POTS and Orthostatic Hypotension

I just got diagnosed with POTS. It is completely disabling. I'm living in a fog most of the time and so incredibly dizzy and lightheaded. I have fainted this past week just from sitting upright.

I know very little about POTS. I even forget what it stands for without googling it. I already knew about orthostatic hypotension as this is what I was diagnosed with about ten or more years ago. But I've been told in the ER that POTS is different.

I read online that a good percentage of POTS patients are comorbid with autism and hypermobile Ehlers Danlos. I have both of those.

Could anyone who has POTS tell me more about it, their symptoms, the treatment etc? I can't get in to see a cardiologist until June. I would like some info in the mean time.

When I returned to this forum, overheard someone describing symptoms of pots. I think I have fatigue when standing up quickly, but just eventually decided mild symptoms with age and lesser issue amongst all hyped symptoms lately so can't be more helpful than saying it's affecting me too.

hello! I also have the trifecta (pots,asd,eds) mine started when I was 14 and I still am disabled by it (most days I can only stand upright and still for about 5 minutes before I need to sit down. 10 minutes on a good day) but a low dose beta blocker and electrolytes help a lot. I can't stand the taste or texture of all electrolyte drinks I have tried but I just try to chug them and remind myself they are medicine. POTS is not caused by just one thing and symptoms are not universal but for me along with fast heartbeat I also get nausea, leg tingling and sometimes shaking, shortness of breath, chest pain, hot flashes, blood pooling in my hands and feet, and sometimes "seeing stars" and collapsing (though I don't tend to properly black out as I normally get to the floor before that occurs due to my legs giving out)

@Yeshuasdaughter I'm sorry to hear that you have this problem. At least now that you know what it is, you can be treated for it though.

I have pots but I'm not as negatively affected as you are. For me I just feel dizzy or even see black when I stand up too quickly and all I need to do is not stand up too quickly and instead of getting up from bed and walking all over the flat (then I get heart rushing like a panic attack, sit for a few minutes at first.

It was mentioned to me that in more severe cases medications are prescribed to regulate blood tension?

PastelPetals said:

electrolytes help a lot.

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Staying hydrated helps too, yup.

I don’t have a diagnosis, but I have all those symptoms, which have gotten worse as I age.

For what it's worth - you can eat some saltine crackers and drink some fresh orange juice to get the same key electrolytes that are in commercial electrolyte drinks. Staying hydrated by drinking plain water is essential.

Yeshuasdaughter said:

I just got diagnosed with POTS. It is completely disabling. I'm living in a fog most of the time and so incredibly dizzy and lightheaded. I have fainted this past week just from sitting upright.

I know very little about POTS. I even forget what it stands for without googling it. I already knew about orthostatic hypotension as this is what I was diagnosed with about ten or more years ago. But I've been told in the ER that POTS is different.

I read online that a good percentage of POTS patients are comorbid with autism and hypermobile Ehlers Danlos. I have both of those.

Could anyone who has POTS tell me more about it, their symptoms, the treatment etc? I can't get in to see a cardiologist until June. I would like some info in the mean time.

Click to expand...

I am so sorry this happened to you. I have known people with POTS and for them it was totally disabling. Every day was hard to manage. This website is about autism but when I used to go to disability websites there were groups of people with POTS and Ehlers Danlos Syndrome. I had good friendships with lots of people who had it but it seemed so hard. I hope you can find other people to talk to and get good information.

I have Ehlers Danlos and dr also said borderline POTS. When I stand and walk, it is like a fatigued tingle that runs through my body--it almost feels like walking through water, with dizziness and a lot of effort. I've never fainted but it sure feels like I will. It affects my driving because I get these waves of dizziness with the movement. Unfortunately, I haven't found anything that relieves it, but I do force myself to be active even when it's uncomfortable and try not to let it stop me. For the longest time, before I learned I had POTS/EDS, I knew something was really off --but what I was imagining was actually quite a bit worse than POTS, so in a way it was a relief when a physician finally figured it out. The challenge is pushing myself through it even when I don't want to, and to not letting myself stop moving. I think with EDS so many of us in our younger years are actually athletic...as for myself, I have always loved movement, so it's been tough to lose some of that enjoyment--but I find myself adapting and moving in new ways. I haven't been able to find out yet why EDS, POTS and autism so often go together, especially for women. It seems like the researchers note the association, but not the reason. Sorry you're going through this. It helped me to realize that I can have EDS and POTS but still be healthy--even if I don't feel healthy. I can't believe I'm saying this, I sound so old, but for younger autistics please know this is something we often encounter as we get older, but there are things you can do to reduce the chances of injuries from EDS (ie, it's probably not a good idea to show your friends how your thumb slips out of joint at will--after years of that, the poor thumb starts to come unhinged.) But gosh, it can make for some good party tricks.