When/how Did Pots Start For You?

[bamboozlem]

Hi Everyone,

I've been busy reading posts, and am fascinated by the varying onset experiences that people are describing.

I've been wracking my brains for the past two years, but I can't really think of when during the course of my life that things went down the rabbit hole. I now know that I've had EDS hypermobile since birth, but I just can't pinpoint when the POTs started.

Is there anyone out there that thinks they were dealing with POTs as a young child? Possibly even as an infant?

(Can babies even have POTS?) Or can you remember a time when you were "normal" and then suddenly, you weren't?

I can definitively say hyperadrenergic POTS was happening at least 23 years ago (as a teenager), as I tracked down a bunch of old hospital records of supine and standing heart rate/BPs, and there it is. But I believe it was happening a lot earlier.

Since I can remember (even as a toddler) I have always had severe issues with insomnia. I used to be late for school daily, sometimes even hours late for school..in elementary school! And the school was just 5 mins down the road!

The anxiety was also present at a very young age, although I suppressed it as much as I could. At night, as a 6 or 7 year old, I anxiously picked off all the wallpaper from the walls that I could reach from my bed. When it was time to sleep, I also used to self soothe by rubbing my foot in a certain way, and would wear holes into the sheets. I spent hours at night doing this.

I had many strep throat infections as a child, but don't know if this means anything.

As a baby, my mum had two issues that she was concerned enough to raise with a doctor: my freaky large pupils and my tiredness. She was told everything was fine.

So, just curious. How did POTs start for you? Can you pinpoint a date and time? Or were things weird from the beginning?

Best to everyone,

C

[Katybug]

Hi. To make a long story short, I had symptoms of autonomic dysfunction from the time I was about 5. For example, at 5 I started with significant GI motility problems. Through the years, I had various weird problems but they were always either manageable with basic treatment or mild enough that they were ignored or shrugged off by docs once the acute problem was past. Finally, at the end of Sept 2007, when I was 32, I was not well at all. I looked back through the month and realized I compiled a list of 32 very strange symptoms. Some seemed related, others didn't make any sense. But they all became noticeable and intolerable through that one month. 7 months of going to docs and one trip to my vet (who immediately said I needed to be tested for Lyme and Lyme coinfections), I found out I had Babesiosis and Lyme. From that point on, things have never been right or good. There is conjecture that Lyme can be a catalyst for activating dormant gene mutations. I'm a believer in this as I have been finding out I have all sorts of lovely gene mutations now showing up and wreaking havoc in my world. Clearly, I had all of them before but something obviously activated them or allowed them to be expressed at that clear point in time in 2007. I think I had a predisposition and the Lyme/Babesiosis was the proverbial straw that broke the camel's back.

Just 2 weeks ago, we discovered the answer to why I had excessive bleeding issues during/after my tonsilectomy in 4th grade and inappropriately heavy menstrual cycles since I was 12. I have a form of vonWildebrand's Disease called Type 2B. It's rare and genetic and considered a "moderate to severe" bleed risk. It did connect a few dots from the past when the hematologist and I were going over the test results and my history and syptoms. But it has now added more questions to the whole puzzle.

I, too, had ridiculous numbers of strep infections. My tonsilectomy (which was to help stop the infections) had to be rescheduled 4 times in a year because I kept coming down with strep infections within days of my scheduled surgery. I also had Scarlet Fever. I do believe that at some point we will find out how that connects to the whole picture, either as a cause or as a symptom of my immunology issues.

Even my hematologist said at this last visit that she feels like we keep putting more dots on the page and there are less lines connecting them. We continue to work through it but it is a long and arduous process. But, I won't ever give up because I want answers even if they can't fix it.

[dancer65]

I have not long being diagnosed but both myself and consultant believe I have had it since I was about 12. All through my childhood I was sick especially with strep and caught every thing that was going around. Recovery time was always slow,

At 12 my immune system went totally out of whack and I started having boils, ulcers, stys excema and asthma attacks, dizzy spells, cramp, shaking, fainting, and exhaution then I started loosing my hair, within four months I had beome AU total hair loss. I fell asleep in lessons at school that wasn't very popular! Because of the alopecia I was told I was neurotic, depressed, panic attacks and I am afraid that stuck.! I never believed this diagnosis but there have been many times when I have doubted my sanity!

