Looking for some information on POTS

Hey Peas, I know there was a POTS thread about 4 months ago and I was going to reply and bump that old thread but I started typing and my reply seemed pretty lengthly so I decided to just start a new post. Anyways I have some questions for those of you who have POTS or who have DDs with POTS and my DD has been unofficially diagnosed.

What symptoms lead you or your DDs to seek a diagnosis?



Is POTS hereditary?


Does anyone know of a POTS specialist in St. Lous or the closest one?


I myself have had health issues for the past 15 years or so. Dizziness or lightheadedness was my biggest issue, but I've never passed out, just felt like I was going to. I was diagnosed hypothyroid and with high blood pressure but after treating both of those I still didn't feel well. Found a dr that tested for a bunch of other things and tried tweaking my thyroid meds. I would have good days and bad days, but often just felt 'off' or unwell and couldn't really explain why. Since then, I've been told I have chronic Epstein Barr and apparently my dizziness and lightheadedness stems from Vestibular Migraines.



My DD unfortunately has followed in my unwell footsteps. She was diagnosed late middle school with ADHD. Started ADHD meds that helped tremendously but she went off thru the summer per her dr. Started meds back up when school started and she had a VERY depressive episode that the dr said was caused by ADHD meds, so she was switched to a different kind, and that depression lifted. But she's had bouts of depression and anxiety since then so has also been on antidepressants since then. Started passing out occasionally in high school. She also got very thin at the time as the ADHD meds made her not want to eat.  A doctor we saw at the time said he suspected she had POTS, but he was not real familiar with POTS. He did strt her on a med to see if it helped. Her thyroid numbers were also off but that dr did not want to treat the thyroid at that time. The passing out stopped but the feeling unwell did not. She stopped taking the meds for the POTS and actually struggled to remember to take any of her meds around that time. Diagnosed hypothyrod on her 19th birthday. I was not surprised since thyroid issues run through our family and she was already exhibiting signs of Raynauds so I knew the autoimmune stuff was already an issue (her grandmother on her father's side has this so we knew what was happening there).

Through college she struggled mostly with the ADHD. Then Covid hit and I thought she was doing okay. She was getting heavier, but my other DD and I are both overweight so I didn't think much of it. She turned 21 during Covid so I did not mind if she had a drink in her room while playing video games online with her friends.



Not sure how but she graduated, Covid restrictions lifted and she got a job. Right after graduation she was struggling with her depression and when I questioned her about taking her meds regularly she finally broke down sobbing and telling me she quit taking ALL her meds. I told her that was not an option and told her about Myxedema coma and that she NEEDS to always take her thyroid meds especially. (Suddenly made sense why she looked SO puffy!) She started her meds back up and things were normal for a bit. Then we found out she was drinking a LOT more than we ever imagined and that she was an alcoholic. I went in her room with her and we cleaned out all the empty vodka bottles hidden in her room, wow...I felt like such a bad mother because I had NO idea. That was almost 3 years ago. She stopped drinking immediately, got a better job and really seemed to be doing well for a couple years. Last summer she had another depressive episode, but a new boyfriend entered the picture and she seemed to snap out of it.



Then a couple months ago she hit a wall. Biggest depressive episode, her job was really stressing her out, she said she never feels good and just didn't want to be alive anymore.  We've discussed taking her to the local psych hospital but she always begs us not to take her there as her and her sister know people who have gone there and its not a good place to be.  She always says, don't worry, I will not k!ll myself.  It's been a rough couple of months!  Her psychiatrist has been changing her meds, but DD does not have confidence in him anymore as he had her take a $300 test to determine which drugs would work best, then tried to put her on one of the worst ones for her.  She quit going to the therapist she had a couple years, as it turned out that therapist actually practiced witchcraft and Tarot cards are fun for a girls night out but I don't think they have any place in a clinical therapist setting.  She tried to see a new therapist recently that was not taking our insurance and DD was going to pay out of pocket.  She told the therapist she was looking for a new psychiatrist as this one was not treating her ADHD effectively.  This therapist told her she can't help her mentally until she gets her ADHD straightened out and did not want to set up another appointment with her.  And now after those 2 experiences she is gun shy to find a new therapist.

I took her to our doctor who ran a bazillion tests.  She also had been previously diagnosed with chronic Epstein Barr and apparently hers was reactived and so she was having Mono-like symptoms again.  She put her on short term disability as she said the constant stress at work would not allow her to fight this infection, and put her on an anti-viral.  She also said she suspected POTS and recommended some things to help.  She's been wearing compression socks or tights, increasing her water intake, increasing her Vit C, electrolytes, trying to get enough sleep. 

It's been a month.  She had to go back to work yesterday as her boss is going to be out for 2 weeks starting next Monday and they moved her to a new property while she was off so there are things she needed to catch up on.  She is still not feeling well.  She's worn down and afraid that this is how the rest of her life is going to be... and she is only 25.

Sorry this got so long!