Looking back..orthostasis in adolescence

[Hippopotsamus]

Hi everyone, I just wondered looking back how many of you had mild orthostatic symptoms as a child/teenager, then went on to develop more severe autonomic dysfunction/POTS as an adult. I recall many episodes of “visual snow” that looked like a static tv screen filling my vision that would remain until I sat down, often when standing very still or in warm places. Sometimes accompanied by muffled hearing or pounding heart. When I developed POTS in my 30s (stress+virus+pregnancy) the decompensation was severe and my autonomic nervous system went totally bonkers but looking back I now think that I was predisposed to this, and was like a time bomb waiting for a trigger. Anyone else? 

[Pistol]

Hello @Hippopotsamus - yes, I fainted frequently as a teenager ( diagnosed back then with teenage angst!!!! ) and also developed tachycardia and palpitations as well as sweating and hypoglycemia, even into my 20's. I became ill with full-blown HPOTS and NCS at 42, I believe it was triggered by childbirth 5 years before that. Since the birth anyway I was wired, hyper, nervous, nonstoppable. Extremely high adrenaline, all the time, never slept. Ended up passing out and having autonomic seizures, which lead to my HPOTS diagnosis conformed by neurotransmitters and TTT. Autonomic neuropathy as well as HPOTS runs in 3 generations of females in my family, so we are definitely genetically predisposed. Some of us have EDS, one sister also has SFN. 

[MikeO]

I don't have POTS but issues with syncope or presyncope all the way back to my high school years. Always was dismissed until 2019 when i passed out going down the basement stairs and injured myself. at least now it is getting some attention

[Hippopotsamus]

@Pistol, I can identify with the high adrenaline. I remember telling my mom in the summers that when I didn’t have any school stress that I just didn’t feel well. I felt a lot better physically when very busy. Then in my 20s worked very high stress job and was very comfortable with it mentally but my body just kept declining till it broke. 

[POTSie78]

I started having full blown syncope when I was in 5th grade. I would usually blackout and fall and hit my head and had chronic headaches.  They checked me for everything from seizures to parasites and could only find ectopic heartbeats.  They said I should eventually outgrow this.  These episodes lasted through high school and after that I would have presyncope episodes.  I was diagnosed with migraines at 20 and then when I was 36 I started having what they deemed psuedo-seizures triggered by several major life altering events in my life. During this I had some issues with my blood pressure being all over. Things were quiet until my 42nd birthday when I ended up in the ER with stroke like symptoms and wound up with a POTS diagnosis. I had my gallbladder removed about  six months prior and my whole family and I all got really sick a few weeks before I went to the ER.  The other possible diagnosis that was considered was autonomic dysreflexia but I don't have a spinal cord injury other than some begnin herniated disks in my neck and spina bifida in my sacrum.  After learning about dysautonomia,  looking back I believe those issues are all related to it.

[cmep37]

Completely relate to this - the first time I had POTS symptoms was when I was 13 and having a very heavy period.  For the whole of my teens my doctor assumed my problems were gynae as I was only symptomatic at certain times of the month - now I understand it was probably the loss of blood that was triggering them.   I then got EBV/glandular fever at university when I was 19 and my symptoms became more frequent although I was still able to complete my degree, go to law school and work as a lawyer for 3 years.  My symptoms got worse and worse over time until I was fainting/greying out multiple times a day and taking a week off most months!   I finally admitted defeat when I fainted in a meeting with a top client one day - flashing your underwear to the head of operations at British Airways was not my finest hour but giving up work at age 24 was not what I had ever intended!  I still had to wait another 14 years for a POTS diagnosis and that only because I read an article one day and realised I ticked every single box - before this my diagnoses ranged from burn-out to anxiety/depression/CFS/ME/fibromyalgia and I had seen consultants from most hospital departments - neurology, rheumatology, dermatology, gynaecology, gastroenterology, and cardiology!  Hot on the heels of my POTS diagnosis came my hEDS diagnosis which explained a lot - no-one had ever suggested that the problems I had were all caused by one thing, faulty connective tissue!