Through out my life, I am 50, I have had a few spells of more reasonable health usually better in the summer months. Glandular fever at 18 took a severe toll on me as have my gynea problems, I eventually won the fight for a hysterectomy at 46. I have been at my worse since then when have more days and afternoons in bed than at work. Again I was told I was depressed ! A virus last year left me fainting and finally when I fell down the stairs a different Dr saw me and actually listened! He suspected POTS but ruled out addisons first. I was put on waiting list for TTT and had that last week.

[MomtoGiuliana]

I had signs of POTS probably starting in my early 20s or maybe even earlier. I've always had exercise intolerance. But POTS came on severely for me in my 2nd trimester of my first and only pregnancy.

[sue1234]

I am in my mid50s. I was born with a congenital hip dysplasia, and I had to wear a brace as an infant to correct the hip growth. Everything went as normal as I was a toddler. At 6, I began having odd bone growth, but nothing major. One finger and both big toes were curving as they grew. At 12, I was diagnosed with scoliosis. By then, my records were sent to Johns Hopkins, and I was diagnosed with Multiple Epiphyseal Dysplasia. I only mention this, as it is a genetic connective tissue disorder, but to me, kind of the opposite of EDS. For the rest of my life, it really hasn't had any effect except for hip arthritis now.

So, into my 20s and 30s, my normal blood pressure is always 90/60. I never feel lightheaded with this low blood pressure, and actually have a ton of energy up until around 40. I have NEVER been able to run, as about 1/8 of a mile in, I was always extremely out of breath, even though not anemic.

I gave my childhood/early adult history to point out that, even though I had this genetic thing, it did not affect me having any sign of POTS.

Fast forward to 10 years ago this summer. I live where it is 95 and high humidity. That summer 10 years ago, I had constant goosebumps even though I did not feel cold(how could you with that heat!!). 6 months later I suddenly was lightheaded, and it stayed for the next 8 years. That whole first year, I kept feeling like I had a bug crawling on the top of my head(sounds weird, but I will explain!). I had my husband look constantly in my hair for anything. I began seeing doctors for my lightheadedness, but no answers were found.

Anyway, about 1 year into it, I was suspecting POTS and reading all I could on it. I read that one of the meds, for some, was Midodrine. I read the side effects of it were goose bumps and top-of-the-head itching. I was like, I don't take this med, but I had those side effects!!

So, after that long story, my point is, I wonder if I got a virus that summer prePOTS that attacked the receptors that Midodrine normally acts upon. Like, I'm thinking it's the alpha receptors, and maybe I'm one of those that have the autoantibodies to them. I had to edit this, as I asked if anyone knew of antibodies to alpha receptors, and then it dawned on me, that's what the new research in POTS is checking for. I don't think straight in the mornings! So, I'm patiently waiting for that study's results so I can be tested.

I would like to lastly say, I cannot now "make" goosebumps. It is like the receptors are now blocked. When I get cold, my skin just does this odd, slight wrinkle.

[statesof]

I basically woke up one day with a bunch of symptoms following a migraine. Previously that year I had an increase in my migraine headache frequency and anxiety was worse for some reason. The first three to four months things basically just got continually worse with symptoms being added on and on.

Four years later my autonomic symptoms got much worse following one specific head rush, no clue why.

[db2504]

My daughter was recently diagnosed with POTS after what wr think she msy have been suffering with for a long time. When she was five she had ureter surgery bc hers were not formed. When she began to play soccer at seven she had exercise intolerance and was diagnosed with asthma. The inhaler never really worked and she would complain of feeling like gumby. The prdiatrician said she was nervous and she was fine. Then she began to have memory and lesrning problems so they said she had ADD. She was prescribed adderall and continued to have issues with memory. Then stomach issues surfaced again being blamed on nerves. Jump ahead to college and shes diagnosed with SVT. Last November 2014 she began to feel weak and dizzy while walking in the mall. She goes to a catdiologist and he does a ttt. She faints within 1 minute and has been in a crash ever since.

