A to Z of EDS: O is for Orthostatic Intolerance

Orthostatic intolerance comes under the umbrella of Dysautonomia, as does POTS ( Postural Orthostatic Tachycardia Syndrome) but  I used ‘D’ for dental issues, so will cover problems with the autonomic nervous system generally in this post. 

For a great overview of various autonomic issues associated with EDS, please read this post. It goes into detail on what can go wrong and why. I’m going to focus on my own personal issues in this post, especially in trying to get a diagnosis. 

Orthostatic Intolerance is, in the simplest of terms, feeling faint and dizzy (or even fainting) when you stand up. Now, it’s not really the best idea for anyone to jump straight out of bed. After a recent gastroscopy, the nurse advised me to sit on the edge of the bed for a few minutes before standing up, and said she gives this advice to everyone. She seemed surprised when not only was I aware of the need to follow this advice, but that I said I’d been doing that for many years. But with OI, not only do you need to get up slowly, but if you stay standing for too long, the symptoms come back. 

In most people, when they stand up, their blood pressure falls as the blood rushes to their feet. But after less than a second, it begins to rise again as their heart rate rises momentarily to correct things. But with EDS, factors such as stretchy capillaries and faults with signalling can mean that the blood continues to flow to our feet instead of up to our brains where it’s needed. No wonder we feel faint and dizzy! The blood pooling can be very obvious and lead to red, swollen feet, but in many cases it’s not visible. 

Sometimes, the heart rate can increase a lot, in an attempt to get the blood back up to the brain. This is, in the simplest terms possible, what is known as POTS. Technically, the change in heart rate between sitting and standing has to be greater than 30 beats per second. Usually this can be detected in less than 5 mins, but in some cases (like mine) it can take more than 10 mins for the heartbeat to rise by this amount. This is why, when my rheumatologist conducted a simple 5 min test for POTS, he ruled it out. I didn’t know enough about it at the time to question him. He did, however, diagnose me with OI, as my blood pressure fell quickly. 

To get an official diagnosis of POTS, it is recommended to do a tilt table test. To get one of these, I need to be referred to one by a cardiologist. I am currently on a waiting list to see one. I’ve been on the waiting list since November, with no indication of when I may get an appointment. (I could see one faster if I go private, but we’ve spent so much lately on seeing private consultants, it doesn’t seem worth it.) He will probably also refer me to get a Holter monitor as I’ve been getting symptoms of tachycardia (fast heart rate) when just lying down, and which then go back to ‘normal’ (my normal heart rate of 85-100 is on the fast end of ‘normal’) within one minute, which is suggestive of SupraVenticular Tachycardia, another heart condition related to EDS. Even so, I’m not very confident in being diagnosed correctly. Apparently the TTT equipment in my local hospital, according to a fellow EDSer is ‘neglected and dusty, and nobody seems to know how to use it.’ Hopefully this is no longer the case, but I’m not feeling very confident. 

I find my symptoms get much worse in hot weather or when I’m even slightly dehydrated, so I’ve been increasing my consumption of water and salt. Also, showers can make me very dizzy so I avoid them and try to be as quick as I can if I do have to have one. And as standing in queues can be a nightmare, I try to limit having to do that, through things like online shopping. And the first thing I do when I go anywhere, is look for the nearest seat! 

OI and POTS can cause symptoms similar to Chronic Fatigue Syndrome. Which, if you read yesterday’s post, I was recently misdiagnosed with. It is believed that up to half of those diagnosed with CFS may actually have POTS. And POTS is very common for those with EDS. So, if you have a CFS diagnosis, I would recommend getting checked for both POTS and EDS. 

As luck & serendipity would have it, I just came across this fascinating presentation today. It really is worth taking the time to read it. 
[image is of a green background, with the words ‘O is for Orthostatic Intolerance’ in white.]

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