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.
Sorry you have both of those. My POTS is the hyperadrenergic type, caused by hypermobile type Ehlers Danlos syndrome (hEDS). I guess hEDS can be described as somewhat similar to M.E., but as a "bonus" it makes people's joints extra bendy and at risk of popping out of place. The POTS medication I'm on, Pyridostigmine, is currently in clinical trials to also treat ME/CFS and exercise intolerance. It would be interesting if the medication turns out to treat both, as it might point to a possible common root cause for the conditions.
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 💕💝💕
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.
@@bethgallery1140 you're welcome 😊 I love using baby powder instead of dry shampoos because dry shampoos are full of bad ingredients, the results aren't great and they are pretty expensive.
@cindykrista please do your research properly, before spreading misinformation and half-truths on the internet. There are hints that it MIGHT increase the risk for certain cancers when you use it regularly over a long period of time on mucous membranes or inhale it (which should not be the case on your scalp?!), but it is not proven.
@cindykrista I never gave medical advise to anyone. So not only spreading half-truths out of context but also talking bs to and about people who correct you? Seems like you are neither wise nor calm. I don't care how old you are, how many kids you have or whatever. Also you don't know nothing about me, who I am, what I know, what I have experienced (and also, again: all this does not matter because this has nothing to do with it because facts and science don't change with your personal life experience), and accuse me of things I literally never said. I believe in science. Not in you. So yeah, do your research and stop harassing people online with false accusations and misinformation.
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?
Sophie Hobley oh wow thank you so so much for that tip I will definitely try that next time! Someone else mentioned to me about getting a bottle of cold spray to use on my face and back of my neck when I’m warm so defo will try both of them next time it’s like that!😘 Oh wow that’s very high and on Fluids as well 😩 are you feeling any better now? I’m feeling better now thanks so much for asking, just having a lot of feeding tube issues again so trying to get on top of that now! Xxx
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. 🌸
I normally don’t get grumpy I just get on with it but I was sooooo moody the other day I felt like I would just shout at anyone who tried to talk to me 😂😂 thank you so much lovely! The 50% off is amazing we definitely made the most of it lol! It’s for the whole of August Monday-Wednesday! Xx
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 have actually invested in a shower chair and they really help don’t they, for little things like shaving, shampooing etc but I still find if I’m flaring it’s best not to risk it in the shower just incase! Very glad they’ve helped you and I hope you are well! ❤️ xxx
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
hey! I don't know if you've been diagnosed, but I deal with a similar thing. My heart rate will randomly shoot up even when I'm lying down, especially at night when I'm sleeping. However, it also goes up much much higher when I stand. So I'm also confused as to if I have POTS alone or something alongside it. What did the doctors decide for you if you feel comfortable sharing?
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’m glad you agree about the heat, it’s so strange isn’t it! Oh wow thanks so much, I’ve always thought about getting one but as the same time it won’t physically help me other than monitor it so I’ve been unsure but might have a look into the one you’ve got! So sorry you suffer too😫 sending you all my love xxxx
I wish i cud run away in summer or move but cnt I love outdoors and at most these days i like to lay out if i cnt do much but these summers r brutal and long. Id escape nortnwest if i cud afford to hide away.
Need chair. I use soSoak chair to shower. I broke my nose collapsing long time ago and scared me i had no clue where i was or what happens i was alone and in pain blood everywhere and scared. My soSoak chair us the best thing ive bought in a decade ir my whole life really.
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
![Felix "Unfair" | [Stray Kids : SKZ-PLAYER]](http://i.ytimg.com/vi/Oswujxm2Ag0/mqdefault.jpg)
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.
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
Sorry you have both of those. My POTS is the hyperadrenergic type, caused by hypermobile type Ehlers Danlos syndrome (hEDS). I guess hEDS can be described as somewhat similar to M.E., but as a "bonus" it makes people's joints extra bendy and at risk of popping out of place.
