POTs and mobility

[Kylie]

Hi all,

i was only diagnosed with POTs three months ago and have been struggling with symptoms whilst back in university. I’m am currently adjusting to medication and the dosages still aren’t stable whilst they find the best combination to help me manage my symptoms.

the part that I am struggling most with is mobility. I find that I’m having to walk in excess of 4/5 miles a day since I’ve been advised not to drive from my doctor and had to turn to public transport to travel to and from university. Prior to starting with symptoms for POTs this would never have been a problem but now I find myself becoming increasing dizzy and weak. Luckily I have never lost consciousness whilst in public yet but I have come very close on a number of occasions. It is making my walking very unstable and it’s becoming an increasing worry. Are there any ideas on how I can improve my symptoms when walking? I stay hydrated as best I can and try to take regular breaks but it’s becoming gradually worse. Are there any suggestions? 

[vepa]

Do you already wear compression socks? I know those help me some when it comes to having to walk longer distances. Unfortunately, walking and standing is pretty much POTS biggest enemy. If it's truly getting hard, a wheelchair is an option. I use one when going with friends or family to things that require a lot of walking like museums or theme parks, because I know I would pass out if I tried to do the day on my feet. You could also see if there's anyone who lives near you and is willing to carpool? 

[Guest ANCY]

Loosing mobility is so hard to face when you're in the prime of your life. Thankfully these days they are coming out with some new and improved mobility aids, and then there's mobility service dogs that can help sometimes too. I am a full time wheelchair user so my mobility issues aren't quite the same but figured I'd share anyway, maybe someone could use the information.

 I just got a new manual chair and they also got me a smart drive or power assist. It weighs about 16 lbs, attaches to the back of the chair, and can go for about 12 miles. It can get up to about the speed of a jog and handles some pretty steep incline.  Its controlled by a watch via Bluetooth and steering is the same as a manual chair. The nice thing is that becuase it's still a manual chair and the motor detaches it is still easily liftable and can fit in a vehicle. I believe there are a couple companies selling them and can't even imagine what they'll come up with over the next couple years as technology advances. 

[Nathalie]

I know that when I was first diagnosed and started on florinef, it took pretty much 3 months to get back to a place where I could function well at work again. (I was initially off work for 6 weeks, and then it took another 6 weeks to feel "okay" again). I gradually increased my dose of florinef until I felt stable and relatively well. I was first started on 0.05mg ( 1/2 tablet) and ended up on 0.2mg (2 tablets) a day. Fortunately, this is the only medication I've needed...but that doesn't work for everyone. The tricky part is discovering what will work well for you and at what dose. And it can take time. It took time for me. And I still have my good and bad days.

 

[Clb75]

Does your university or public transportation system have a paratransit system for people with disabilities? If so, they may be able to pick you up directly and shuttle you to your classes. In the town I live in, the paratransit will pick you up at your home, school, work etc. as long as it's a certain distance from their regular route.