How Long Has Everyone Had Pots?just Curious

[nikigrl8883]

hey i am curious to se how long people in this forum have actually had pots or pots symptoms....and when and if they found out what casued it (how long it took) ive been sick since late april and had the pots symptoms i belive since then....not sure what casued it yet,,,,but who knows maybe it is lyme lol ///im willing to try everything to stop this ....also have your pots symptoms worsened over time or gotten better.....

[Wufflebear]

Well I am 34 now, and I started having symptoms at 3 years old.

[AJVDK]

I got sick when I was 17 I was dx with NCS at 19, and POTS at 26, I am now 27.

[desiree942]

My POTS onset started in May 2004, in Nov. 2004 I had positive tilt test for "orthostatic hypotension" but over time strongly I suspected I had POTS. I made a little improvement with my local doctors who gave me the first line meds but quickly said there was nothing more they could do. Finally I decided at the end of 2005 I would seek an expert opinion and waited until June 2006 to get an appointment with Dr. Grubb, that was the best thing I ever did even though it was expensive to travel across the country and not covererd by insurance. I am getting progressively better over time but I have made the most improvement over the past 6 mos. since I saw Dr. grubb and he diagnosed me with POTS, gave me cymbalta & peace of mind that my symptoms were real, and his professional opinion that I'd probably continue to improve and he kicked my butt to expercise and rebuild leg strength. He told me that the marker people who show improvement ususally continue to improve until their sysmptoms are either gone or managable with meds.

This thanksgiving I was thankful that I was much better than past years and everyone commented that I seemed better. I was able to play in the yard with the kids, cook som side dishes and not be 100% consumed in managing my POTS symptoms (an ssnri helps alot with that).

My personal opinion -- recovering from POTS does happen on a timetable, what little research they have suggests 2-5 years on post-viral POTS. I think once I accepted that whatever was wrong with me was not going away any time soon, like a cold does, I was in a much better place. I learned to be very very patient, take each day as it came, and NOT let myself get too hopeless. Dr. Grubb gave me hope and as he has written, hope is as valuable as the "magic pill" we seek as patients.

[Rachel]

I've had POTS for 12+ years.

It took 2 years or so to get a diagnosis.

Mine has an auto-immune cause. A study at Johns Hopkins found that there is an antibody in my blood to m2 muscarinic receptors. I'm not sure if that is rare or not. I've never found anyone else with the same problem. But also, I don't think those tests are done often. I've tracked down my records from Johns Hopkins, but unfortunately they don't include the study that was done. So I only have the few details that were in a letter to my other doctor.

My symptoms have gotten worse, better, worse, better, worse again, and now much much worse.

Rachel

[morgan617]

I'm 51 and have been sick all my life, however was able to work (well, forced myself to work) and stuff till I was 48. I have gotten progessively worse over the last 3 years. From working to disability to not driving, to a wheel chair, a pacer etc, etc.....

[taylortotmom]

I do not have POTS but a different type of dysautonomia which involves my central and peripheral nervous systems (to quote my cardio). I started getting severe symptoms four years ago and have gotten progressively worse (objectively speaking- not just symptom wise) despite aggressive treatment. However, I must stress this is not the typical course for most folks (thankfully!).

Carmen

[briarrose]

I was diagnosed 5 years ago but had my first syncopal episodes in 1983.

[cardiactec]

started getting symptomatic at 19, diagnosed with POTS at 21, i am now 24.

[Guest dionna]

started fainting at 18 diagnosed with NCS at 19 then later that year POTS. so it has been 2 years and almost 4 months.

dionna

[DSM3KIDZ]

Completely healthy Aug 22, 2004 and horribly sick Aug 23, 2004. So it's been 2 yrs and a few months. I feel I'm slowly improving....................or I'm just getting used to it.

Dayna

[MomtoGiuliana]

First noticed mild symptoms early teens to 20's. Diagnosed when symptoms became severe during and after pregnancy at age 33/34. Well-controlled with minimal medication and lifestyle changes for now.

Katherine

[Gracefulprincess]

well i was 25 when i started getting sick..it was july 2003. It wasn't till over a year later in Sept 2004 when i was dx with NCS, then a month later was dx with POTS. So i've had NCS/POTs for aabout 3 years. My symptoms are up and down all the time.. things seem to be getting worse.

[Guest dionna]

http://dinet.ipbhost.com/index.php?showtop...934&hl=long

this is a previous post of the same question. it may give you some other members answers. i thought they had done on before but i just now found it for you. good luck.

dionna

[MightyMouse]

I've been symptomatic since birth with heat intolerance and problems waking in the am. I was four when I first fainted.

