How do you experience orthostatic intolerance?

[Andrew]

I've been trying to pay closer attention to my orthostatic intolerance so I can better describe it to doctors. Here's what I've observed.

1. With me, it starts out with extreme light-headedness. So much so that I used to worry that I might pass out.
2. If I remain vertical, I start to feel sick and the longer I stay vertical the sicker I become. It is similar to the body feelings I associate with having a very bad flu. Some of it is achy, but it it is mega-malaise, some of it simply feels yucky.
3. If I continue to be vertical, fatigue is added onto the symptoms above. And the longer I am vertical the worse it gets.
4. If I stay vertical too long I can feel so sick, weak, and unfocused for the rest of the day, or longer, even if I lie down.

When I'm in a waiting room I try to stretch my legs out and lean back so I'm closer to diagonal. This can help. But yesterday I got so sick feeling I swallowed my pride and lied down on the floor, and tried to use my bag as a pillow. One of the staff noticed me there and got a gurney for me to lie on. I got onto the gurney, and in less than two minutes I no longer felt horrible. Not great, but not so sick that I felt like I needed to take immediate action.

Anyway, I've been typing this sitting up and toward the end of the previous paragraph I started making typo after typo. And when trying to correct them I had to try two or three times to get it right. And there is much difficulty to push myself to keep typing this. So I'm done for now.

 

[sb4]

Heart pounding and increased HR are the main ones for me, light headedness is very secondary. I think I am an anomaly in this regard however.

If you are trying to convince the doctors, the easiest way would be to show them the diagnostic criteria for POTS, then ask them to measure your HR/BP sitting then standing for 10 minutes.

 

[Cort]

I obviously have a mild case of OI but it is present nonetheless and I think it makes a big difference in my health.

When I'm tired I experience light headedness upon standing. I think it more shows up for me in the distress that occurs while walking. Walking I think is the worst form of exercise for me. I experience more muscle pain and fatigue - upper body muscle pain interestingly - after walking than anything else. This much relate I think to OI problems which I think are present in some form for everyone.

 

[Seven7]

For me same for you but I get shortness of breath and heart rate elevation.
Your best bet for your doctor is to do poor men tilt table tests and resting heart rate and blood pressure first thing when you wake up. Take this log to your doctor and you should be good to go, if you can add heart rate monotoring specially when you feel orthostatic that will help.
The idea is to prove the behavior of hr and blood pressure throughout.
For example I would get high BP when crashed but had low resting heart rate. This made a difference in the treatments options, at first would look like I had high blood pressure when my natural was actually very low, allowing to prescribe a vassocontriction drug (midrodine )

 

[alex3619]

While I can get lightheaded sometimes, mostly my OI is not an issue. I have severe NMH, but I also have high blood pressure, which counteracts the OI issues. However when it does manifest it involves sudden loss of consciousness. I pass out. This is most often when walking up stairs, though I avoid them these days, but sometimes just getting up from a chair or bed is enough.

Once I have been lying for a few seconds my blood pressure usually stabilises. However during my tilt table test my blood pressure totally collapsed and I flatlined, I had to be revived.

Very little is known that I can find with regard to OI and high blood pressure.

 

[taniaaust1]

I've been trying to pay closer attention to my orthostatic intolerance so I can better describe it to doctors. Here's what I've observed.

1. With me, it starts out with extreme light-headedness. So much so that I used to worry that I might pass out.
2. If I remain vertical, I start to feel sick and the longer I stay vertical the sicker I become. It is similar to the body feelings I associate with having a very bad flu. Some of it is achy, but it it is mega-malaise, some of it simply feels yucky.
3. If I continue to be vertical, fatigue is added onto the symptoms above. And the longer I am vertical the worse it gets.
4. If I stay vertical too long I can feel so sick, weak, and unfocused for the rest of the day, or longer, even if I lie down.

When I'm in a waiting room I try to stretch my legs out and lean back so I'm closer to diagonal. This can help. But yesterday I got so sick feeling I swallowed my pride and lied down on the floor, and tried to use my bag as a pillow. One of the staff noticed me there and got a gurney for me to lie on. I got onto the gurney, and in less than two minutes I no longer felt horrible. Not great, but not so sick that I felt like I needed to take immediate action.

Andrew you explained there very well how I'm affected by it too, I often need to actually lay down no matter where I are at the time due to this. I've ended up having to lay in so many horrible places from hospital floors to hallways to shop back rooms. If I don't lay down quick enough when I'm being affected, I will then be affected by it for the rest of the day till the next day. I think it starts to affect the ME badly if I keep ignoring the OI hence then affected into the next day too.

Added to the light headedness then the sickness and fatigue it causes.. I also go into an unbearable feel like my head is going to explode and my vision starts to blur and it becomes even harder to think then it usually is with the ME.

 

[taniaaust1]

I forgot to add that the OI also sends me into anxiety when I start getting affected by it. This may be due to the fact that my adrenaline can shoot up sky high due to the OI.

 

[Andrew]

One of my problems in working with medical people is my blood pressure tests support what I feel sometimes, and other times they do not. I took my pressure lying, sitting, and standing twice a day. Sometimes my pressure would dive more than 20 points, other times less, and a few times it barely changed. But none of this correlated with my subjective experience of the symptoms. It's all so odd even I have trouble believing it.