The hands free fan is AMAZING! I Worked as a PA for a lovely lady with Muscular Dystrophy and she was always freezing cold because of the lack of muscle mass so the heating was always on in her house and I was always getting her set up with heated blankets and hot water bottles etc and meanwhile I’d be overheating like crazy and I almost passed out on the daily from being unbearably hot 🥵 That fan absolutely SAVED ME and didn’t affect her at all as it was only directed on my face. Spraying water on my face with a spray bottle every so often really helped too as well as drinking a huge amount of water although I probably could have done with those electrolyte thingies as an extra boost if I’d known about them! I did have lucozade sport drinks sometimes which helped but probably isn’t as effective as those sachets
Thanks for the tips!! When I didn't have air conditioning or money to buy things, I would fill a 2-liter plastic bottle 2/3 of the way full and freeze it. Then I would wrap a hand towel around the bottle and cuddle with it at night to stay cooler. It helped a lot. I also would squeeze citrus into my water and add salt instead of buying electrolyte stuff if I was short on cash.
@@ChronicallyJenni Maybe our freezers are bigger here. I'm in the U.S. Most houses and apartments here have freezers you could fit several of those bottles in (if you don't have other stuff in there).
Luckily my AC broke at the end of the summer because we couldn’t afford to fix it. There was one summer where it didn’t work for a few days and I did stuff like this too. We also avoided cooking to avoid triggering POTS.
I wash my hair from a kneeling position from over the outside of the bathtub ….with head under the bath faucet…..as awkward as this can seem, I am already on the ground rather than standing and washing my hair without standing with my arms up. It also allows me a moment to settle and rise slowly Thank you so much for the video
I gave up on showers a long time ago. I do shallow ‘sitz’ baths, because if I immerse in warm water and get up even carefully after, it can precipitate palpitations/dizziness. I find it so easy to kneel under the faucet at the end of the bath to wash my hair..
Great video, I don't have POTS but I do have 3 autoimmune diseases and like chronic illness hack videos. A hack someone told me a long time ago (I get sea sick and was on a boat when someone told me this) but to put a cold pack on the crease of your arm. The other side if the elbow. Works for me when I'm hot.
Gin gins are so great! What I do is melt some in (decaf) tea because I find it easier to sip on something when I'm nauseous than to have something in my mouth. The gin gins taste amazing in a London fog latte, or chamomile, but it's good with many other teas
Thank you for this treasure trove of advice!! I’m very fortunate that my condition seems not too severe. I’ve learned that bolting around fast like I did for years as a courier, then later a barrista no longer works. No matter how the time is, I’m learning to move slowly and gracefully now. Reduces stress level and incidents of palpitations. Also crucial is the Breath. Making sure it’s always moving, in or out. I learned from Dr Berg about 10 breaths a minute as a good guideline, so a 5 count in snd same out, roughly. Sometimes if I’m chatting with someone I’ve had sudden dizziness, attacks and I realise I sometimes forget to inhale enough when I’m talking at length! Not good. And if I feel the slightest speeding up in the heart etc, I focus on those healing breaths. Thanks again Jenni! You’re.p a delight to watch and doing many a great service ❤
This is actually the most helpful thing ever. I really appreciate the time you took. The moving your feet when sitting before getting up is so helpful! It’s crazy because I was already doing this unintentionally but didn’t realize why it was so helpful!! It’s so nice to know you’re not alone. ❤️
Oh! I will look for the stand for the hair dryer! I also want to thank you for your shower chair tip. You spoke about it in a video a couple of years ago, and it finally convinced me to buy one. The BEST decision ever. It makes such a difference in my days. I should have done that years earlier. So thank you for speaking about it 'until you are blue in the face'. Some of us need to hear it multiple times, before we finally start taking care of ourselves.