Nina

[Aprilmarie52]

I have been having symptoms since I was 17. I am 23 now, so it has been 6 years. I have good days and bad days, but I am usually able to function.

[persephone]

First fainted at 12. Got diagnosed 11 years later. Now 25. Symptoms have worsened as I've got older. But my coping is better and I'm still functioning. The illness stays the same size and isn't getting smaller, so I make my life bigger!

Cyclical- can have weeks of feeling fantastic, and then crash completely for months. Can't sit up some days- others can go to the gym.

Blood pressure flatlines. Related to menstrual cycle.

[mkoven]

I first felt like fainting four years ago at age 35 after a long, hard run. It happened several times that week with no apparent trigger. Afterwards, I would sometimes feel like fainting right before my period. But overall, very intermittent and not really a problem.

Finally this spring, I started having recurrent near-fainting episodes. Initially, just before my period. Now, it's all the time. There are days when I feel like I spend most of my time trying to avoid fainting. Definitely worse, though, premenstrually. Peeing and standing are also triggers. My allergies also make it worse. I was on prednisone this summer and the ncs was much worse as I came off it. And since I've got a bad back and can't sit for long, I've had days where sitting was agony, but standing perilous. My choice: killer sciatica or passing out.

Don't know where this is headed. Stockings and salty beverages help. I've started tilt training (got doc's approval) and it helps some. I'm up to 8 minutes. I'd love to make it to 15. I haven't yet started meds.

I was diagnosed with EDS 18 mos ago, so that's probably the mechanism. My sloppy joints also only started making mischief about 5 years ago. Before I just thought I was a wimp--easily worn out, sore, injured. I just thought I had bad luck with more joint injuries than typical for someone my age...

[JenniferInOhio]

I have no idea. I've had mild symptoms, I think, for years. I noticed the tachycardia 2-3 years ago.

[willows]

My first real bout of POTS was on the 7th February 1970 at 8 am just after breakfast , but they think I've really had it since birth as my medical records are somewhat 'interesting' according to my own GP who managed a few years ago to call them all from the county I was born in.

So thats now 36 years and holding from my first 'kiss the floor and lay there for 3 hours' to now ,but 50 years + from birth ( crumbs that old ) ..................says 'Granny' here

Willows............still going strong with a smile on her face

[dizzygirl]

born with it.. I quite literally was born with tachycardia.. i had symptoms my entire life.. the dots where never connnected... got worse at 12.. got more worse at 19-20.. got diagnosed FINALLY!!!! at the age of 20.. Im now 24...

[Tessa]

It seems I had symptoms since I was born as I refused to be breast-feeded and they had to give me a special milk. (now I know that I am gluten and casein intolerant).

I started fainting when I was a child, but never knew why.

I have always been a "difficult" person. Some food made me feel sick, could not carry out some sports, because I started feeling really sick and other symptoms...

I noticed the tachycardia a few years ago.

I cannot exercise since 10 or 11 years ago.

I am sure I have POTS, not diagnosed yet, but hope to be on the way to it.

[masumeh]

Periodic fainting and low blood pressure since age 17 (I was overall healthy, so it was not paid any attention), not really POTS symptoms until infectious mono at age 20. It got much better over the years. I'm now 25.

How? I think I was somehow predisposed, since I had low BP, low body wieght, periodic fainting, and IBS already. Then, the mono infection just triggered the whole shabang, (nausea, fatigue, exercise intolerance, dizziness, tachycardia, noise and motion sensitivity, memory problems, etc.).

I've read that 30% of people in the developed world are not exposed to mono as children. (In underdeveloped countries, 100% exposure by age 10, 90% even by age 18months; they don't get POTS from it.) For that 30% (like me), exposure during adolescence or adulthood can mean complications, including POTS, it seems from research so far. Mono, which comes from epstien barr virus, is in the herpes family, meaning it rests in the nervous system. No wonder it can potentially cause autonomic nerve damage.

[Ernie]

Hi,

All my life, but disabled for the last 7 years.

[violahen]

I was born with POTS. I have been symptomatic ever since I can remember...fainting, etc. I was diagnosed with a "cardiac condition" at age 20. (My parents refused to believe I had something wrong with me previously...I just needed to "get control" over myself they siad...

I was offically diagnosed with POTS at age 36! It's been a long haul. I am 40 now.

Kristen