Day in the life with POTS | Dealing with POTS in the heat! | Weekly Chronic Illness Vlog

Thanks for the video! I have hypermobile type Ehlers Danlos syndrome, which causes my hyperadrenergic POTS, gastroparesis, skin issues, join issues, pain, fatigue, and a lot of other problems. It took a long time to get diagnosed, and a lot of trials on various medications before finding what worked best for me. POTS is so difficult to treat because there's not a "one size fits all" medication for all patients. Everyone is a unique individual, and what works for one person might not work for another. What worked best for me is the vagus nerve stimulating medication Pyridostigmine to treat my POTS and gastroparesis/dysmotility; and low dose Clonidine further treats my POTS while also addressing my migraines, insomnia, restless leg syndrome, and anxiety-like symptoms. Calf compression sleeves and putting on more leg muscle through physical therapy has also helped to mitigate my POTS symptoms a bit.

Hey, you & me both girl. Sadly I have M.E too & the type of PoTs where salt isn't good. So trust me, I feel you

Miss you! I pray you are out of Hospital and doing better! Re- watching some of your old videos!

Oh, gosh, i totally understand. I have pots, etc. And live in a place that reaches 116* Fahrenheit in the height of summer. Im miserable and usless.

One tip that I've learnt for when its really hot is instant ice packs - you can buy them from amazon and you just burst the inner pack (which can be a bit hard) and it turns into an ice pack that you can put on your wrists or the back of your neck or whatever to cool off a bit - they don't last for too long but they really are very cold. The other good one is cooling towels - i find they last longer but have a much weaker effect. Im so glad its finally cooled off a bit - my HR was jumping to 175bpm everytime I moved despite me being in hospital with an IV delivering another med but I was still getting the 100mls of fluid an hour on top of oral intake. Ugh!! I think its better abroad because its less humid. How are you feeling now?

Showerchairs have changed my life! I highly suggest it!!!

If my hair is greasy and I'm not able to take a shower I use some baby powder. Just apply a little bit on your scalp, let it sit for a few minutes, then brush it out. It's cheap, you can do it while you lay down and it works great.

I totally understand what you are feeling , I am nauseous everyday . Not being able to do anything but be in bed, I have air conditioner on through the house plus the one in my bedroom . I feel so rotten my husband had to help me bath 🛀 I feel like you & all the other millions who are suffering like we are , it just makes me cry 😢 😢😢 sending you love & blessings 💕💝💕

Thank you for sharing your experiences with Pots.

Try chewable / dissolvable salt sticks these work wonders I’m mainly NBM (nil by mouth) and pop the salt stick dissolved in warm sterile water down my jej via pump with my fluids (sometimes I include ORS, Nuun, diaoralyte etc with my water and salt sticks plus my forcevals) it helps my pots especially in the summer when it kicks up a few notches ps. Fold up shower chairs are fab for those bad days, Apple Watch is fab for POTS imho, I have a bp machine & pulse oximeter also though James is hilarious lols and I adore those pj’s fellow Zebra 🦓 ♥️xx

You have every right to have the odd grump day ❤️ , I have my fair share 😂 I usually love hot days but do find the sun and heat can be really exhausting sometimes, can't imagine the next level affect on you though. Love how you guys went from Subway to Mc Donalds and got SO many cheeseburgers....my fiancee would love doing that😂😂 I wish we had 50% off in Aus like you guys during Covid. 🌸

And I know this video is old but yes you should get a blood pressure monitor if you don't have one because you need to know what type of PoTs you have if you don't already. Plus it's always good to keep an eye it changes

I'm in the middle of being diagnosed with pots by my cardiologist, just waiting on tilt table test...(he did the test on a heart rate monitor for the time being and my heart rate went well over 30+ beats when I stood up) but I'm confused though, because like you, my heart will also go fast sometimes even without standing, just if I'm sat down so there unsure whether I have pots plus inappropriate sinus tachycardia on top of it....but watching this it could be pots alone

I always have to use my bp machine, but I do suffer with really low bp, especially when I stand my bp goes through the floor. I got an omron machine and took it the the nurse and had it calibrated to make sure its right. Sometimes I when feel even more awful and weak and not sure what is making that happen i check my bp and hr and most the time its really low bp with low hr or high hr. I have pots aswell but do get very low hr aslo. It sucks. So right uk heat is so much harder that being abroad. I was explaining that to me American friend yesterday.

I have recently got into this shit 😒. Can you please tell what symptoms you experience during heat intolerance and what happens If u don't cool yourself up.. I feel extreme burn on my face then headache and eyes pressure.. burning sensation on face dosnt go away for 6-7hours

Your boyfriend cracked me up driving past that McDonald’s window 👋🏽😂😂

I always have fainting when I'm pregnant or on the pill

Get BP machine ❤