So so helpful! I don’t have pots but my ME CFS gives me poor temperature regulation and I really struggle in the heat. Looking forward to trying some of these! Thanks Jenni
Im questioning if i have pots.. waiting on a diagnosis but im doing research in preparation just in case it does end up being pots so i find this video pretty helpful 😊
I am too! I didn't even think about POTS until I passed out and got a concussion (of course my neurologist blew it off as me being a teenager). My mom talked to her best friend (all three of her daughters have POTS), and she recommended talking to my doctor about my symptoms, so my mom talked to my doctor and she referred me to a specialist "without batting an eye" - according to my mom. Now I just have to get my dad to agree because he doesn't think I have POTS. Good luck to the both of you! ❤
I would like to express my extreme gratitude for your very helpful video. I appreciate all of your recommendations and you're calm demeanor in presentation. You are helping so many people by sharing this information. Much love thank you so much
This is great, Jenni. Thank you so much! xxxx By the way, coconut water is a great way to rebalance your electrolytes if you’re feeling wobbly. I have dysautonomia but not POTS and so I always have some in the fridge, just in case and take small cartons with me to my Silver Swans ballet class too.
Thanks Penny. Great tip. Where do you get your small cartons? I always end up wasting coconut water when I get it because I don't have it regularly enough.
Vitassium is also helpful for adrenal insufficiency. Some of us have salt wasting with AI. I use first aid ice packs on the go because they’re instantly cold without me having to wet it or have a freezer/cooler nearby
If you experience problems swallowing Caplets, put the caplet in your mouth, take a good sip of water but don't swallow yet, tilt your head forward and the caplet will go down much easier.
So glad you found it so helpful! haha love that, I'd definitely go for anything I said was a hero product first off and create a priority list, these are things I've picked up over five years, I wouldn't try to get them all at once haha :P
Hi; thank you so much for your informative video! I am wondering what you thought about the Embr Wave? Did it work for you and was it worth the money? I live in TX and it's soo hot here. But for $300 I'd love to hear how it worked for you before purchasing. Thank you!
I sometimes put a soft, thin towel in the freezer after lightly wetting it with water. I can grab it out of the freezer when I need it. Breathable compression calf sleeves also helps to reduce the severity of my POTS. I take nightly low-dose Guanfacine or Clonidine to prevent migraines and to reduce the severity of my POTS. Some people respond better to Atenolol or Propranolol instead as a migraine preventative and POTS medication, but I couldn't tolerate beta blockers.
Great tip, does that not melt all over you though? Yes Ive definitely got to try some calf sleeves on your reccomendation. Yeah I take a low dose beta blocker along with another medication for my POTS theyre the real life savers!
@@ChronicallyJenni Sometimes the wet is okay, but I often will take that frozen damp towel and stick it in a gallon size Ziploc bag, and then stick that into an old pillowcase to use. The calf sleeve brand I like best is 2xU. They make some thin knit ones that breathe easy for good ventilation, although I also like the softness of their mostly spandex sleeves. People with really bad ankle issues might have a bit of difficulties in getting calf sleeves on and off. The extra medication I take with my Clonidine/Guanfacine is Pyridostigmine - which treats both POTS and gastroparesis by stimulating the vagus nerve and parasympathetic nervous system (rest and digest functions).
And I though I was just weak! I help my mom when she dries my hair by holding some parts up when they’re in the way (she has to blow dry it otherwise it gets tangled), and I feel weak in 5 minutes top lol. I start overheating and breath hard too but I thought that, even if I’m not overweight, it was me being un athletic,.
