Hello All
I am new to the forum. I have had symptoms of POTS for over 4 years. When it started I was still very functional (not on any meds) just couldnt exercise the way I use to. Now I can barely stand for one minute while off my meds. In addition, over time other symptoms have presented themselves....GI disturbances being the most bothersome. I was wondering if anyone else has had a similar decline in functional ability. And if my symptoms have worsened so much does that mean I'm more likely to progress to autonomic failure? Please let me know.
A very nervous 25 year old.
Thanks!

hey, iam new here too and i have been having symptoms of P O T S And/or IST for about the same amount of time as you and mine has just recently been getting worse within the past year.im 22 years old. im sorry to here that yours is too. im not sure about the full autonaumic failure or not, but i would like to know too...so anyone?

I am new also, hey newbies. I was diagnosed three years ago. I was ok just dealing with small periodic problems back then, but now... I struggle with walking to the mailbox and doing regular work. Small things are now big feats. I've noticed through my own un proffessional research that it does seem to slowly get worse but luckily levels off. Most people don't go into autonomic failure. Those cases seem to be few. Read up on some people personal stories, it might put you at ease just by knowing what's the "norm" with us.
A dysautonomic 21 year old. Lol.

hi 'newbies'

in retrospect, i had very mild symptoms as long as i could remember - mostly the occasional inability to stand in one spot for a period of time without feeling like i wanted to pass out. i always assumed low blood sugar but never went to a doc.

feb 14, this year, it hit me hard and i went from an active normal person to a weak invalid. after i figured out it was probably pots, i started increasing water and doing recliner rather than sitting up for work. i gradually began improving until i was able to go to mayo and get a formal diagnosis and treatment plan.

i still struggle daily, but i do see improvement. i still have the heart racing and palpitations, and the shortness or breath, and the tiredness. but i can function more than when it first hit.

my docs believe mine is the post viral kind and have given me a 2-5 year prognosis for full recovery...with a 6 month period (end of the year) when i'll be mostly functional as long as i manage it.

i drink lots of water, take atenolol, increase salt, and have started a very slow exercise routine. i started at 2 minutes a day and am up to 7 minutes a day on a 'gazelle edge' which is like a ski machine.

this is my experience and everyone's is different. so...i can't answer your question definitively. its a person by person basis.

It depends, some are lucky and get better. As other discussions have went over it varies as to what is caused/triggered it.

I don't have a POTS diagnosis, just a NCS one, but originally I didn't have or only occasionally had tachycardia when standing - now I have it every time I stand unless I take a higher then usual dose of midodrine and once that starts to wear off the tach comes back. I've also start developing different GI issues over the last few months, more nausea and vomiting up food several hours after eating... :/

While I don't fall regularly like I used to, I don't feel like anything has improved, but should it when I've had problems for nearly 15 years?..

Welcome newbies! I was diagnosed with POTS, IST, and afib around five years ago. Mine seems to come in seasons or clusters. I may do well for a month or two then have a pretty bad crash for awhile then get better again. The hardest thing is that what might have worked before doesn't always work later. Meds can stop working and salt/water levels always seem to need adjusting. It's also a matter of learning what triggers are (food, caffeine, stimulation,etc.) and changing your lifestyle to adapt. I never give up hope for this to disappear as fast as it came but in the meantime, I keep plugging along. The times when I am feeling almost normal are the times that really keep me going. That and my faith....I wish you all the best.