bit every so often if I am trying to cook or something like that.

I have a reclining computer chair with soft cushions and towelling and a hammock in front of my TV so I can recline and watch TV or interact with my PC in a sustainable way.

 

Sometimes in research papers OI seems listed almost casually as one symptom among others, but my experience of it is that it governs my whole life… The slightest daily activity I undertake must be interrupted on average every half hour to lie flat a few minutes, and those so-called "activities" were done sitting with legs horizontal (such as writing this).

The best way I have to deal with it is to surrender... or not caring about crashing, but that's hard. OI is my no 1 PEM trigger, I no longer do any physical activities like going out for a walk, so now it's whenever I'm simply upright too long that I later crash, for a couple of days.

The course varies in a day but is always the same: It's bad in the morning, a bit less around noon, bad again late afternoon, and "easiest" in the evening (but still there).

If I wait too long before lying flat, my first signals are an unpleasant sensation that my heart is labouring to beat while my head feels like it's both heating up and shutting down, not easy to describe but what I hear is "Stop everything and lie down"! Or you'll hurt for days.

 

If I stand on the spot without doing any significant muscle activity, the symptoms of OI start within 30 seconds. I feel an overwhelming need to sit down again within a minute.

If I can't, the nausea, unsteadiness, shaky hands, and white noise in the ears keep getting worse, then my legs start going wobbly.

The longer I stand, the less able I am to take a step or two to mitigate the "really ill" feeling. I've fallen a couple of times because my legs became so weak* that both feet were rooted to the spot.

I can mostly manage to relieve OI just by sitting down, though horizontal's better in PEM. Lying down's uncomfortable for non-ME/CFS reasons, so it's always a question of which is least worst.

My walking ability's very limited (<20 metres), but not because of OI. If I'm working my legs or my core muscles I don't get OI symptoms at all.

I'm not sure whether OI is worse in PEM or not. I suspect there isn't a dramatic difference, as it always feels awful.


* Unlikely to be ME/CFS, as it neither varies with PEM nor affects any muscle group except upper legs.

 

I agree with @Chris, OI seems to be my #1 disabling symptom.

 

I have POTS - tachycardia and rising BP within 10 minutes etc.

But I think my most unpleasant OI symptom is loss of balance. This also translates into gait issues. It feels like I'm about to tilt over so much I may fall, but I seldom do. I try to lean against things when ever I can when I walk.

I have fairly severe bilateral vestibular damage of unknown origin. It's possible this contributes to the balance problem. I cannot say for sure.

I can confidently say the longer I am upright, balance worsens. It is at its least bothersome after sleep or other long periods of laying flat.

The poison feeling so much of us talk about also worsens the longer I am upright, but I am unclear whether that is tied into OI.

 

I was diagnosed with orthostatic intolerance, NMH, or neurally mediated hypotension, in the late 90s. I have lots of stories. During that tilt table test I flatlined and had to be revived. NMH has bradycardia, not tachycardia, which means as blood pressure falls the heart beats less, so causing bp to fall further. That is why I flatlined. I suggest running a tilt table test only in a place that has the capacity to revive patients in cardiac arrest. In my case this was my cardiologist at a major hospital. Tachycardia can also induce cardiac arrest I think.

Now many patients have both OI and high blood pressure. They are two different things. My high bp partially protects me from OI, except under specific circumstance. Now I have reversed both my high bp and type 2 diabetes on the keto diet, though still on some residual drugs, and I am getting OI symptoms more often now.

When OI hits I lose control of my body. Typically I do not pass out but I just fall, or sometimes stagger.

This is much worse when sleep deprived, which is very common. During my several years on sleep hygiene, as I was going to class at university, the only thing it did was deny me sleep and I would fall down from OI a great many times. In fact I fell down three times on the same stairs within a couple of minutes, trying to rush to class during my biochemistry degree.

The new type of OI that I think we are just learning about has normal peripheral blood pressure, so does not show up on a standard tilt table test. It requires simultaneous measurement of blood perfusion in the brain. Peripheral blood pressure might be normal, but the brain pressure is low.

I move slowly, stand up slowly, and am experimenting with using the 30s rule from Perikles Simon to build up my calf and leg muscles to increase resistance to peripheral OI.

 

Maybe ought to add that nothing unexpected seems to happen to my heart rate when I'm having OI symptoms. There isn't an observable difference from when I'm upright and not having them.

It seems to be to linked to standing upright without actively using large muscle groups, nothing else. Bending my back and legs to pick up a small item from the ground would relieve it for a short time. Using my arms to do something trivial like rinsing a cup wouldn't.

 

Annoyingly, I test totally normal all the time even though my OI is hugely and constantly disabling.

 

That might be the new kind of OI I was referring to. I have talked with other patients with severe OI who keep testing normal on the tilt table.

 

I have to be very careful how I move my head. I think I accidently gave myself a tilt table test in my first year of very severe. I moved my head too far backwards and was immediately violently sick. I slept for 8 hours, woke at midnight and then slept until morning. What was interesting about that was that I had very severe insomnia, sleeping 2-4 hours at night. I was a mess in those years. So it does make make me wonder how much the OI is contributing to the ME insomnia.

I noticed a few months ago that I am starting to forget details of my very severe years. I am glad that I wrote a lot about my experience on PR forum.

My OI follows my ME in severity as far as I can tell.

I still need to lie down and I still take my meals to my bed because it is more comfortable than sitting at a table with arms up.

I have a stool in the shower for when I need it. The further apart I have to place my feet in the shower for stability is a sign of how severe the OI is at any time.

I have difficulty walking through large buildings with high ceilings. It seems to provoke the need to go to the loo. Also I feel imbalance and my gait changes.

I will post more when I remember things.

 

@AliceLily

I can relate to a lot of what you're describing. For me it's more of a vestibular issue with head back movement and feeling very ill and not so much OI.

 

I had only two brief (few weeks?) experiences of OI in my 25 years of ME. During those, if I did anything that really increased my HR, when I stopped that exertion, then my vision would start to grey out, and felt like I was about to pass out. Sitting or lying down would make that go away quickly. I didn't see any correlation with other factors; just one of those occasional changes in ME.

 

Something I have wondered about: Why are there so many reports of people fainting or similar during a tilt table test but at the same time these people don't seem to report these problems from just standing up. What does the tilt-table introduce that "normal procedures" of getting up don't?

For this discussion I think it is useful to understand the temporal nature of what is being discussed. For example feeling dizzy, lightheaded or fainting is seemingly rather commonly reported in healthy people if they stand up "too quickly" with the simple solution being to get up slower. In the case where people with ME/CFS experience certain symptoms tied to OI, I think it may be valuable to understand the temporal nature of these to better understand what could be going on.

 

I'd say no. After general lack of capacity to do stuff, mentally and physically, inability to walk is the most disabling symptom.

If I could walk I'd rarely have OI, as it vanishes as soon as I engage my leg muscles. I used to be able to mitigate the symptoms triggered by standing at the cooker by moving regularly, which tends to happen anyway when you're doing things like cooking. Queuing was the only time it was a real problem.