see iv had dysanomia my entire life, i didnt even know it wasnt normal from the first true understanding of my body i have always had it. even as a baby i would sweat so much my mum though i had wet the bed. I a few yrs back when i was living with my dads increased my salt intake, by acident i didnt even know it at the time my dad just adds alot of salt to food, and oml my styptoms vanished. now guess who keeps little salt packets with him everywhere he goes incase he feels dizzy sick or light headed XD. Drs wont even consider i have a form of dysnnomia but thanks for the tips
I loved the stuff you showed, really interesting new things I'd not heard of. And I'm really happy to hear you give warning to some of the info that it's not good for everyone with PoTs, depending on type etc. I've given the video a well deserved thumbs up. My only disappointment is that the survival kit was only based on a certain type, without other alternatives mentioned for other PoTs people. Like I wish you'd have shown stuff for people who suffer from cold & not just heat. I know you were showing only that stuff because that's all you struggle with, but as your audience doesn't just have your type, it would be nice to include and support other PoTs sufferers also. Not asking you to buy stuff you don't need, but perhaps if you could have researched alternatives for us others. Anyway gave it a thumbs up anyway, even though I sadly can't take anything from it.
I've obviously not tried everything. If anyone reading these comments were to go for one of those which one would you recommend? I have heard of liquid iv and banana bag and I know people who absolutely swear by those but not heard of the other two. I think they're all quite USA based so aren't always readily available here in the UK (if you do know where to get them do let me know!). Personally I struggle with electrolyte drinks as I'm personally quite intolerant to refined sugar and lots of them have a high sugar content . I'd love to try banana bag because I don't think it has the same sugar problem but it's stupidly expensive to get over here. I've not been a huge fan of the taste of the electrolyte drinks I've tried and they haven't worked well enough for me to put up with that taste if that makes sense. xx
@@ChronicallyJenni I agree there is always too much sugar! I have heard of people creating their own electrolyte drinks in order to avoid sugar, but I don't have the time for that lol Taste wise liquid IV is the best. Banana Bag is worth the extra shipping costs for people that can afford it in my opinion for sure. It tastes the worst out of any drink I have tried (how I imagine goblin piss would taste LOL), but honestly when I do drink them I am already so miserable I don't care. They help me get on my feet on really bad days.
The hands free fan is AMAZING! I Worked as a PA for a lovely lady with Muscular Dystrophy and she was always freezing cold because of the lack of muscle mass so the heating was always on in her house and I was always getting her set up with heated blankets and hot water bottles etc and meanwhile I’d be overheating like crazy and I almost passed out on the daily from being unbearably hot 🥵 That fan absolutely SAVED ME and didn’t affect her at all as it was only directed on my face. Spraying water on my face with a spray bottle every so often really helped too as well as drinking a huge amount of water although I probably could have done with those electrolyte thingies as an extra boost if I’d known about them! I did have lucozade sport drinks sometimes which helped but probably isn’t as effective as those sachets
Thanks for the tips!! When I didn't have air conditioning or money to buy things, I would fill a 2-liter plastic bottle 2/3 of the way full and freeze it. Then I would wrap a hand towel around the bottle and cuddle with it at night to stay cooler. It helped a lot.
I also would squeeze citrus into my water and add salt instead of buying electrolyte stuff if I was short on cash.
How did you fit it in the freezer! love that. Interesting, I might give that a try! x
@@ChronicallyJenni Maybe our freezers are bigger here. I'm in the U.S. Most houses and apartments here have freezers you could fit several of those bottles in (if you don't have other stuff in there).
Luckily my AC broke at the end of the summer because we couldn’t afford to fix it. There was one summer where it didn’t work for a few days and I did stuff like this too. We also avoided cooking to avoid triggering POTS.
I wash my hair from a kneeling position from over the outside of the bathtub ….with head under the bath faucet…..as awkward as this can seem, I am already on the ground rather than standing and washing my hair without standing with my arms up. It also allows me a moment to settle and rise slowly
Thank you so much for the video
I gave up on showers a long time ago. I do shallow ‘sitz’ baths, because if I immerse in warm water and get up even carefully after, it can precipitate palpitations/dizziness. I find it so easy to kneel under the faucet at the end of the bath to wash my hair..
