Anyone been diagnosed with POTS - Postural orthostatic tachycardia syndrome?

It depends on your severity of your symptoms. My wife has POTS and we have been managing it for about 7 years now. Universally, a diet high in sodium, magnesium and potassium is key. Literally, salt everything. My wife also has to supplement with potassium and magnesium. Her medical treatments include sodium chloride infusions every other week and used a beta blocker when she wasn't pregnant (probably going back ok one since she is post partum).

Weight training also seemed to improve her condition when it was focused on the core lifts (DL, squat, OHP, Bench) since it engages a lot of muscles.

I also have POTS and vasovagal syncope and take midodrine to manage my symptoms. As a distance runner, by far the most important things I can do are to stay hydrated and listen to my body when I work out. I mostly drink Gatorade while I run, though I do get dizzy when I push too hard for too long (longer than 10 mile runs can cause prolonged lightheadedness unless I take it steady). Weight training has been very helpful for me as well.

justkeeprunning91 wrote: »

I also have POTS and vasovagal syncope and take midodrine to manage my symptoms. As a distance runner, by far the most important things I can do are to stay hydrated and listen to my body when I work out. I mostly drink Gatorade while I run, though I do get dizzy when I push too hard for too long (longer than 10 mile runs can cause prolonged lightheadedness unless I take it steady). Weight training has been very helpful for me as well.

10 mile runs might be too much too far? I fall over walking down my hallway! Maybe I need to take my doctor seriously when he says my symptoms are severe.
Seriously, though, was running something you have been able to take up since diagnosis and treatment, or were your symptoms never severe? If the former, it would give me great hope for midodrine helping me build at least normal stamina.

Not POTS, but I also have a type of dysautonomia. It's rough navigating it, but it gets better. The thing that helped me the most was figuring out a lot of my "triggers" (and yes, there were/are a lot of them). When do I get dizzy? Is there a pattern? When am I most likely to fall down? I pay special attention to my temperature, how long I've been standing, stress levels, sleep, nutrition, etc. Once you start narrowing down what's causing symptoms, you can more easily manage them. It doesn't help *everything*, and even if you do all those things "right" you might still have problem days. But managing symptoms seems to be a key part of this illness.

Don't go without the salt! I bring small packets in my bag wherever I go. Don't go too long without eating, make sure you drink plenty of water, and don't be afraid to sit or lay down if you need to. Also, check to make sure you don't have any other conditions that could affect this one. Make sure any and all medications are lined up and taken if necessary.

Running (especially in the heat) was always something that made me incredibly sick. Weight lifting was out because of the lifting above my head. Etc. However, swimming is an activity I can do without worrying about gravity putting me on my butt. You might want to ask your doctor if they think that would be a safe activity for you.

If standing/fainting in the shower is an issue, they have shower chairs you can use to sit on. I seem to manage okay without one now, but I know I miss when I used to have one. High recommended to get through those tough days.

Also, seconding the "Gatorade sucks" mentality. Those drinks are just sugar water with a little salt. Another recommendation for Nuun tablets on this end. I bought bulk on Amazon, and they come in convenient tubes you can slip in your bag to supplement whenever you need it.

Know the signs and symptoms of a concussion, and do not be afraid to go to urgent care if you bang yourself that way. Brain swelling is no joke, and you don't want your condition to go from annoying to deadly because you didn't want to spend a day/evening in a clinic/hospital.

Keep a log of your symptoms and what's happening. Be detailed. It's easier to have an intelligent conversation with your neurologist/cardiologist if you have a record handy.

There's a bunch more, but I feel like I'm rambling. I hope this helped a little. :-)

Hi! I have Hyperadrenergic POTS. Recumbent bike is the best form of exercise for it that's what I do.

I disgree about the salt. I have high blood pressure, I am on high blood pressure meds and have to eat a low salt diet. Only take the advise about salt if you know your bp is pretty low. if it is normal or high, salt will not do anything. I drink vitamin water zero mixed with water when I work out to get electrolytes without sodium. I also take beta blockers plus lisinopril.

Standard POTS treatments really vary from patient to patient, all the standard advice doesnt work for me because hyperadrenergic POTS is very different than normal POTS.

Colorscheme wrote: »

Hi! I have Hyperadrenergic POTS. Recumbent bike is the best form of exercise for it that's what I do.

I disgree about the salt. I have high blood pressure, I am on high blood pressure meds and have to eat a low salt diet. Only take the advise about salt if you know your bp is pretty low. if it is normal or high, salt will not do anything. I drink vitamin water zero mixed with water when I work out to get electrolytes without sodium. I also take beta blockers plus lisinopril.

Standard POTS treatments really vary from patient to patient, all the standard advice doesnt work for me because hyperadrenergic POTS is very different than normal POTS.

High salt diets is one of the main recommendations for POTS. You just so happen to have other medical conditions that throw in more variables.