The POTS medication I'm on, Pyridostigmine, is currently in clinical trials to also treat ME/CFS and exercise intolerance. It would be interesting if the medication turns out to treat both, as it might point to a possible common root cause for the conditions.
Miss you! I pray you are out of Hospital and doing better! Re- watching some of your old videos!
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 💕💝💕
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’ve never tried that!! Thank you so much, defo going to purchase some! 😅❤️❤️
@@bethgallery1140 you're welcome 😊 I love using baby powder instead of dry shampoos because dry shampoos are full of bad ingredients, the results aren't great and they are pretty expensive.
@cindykrista please do your research properly, before spreading misinformation and half-truths on the internet. There are hints that it MIGHT increase the risk for certain cancers when you use it regularly over a long period of time on mucous membranes or inhale it (which should not be the case on your scalp?!), but it is not proven.
@cindykrista I never gave medical advise to anyone. So not only spreading half-truths out of context but also talking bs to and about people who correct you? Seems like you are neither wise nor calm. I don't care how old you are, how many kids you have or whatever. Also you don't know nothing about me, who I am, what I know, what I have experienced (and also, again: all this does not matter because this has nothing to do with it because facts and science don't change with your personal life experience), and accuse me of things I literally never said. I believe in science. Not in you. So yeah, do your research and stop harassing people online with false accusations and misinformation.
Next yr im buying cooling blankets and pillow. I also sleep on floor for lots of reasons but 1 is cooler too.
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?
Sophie Hobley oh wow thank you so so much for that tip I will definitely try that next time! Someone else mentioned to me about getting a bottle of cold spray to use on my face and back of my neck when I’m warm so defo will try both of them next time it’s like that!😘
Oh wow that’s very high and on Fluids as well 😩 are you feeling any better now? I’m feeling better now thanks so much for asking, just having a lot of feeding tube issues again so trying to get on top of that now! Xxx
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
I got outdoor daybed and lay out when i can do it but only lasts till the heat hits but a outdoor bed makes so much diff to me being outside
Thank you for sharing your experiences with Pots.
get well/feel better soon
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. 🌸
I normally don’t get grumpy I just get on with it but I was sooooo moody the other day I felt like I would just shout at anyone who tried to talk to me 😂😂 thank you so much lovely! The 50% off is amazing we definitely made the most of it lol! It’s for the whole of August Monday-Wednesday! Xx
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
Showerchairs have changed my life! I highly suggest it!!!
I have actually invested in a shower chair and they really help don’t they, for little things like shaving, shampooing etc but I still find if I’m flaring it’s best not to risk it in the shower just incase! Very glad they’ve helped you and I hope you are well! ❤️ xxx
I don’t even bath anymore 😅
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
hey! I don't know if you've been diagnosed, but I deal with a similar thing. My heart rate will randomly shoot up even when I'm lying down, especially at night when I'm sleeping. However, it also goes up much much higher when I stand. So I'm also confused as to if I have POTS alone or something alongside it. What did the doctors decide for you if you feel comfortable sharing?
@@josiecooper3855 hiya I've now been told I have pots by my new cardiologist. I've made some videos on my channel x
Same!
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’m glad you agree about the heat, it’s so strange isn’t it! Oh wow thanks so much, I’ve always thought about getting one but as the same time it won’t physically help me other than monitor it so I’ve been unsure but might have a look into the one you’ve got! So sorry you suffer too😫 sending you all my love xxxx
I wish i cud run away in summer or move but cnt
I love outdoors and at most these days i like to lay out if i cnt do much but these summers r brutal and long. Id escape nortnwest if i cud afford to hide away.
Need chair. I use soSoak chair to shower. I broke my nose collapsing long time ago and scared me i had no clue where i was or what happens i was alone and in pain blood everywhere and scared. My soSoak chair us the best thing ive bought in a decade ir my whole life really.
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
I always have fainting when I'm pregnant or on the pill
Your boyfriend cracked me up driving past that McDonald’s window 👋🏽😂😂
Hahaha he’s such a clown sometimes 😂😂🤪 xxx
Get BP machine ❤