Great video, I don't have POTS but I do have 3 autoimmune diseases and like chronic illness hack videos. A hack someone told me a long time ago (I get sea sick and was on a boat when someone told me this) but to put a cold pack on the crease of your arm. The other side if the elbow. Works for me when I'm hot.
oooo will definitely give that a go thanks for the tip
Gin gins are so great! What I do is melt some in (decaf) tea because I find it easier to sip on something when I'm nauseous than to have something in my mouth. The gin gins taste amazing in a London fog latte, or chamomile, but it's good with many other teas
Thank you for this treasure trove of advice!! I’m very fortunate that my condition seems not too severe. I’ve learned that bolting around fast like I did for years as a courier, then later a barrista no longer works. No matter how the time is, I’m learning to move slowly and gracefully now. Reduces stress level and incidents of palpitations. Also crucial is the Breath. Making sure it’s always moving, in or out. I learned from Dr Berg about 10 breaths a minute as a good guideline, so a 5 count in snd same out, roughly. Sometimes if I’m chatting with someone I’ve had sudden dizziness, attacks and I realise I sometimes forget to inhale enough when I’m talking at length! Not good. And if I feel the slightest speeding up in the heart etc, I focus on those healing breaths. Thanks again Jenni! You’re.p a delight to watch and doing many a great service ❤
This is actually the most helpful thing ever. I really appreciate the time you took. The moving your feet when sitting before getting up is so helpful! It’s crazy because I was already doing this unintentionally but didn’t realize why it was so helpful!! It’s so nice to know you’re not alone. ❤️
Oh! I will look for the stand for the hair dryer! I also want to thank you for your shower chair tip. You spoke about it in a video a couple of years ago, and it finally convinced me to buy one. The BEST decision ever. It makes such a difference in my days. I should have done that years earlier. So thank you for speaking about it 'until you are blue in the face'. Some of us need to hear it multiple times, before we finally start taking care of ourselves.
So so helpful! I don’t have pots but my ME CFS gives me poor temperature regulation and I really struggle in the heat. Looking forward to trying some of these! Thanks Jenni
God bless! I've got diagnosed with pots a few days ago
Im questioning if i have pots.. waiting on a diagnosis but im doing research in preparation just in case it does end up being pots so i find this video pretty helpful 😊
Me too! Good luck on getting a diagnosis
@@EllasDiaryOfficial you to!😊
@@shalight5623 Thanks!
I am too! I didn't even think about POTS until I passed out and got a concussion (of course my neurologist blew it off as me being a teenager). My mom talked to her best friend (all three of her daughters have POTS), and she recommended talking to my doctor about my symptoms, so my mom talked to my doctor and she referred me to a specialist "without batting an eye" - according to my mom. Now I just have to get my dad to agree because he doesn't think I have POTS. Good luck to the both of you! ❤
Did you get it?
I would like to express my extreme gratitude for your very helpful video. I appreciate all of your recommendations and you're calm demeanor in presentation. You are helping so many people by sharing this information. Much love thank you so much
You're so welcome! sending all the love x
This is great, Jenni. Thank you so much! xxxx
By the way, coconut water is a great way to rebalance your electrolytes if you’re feeling wobbly. I have dysautonomia but not POTS and so I always have some in the fridge, just in case and take small cartons with me to my Silver Swans ballet class too.
Thanks Penny. Great tip. Where do you get your small cartons? I always end up wasting coconut water when I get it because I don't have it regularly enough.
@@ChronicallyJenni you can buy a case of 12 on Ocado, which is where I get mine from. I also have the full sized ones to use when Ikm at home xxxx
Vitassium is also helpful for adrenal insufficiency. Some of us have salt wasting with AI. I use first aid ice packs on the go because they’re instantly cold without me having to wet it or have a freezer/cooler nearby
This couldn't have come at a better time, thank youu! 💛
I'm so glad! Sending Spoons & Love your way!
Thank you so much . I wish I would have found this sooner.
If you experience problems swallowing Caplets, put the caplet in your mouth, take a good sip of water but don't swallow yet, tilt your head forward and the caplet will go down much easier.
A hairdryer stand!?!? Amazing, thanks!
