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Posted

I had this when I was a child. I began being Potsy at around age 8. I am just wondering if this could have been my trigger. It is a blood vessel condition. I have been reading that many of people have developed POTS after an illness or injury. I plan on getting my childhood records and see if there was anything in my charts stating that I had these symptoms before I had that condition. I am certain i was aorund 8 when my POTS began, but it could have been earlier. I got HSP the summer I turned 6.

Here is a link to a description of HSP

http://www.printo.it/pediatric-rheumatolog...mation/UK/7.htm

Posted

I have never heard of it, but I hope you find some answers looking at your childhood charts. I've given up on figuring out my "trigger." It wastes energy I don't have and I figure I might as well just take care of myself in the state I'm in now.

Meg

  • 15 years later...
Posted

To anyone who may still be following this thread or comes across it like I did…

My daughter, now 18 and recently confirmed/diagnosed with POTS via tilt table, had HSP (an autoimmune blood vessel condition) when she was six, like the OP above. Her general POTS symptoms (nausea, headaches, trouble sleeping) started around age 12 or 13, but she was diagnosed with PCOS at the time (around 2018). It may also be important to note that she got her HPV vaccine around this time, which may have triggered the POTS according to an article I read about vaccines and autoimmune responses.

Her POTS symptoms worsened after getting COVID in 2021;  she was diagnosed with gastroparesis soon after. However, it wasn’t until this year that she was finally diagnosed with POTS. She’ll see a neurologist later this month.

I hope this information helps someone connect their dots (possible autoimmune to POTS) and maybe, eventually, a cause/treatment for POTS can be found.

  • 6 months later...
Posted

Hi,

I just came across this thread and burst into tears. I was diagnosed with hsp at 11 and around then my what I now understand as POTS symptoms started. I am now 22 and fighting for a pots diagnosis but am not taken seriously by my gp. It has made me so emotional to know that there are others who had HSP as a child who have now been diagnosed with POTS and has made me feel sane again.

Thank you!!

 

  • 7 months later...
Posted

Hi my name is Megan. Im 27 years old. I was diagnosed with HSP in 2014. I have alot of the POTS symptoms. I had never heard of it until a friend suggested i have it. Did alot of research and i saw that POTS is related to autoimmune diseases. I decided to google it. At first alot of websites said HSP and POTS have no connection but then i came across this forum. I feel better that i am not alone in this. I truly believe that my hsp and pots are connected. Ive had pots for many years but it got alot worse after i had my son in 2021 and gained weight. I have now lost weight and still struggling with it daily. I’ve always had issues with dizziness and nearly fainting when standing up but now i even feel like fainting even when im sitting down. My hands and feet are constantly swollen. I am also anemic and have hypoglycemia. The hsp has caused alot of nerve damage and neuropathy in the areas where the purpura hsp rash was very severe on my body. And the accompanying vasculitis made my blood flow very horrible. One thing i found to help alot is taking iron pills and drinking this stuff called Asea Redox Cell Signaling Supplement which is Sodium Chloride and water. If anyone would like to reach out to me about this topic my facebook is Meg Hacksaw. Or my instagram is @pissgirly69  . My profile pic is of me and my son in the car. 

Posted

@Meg Hacksaw Welcome to the forum! I am so sorry you are going through all of this! I had autoimmune vasculitis a few years back, so I am familiar with that. I also developed POTS after having my daughter many ago. I was thoroughly examined and tested by an autonomic specialist back then and diagnosed with HPOTS. This specialist has also been involved in studying autoimmune causes of POTS. In your case you also mention that due to the vasculitis you developed neuropathy - this is a known cause of autonomic dysfunction. 

16 hours ago, Meg Hacksaw said:

I’ve always had issues with dizziness and nearly fainting when standing up but now i even feel like fainting even when im sitting down.

This is what happened to me often and I am now disabled due to it. In my case I was diagnosed with NCS ( neuro-cardiogenic syncope ), which is also a dysautonomia condition, in addition to HPOTS. You can find more information on this under the information resources tab at the top of our main site. 

In general with both POTS and NCS it is recommended to increase salt and water intake, do moderate exercise as tolerated and wear compression garments if tolerated. Of course there are medications that can help once properly diagnosed. 

Here is an article regarding autoimmunity and POTS

https://www.ccjm.org/content/90/7/439

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