Okay so I wrote a bit about what POTS is and my story of living with it. Now I’m going to write a bit about HOW I live with it- what works/ what doesn’t work for me. (Keep in mind, fellow Potsies, that this is just my personal successes with treatment and what works/doesn’t work for me may not be the same for everyone.)
And so we go.
1) FLUIDS FLUIDS FLUIDS
There is NOTHING more important to someone with POTS than peeing non-stop. Seriously. This means you’re doing a good job on your fluid intake. On a good day- one where my symptoms aren’t too too bad- I still drink over 120 ounces of non-water. Anything works, but preferably drinks high in sodium or electrolyte content- nuun tablets, low-calorie gatorade, and powerade zero are my typical go-to drinks. It also helps to have a 32-oz Nalgene water bottle to refill on my desk at work (go green and up the intake!).
This has probably been the hardest part of having POTS so far. I’m supposed to exercise about an hour every day- especially on bad days where I want to do nothing but lie in bed and sleep until this all goes away. I’ve been told to build muscle tone (so my body can send blood back to my core more easily) and work up to being able to do cardio.
Keep going. Back in March and April, I was in bed. My cardiologist forced me to go to the gym twice a day, knowing how bad I felt, and needless to say- I didn’t like it one bit! (I still don’t, some days.) I was scared of fainting, but I still did it because there was hope that I’d feel better. I could hardly stay on a reclined bike for five minutes without my symptoms getting so bad I had to stop during the first few weeks. Now, I go to the gym every morning before work and this morning I biked 2.5 miles (on a regular bike yay!) and then ran 2 miles on the treadmill. That’s not to say it’s easy, because I still get light-headed after a short while, but if you push through it, it does get a little better eventually.
My advice- Keep going. Back in March and April, I was in bed. My cardiologist forced me to go to the gym twice a day, knowing how bad I felt, and needless to say- I didn’t like it one bit! (I still don’t, some days.) I was scared of fainting, but I still did it because there was hope that I’d feel better. I could hardly stay on a reclined bike for five minutes without my symptoms getting so bad I had to stop during the first few weeks. Now, I go to the gym every morning before work and this morning I biked 2.5 miles (on a regular bike yay!) and then ran 2 miles on the treadmill. That’s not to say it’s easy, because I still get light-headed after a short while, but if you push through it, it does get a little better eventually.
Okay so I know my mom is reading this. She’ll be raising her eyebrows and giving me the look that says “Oh you’re going to talk about sleep now?? You should actually sleep as much as you’re supposed to before giving other people advice on that…” While that may be true, let’s discuss what I’m supposed to be doing, not what I am doing.
8.5 to 9 hours per night is what I’m supposed to get. This is COMPLETELY impractical for a college student, but I try….It does help a bit to get more sleep- like if I were to pull an all-nighter, I would have some MAJOR problems being upright the next morning, so good luck with that Potsies!!
I have so many of these at home:
I’m on a whole cocktail of fun. Want the list? Here it is:
–Salt tablets– 8x 1000mg/day
–Fludrocortosone– 2x 0.1mg/day
–Midodrine– 2x 2.5mg/day
–Fluoxetine– 1x 10mg/day
–Metoprolol– 1x 12.5mg/day
(The name of the med is a link to more info about it. Enjoy!)
5) OTHER TREATMENTS
– Compression stockings– The high intake of salt causes my ankles to swell sometimes, so these help to alleviate the swelling. (Note: raising my feet doesn’t make the swelling go down for me, I just have to drink extra fluids and wait it out when it does happen)
– Problem solving– I don’t normally buy into the whole concept of therapy, but I found a dr who is more problem-solving than psychoanalyzing which has been really helpful to my efforts to get back to living more normally.
– Low-histamine diet– This worked pretty well I think and made my symptoms a lot less dramatic in their fluctuation. I did it for around 2 weeks but then got lazy and ate foods on the restricted list. So sad. I really should get back to doing this diet, but I REALLY like cupcakes…. Warning: this diet will most likely make you lose weight. I lost about 12lbs in the 2 weeks I did it. It’s very healthy food, but make sure your calorie intake is where it should be for you (mine was way too low without realizing it.)
– Aromatherapy– Okay so it sounds kinda crazy but I’ve tried everything I can at this point from a western medicine perspective, so why not try eastern medicine? I just recently got a smelly stick (a roll-on tube) of essential oils that supposedly help to calm and redirect thoughts. I don’t know about that so much, but the smell is really overpowering so if I feel really bad I take out my magic smelly stick and that smell is all I can focus on. It definitely redirect thoughts away from my symptoms… in a kind of weird way.
– Zen Buddhism– Another crazy eastern medicine thing. I like theoretical concepts so I’ve been reading up on Zen. It seems pretty interesting in that it’s really personalized. If you want to know more about it, read this book , it’s amazing! and check out the rest of the site while you’re at it.
I’m not sure how well Zen whatever will work, but I’ve kind of plateaued with my symptoms so I’m willing to try anything to keep moving in a good direction. I’ll give more of an update on that as I go along.
As always, If there’s anything in here so far that you can identify with, keep reading as I post. If you can’t relate, but want to read more about my journey as I carry on, keep reading. If not, then I hope you learned something about POTS.
Please message me!- firstname.lastname@example.org
To all my fellow Potsies, good luck out there!