[Bigskyfam]

Oct 5, 2013.. I was on a date with my hubby and developed lightheadedness, tachy,nausea, chest pain and fatigue. This was my initial pots crash. Since I've been dx with vit d deficiency, hypermobility. But have hx of anemia, epsteinbarr and surgeries.

I was reading the above posts and couldn't help but shed a tear... Blink of an eye guys. What a journey to be on

[masumeh]

my onset was age 20, during my first pregnancy (but I also had primary mono infection at the same time)...my health was down after taking INH, a high risk medication for TB (which was prophylaxis for me, I was PPD+ but inactive)...the INH destroyed my stomach and I lost weight unintentionally due to the GI problems...then I got married, which is stressful, and exposed to a lot of new viruses because my husband is from the developing world and I had hardly ever left the US...so I got mono (Epstein Barr Virus) two months after marriage, and was 4 weeks pregnant at the same time, then had a pulmonary embolism, so was hospitalized in the PCCU, so developed pneumonia as a nosocomial infection...my health was just totally shot. Nobody called it POTS until four years later, when I was still fainting, fatigued, and short of breath. At that time, the doctor said it was probably from the EBV/mono infection. Nearly ten years after this initial diagnosis of POTS, I was diagnosed with EDS, after many joint problems became apparent...so the POTS may be from so many predisposing factors combined in my case. Some ladies get POTS during pregnancy because of autoimmune problems, which is difficult to pin down. It's been suggested to me that I have some mitochondrial disease. So, God knows. I just try to cope, see what works for me and what doesn't, and keep moving forward.

[StephanieF]

I started fainting when I was 5 years old. I've had POTS ever since and I'm 43 now. I wasn't diagnosed with POTS until five years ago. I've just lived with the symptoms--what could I do since no doctor in the span of over 30 years was ever able to diagnose me (and I went to a million doctors and had so many tests)? I'm on Florinef now so that helps but I am trying to find out more to deal with symptoms.

[ks42]

My POTS was pretty sudden onset, about a year and a half ago. It was out of the blue, and I'd been really healthy right before. I do have a history of having been sick with Lyme a couple times; in fact, I'd been completely bedridden with Lyme twice (2001 and 2008) for about a year each time, but otherwise was really healthy. And even though I'm very hypermobile, I've never had joint issues, dislocations, loose skin, etc, and I'm really sure I didn't have POTS before last year.

I was in med school, sitting in class one day, and all of a sudden thought I was having a heart attack. Severe chest pressure, shortness of breath, chest pain, and really rapid heart rate. I also had one big, massive adrenaline surge going on too, and I was pretty much in pre-syncope for about an hour (before I decided to go to the ER). Nothing was wrong aside from extremely high heart rate and blood pressure. The attack lasted 5 hours, so they knew right away it wasn't a panic attack, but didn't know exactly what it was. Over the next two months, I had a bunch of isolated incidents like that, but I'd feel normal in between. However, those attacks turned into full-blown Hyper POTS at about the two month mark (after that first incident), which got me hospitalized for a week or so because it was so bad I couldn't even get out of bed to go to the bathroom on my own. They also found abnormal EKGs (a change from all my previously normal ones) even though we still, after a super extensive cardiovascular workup, can't find anything significantly wrong with my heart.

I'd had a bunch of orthostatic vitals taken on me during physical exam classes in school in the months before I was diagnosed, and never had much of a change in heart rate from sitting or laying to standing at all. I even had orthostatic vitals taken when I was sick with Lyme, and never had an issue at that time either. So I think I can pretty confidently say my Hyper POTS really did start out of the blue.

[TCP]

1960 Born with EDS H-T 3.

1984 Contracted Glandular Fever, left with autonomic issues and Chronic Fatigue

1992 Diagnosed with ME/CFS, after I pushed for diagnosis. Professor of Neurology diagnosed me.
2007 POTS symptoms and Neuropathic pain (Small fibre neuropathy) came on suddenly hospitalised 7 times.

2014 EDS H-T 3 diagnosed after I mentioned it to GP. Rheumatologist confirmed.

2015 Diagnosed with POTS after I pushed for diagnosis. Had two tilt table tests.

Hoping to get the small fibre neuropathy diagnosed.