POTS and Orthostatic Hypotension

[Yeshuasdaughter]

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.

 

[Kayla55]

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.

 

[PastelPetals]

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)

 

[FayetheAspie]

@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.

 

[vergil96]

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?

electrolytes help a lot.

Staying hydrated helps too, yup.

 

[WhitewaterWoman]

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

 

[Mary Terry]

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.

 

[grommet]

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.

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.