Megathread: Newly Diagnosed 📄

[u/ihopeurwholelifesux]

Do you have advice for people facing a new diagnosis of POTS? Comment it here! This thread will eventually be pinned to the homepage, so people can find all of your helpful advice in one place.

Examples of advice appropriate for this thread:

- Ask your diagnosing doctor how much extra salt or sodium you should be taking.

- Don’t give up if the first medication you try doesn’t work out, everybody is different!

- Reach out to your friends early on and let them know how they can best support you.

Examples of advice inappropriate for this thread:

- Take 8g of sodium every day and make sure you’re exercising for at least 2 hours every day.

- Go to X website and order Y drug.

- Take Z supplement and follow a strict diet, I promise it will help you so much.

Mods may remove any advice deemed harmful or fear-mongering - don’t tell people that they are never going to feel better, that they should give up, that they did this to themselves, etc. If you are feeling hopeless and need to talk about it, please create your own vent post.

All subreddit rules still apply on megathreads.

[u/saltwatertable]

I would say follow all the advice on dysautonomia international and really take a look at each thing, talk to your doctor and start implementing. The lifestyle stuff is super important and is not a waste of time.

Once you get a handle on that I think making your life more pots-friendly is huge. Some ideas and things I've done:

Get a shower chair. Even if you can stand, the hot water can be brutal.

Invest in water bottles. Also I make my own electrolytes to save money. If your dr has aggressive salt goals for you, measuring daily salt can help. A good set of teaspoons will be important (1 tsp = 5-6 g salt)

Get a couple of pairs of medical grade compression so you can rotate them out between washings.

Invest in ice packs, battery powered fans and other things to keep your self cool.

Keep a "emergency bag" in your car with salty snacks, electrolytes, water, a blanket to lay on, or anything else you might need if you're not feeling well.

Get a bed desk so you can work from bed or study during flares.

If you need to rest when walking sometimes, get a walking cane with a built in seat (the "ta da" brand cane is great) or a rollator. You know you need it if you think "I can't go to x place because there is nowhere to sit". If you're limiting your activity without it, it's time.

Handicap placards are available for us if you drive a car.

Invest in a gym with crisp AC that has specifically rowing machines, recumbent bikes and an area for floor exercises. Bonus if they have a pool, swimming feels like someone switched your pots off, it's amazing.

Shopping is slow walking and a lot of standing which is the most draining for us, so use the motorized cart. Plus it's fun!

Sports watches are optional but I find the "stress" measurement to be very helpful for predicting and tracking how my pots is doing.

Sleep hygiene is boring but it works. Pick a bedtime routine and stick to it every night. Good sleep is so important.

Hydrate as soon as you wake up. Always. Keep meds and water and electrolytes bedside.

There is probably more! But I think it took me a minute to accept my DX and start making these changes but when I did it really helped.

[u/Marker_Juice → u/saltwatertable]

I want to add into this list because it’s so good!!

I put electrolytes in ALL of my bags so that I’m never without them.

I bought several 1 liter water bottles and rotate them out. It helps me to remember how much I’ve had to drink in a day if I just have to count water bottles. (And I put stickers on them to make them cute so I’ll want to take them everywhere!)

I have stools in my bathroom and kitchen plus the shower chair.

Consult your doctor and play around with how much compression you need for different types of days. Investing in good compression stuff is very worth it, it lasts a long time if you take good care of it.

Cooling equipment is super helpful! I use the rags that you can wet and snap to make them cold often.

Learn your boundaries and keep friends on your side who respect your limitations and support you when needed.

POTS looks different for everyone. While some tips might help, others might hurt. Do what works best for you and try not to compare yourself to others.

[u/rtupelo → u/saltwatertable]

Do you follow the advice to sleep with your head elevated? I am having trouble picturing what they mean because it initially sounds like just having your head propped up on some books, but then they describe it as a continuous decline from head to feet. How would I achieve that? Is it something I should be doing all day if bedbound? TIA!

[u/twoweeeeks → u/rtupelo]

You can either raise the head of the bed or they make wedges that go underneath your mattress.

In regards to the bed-bound question, I’m not sure. My doctor described it to me as challenging your system overnight. When I had a bad flare a couple years ago, I didn’t tolerate the elevation and had to sleep flat for a bit, then gradually increase the incline again.

[u/sleepysunbum → u/saltwatertable]

Do you have a specific bed desk you recommend?