Thankyou for making this video 💕 I’ve got a lot of things in my Amazon basket now 🙈
So glad you found it so helpful! haha love that, I'd definitely go for anything I said was a hero product first off and create a priority list, these are things I've picked up over five years, I wouldn't try to get them all at once haha :P
Hi; thank you so much for your informative video! I am wondering what you thought about the Embr Wave? Did it work for you and was it worth the money? I live in TX and it's soo hot here. But for $300 I'd love to hear how it worked for you before purchasing. Thank you!
I sometimes put a soft, thin towel in the freezer after lightly wetting it with water. I can grab it out of the freezer when I need it.
Breathable compression calf sleeves also helps to reduce the severity of my POTS.
I take nightly low-dose Guanfacine or Clonidine to prevent migraines and to reduce the severity of my POTS. Some people respond better to Atenolol or Propranolol instead as a migraine preventative and POTS medication, but I couldn't tolerate beta blockers.
Great tip, does that not melt all over you though? Yes Ive definitely got to try some calf sleeves on your reccomendation. Yeah I take a low dose beta blocker along with another medication for my POTS theyre the real life savers!
@@ChronicallyJenni Sometimes the wet is okay, but I often will take that frozen damp towel and stick it in a gallon size Ziploc bag, and then stick that into an old pillowcase to use.
The calf sleeve brand I like best is 2xU. They make some thin knit ones that breathe easy for good ventilation, although I also like the softness of their mostly spandex sleeves. People with really bad ankle issues might have a bit of difficulties in getting calf sleeves on and off.
The extra medication I take with my Clonidine/Guanfacine is Pyridostigmine - which treats both POTS and gastroparesis by stimulating the vagus nerve and parasympathetic nervous system (rest and digest functions).
I’m suspecting to have POTS. Thanks for the tips.
And I though I was just weak! I help my mom when she dries my hair by holding some parts up when they’re in the way (she has to blow dry it otherwise it gets tangled), and I feel weak in 5 minutes top lol. I start overheating and breath hard too but I thought that, even if I’m not overweight, it was me being un athletic,.
Very very helpful thank you so much
see iv had dysanomia my entire life, i didnt even know it wasnt normal from the first true understanding of my body i have always had it. even as a baby i would sweat so much my mum though i had wet the bed. I a few yrs back when i was living with my dads increased my salt intake, by acident i didnt even know it at the time my dad just adds alot of salt to food, and oml my styptoms vanished. now guess who keeps little salt packets with him everywhere he goes incase he feels dizzy sick or light headed XD. Drs wont even consider i have a form of dysnnomia but thanks for the tips
Great ideas look forward to more
Thanks so much!
I loved the stuff you showed, really interesting new things I'd not heard of.
And I'm really happy to hear you give warning to some of the info that it's not good for everyone with PoTs, depending on type etc.
I've given the video a well deserved thumbs up. My only disappointment is that the survival kit was only based on a certain type, without other alternatives mentioned for other PoTs people.
Like I wish you'd have shown stuff for people who suffer from cold & not just heat.
I know you were showing only that stuff because that's all you struggle with, but as your audience doesn't just have your type, it would be nice to include and support other PoTs sufferers also.
Not asking you to buy stuff you don't need, but perhaps if you could have researched alternatives for us others.
Anyway gave it a thumbs up anyway, even though I sadly can't take anything from it.
Do you not like liquid IV, banana bag oral solution, normalyte, biolyte, etc? That's what I thought of when you made a food and "drink" section lol
I've obviously not tried everything. If anyone reading these comments were to go for one of those which one would you recommend? I have heard of liquid iv and banana bag and I know people who absolutely swear by those but not heard of the other two. I think they're all quite USA based so aren't always readily available here in the UK (if you do know where to get them do let me know!). Personally I struggle with electrolyte drinks as I'm personally quite intolerant to refined sugar and lots of them have a high sugar content . I'd love to try banana bag because I don't think it has the same sugar problem but it's stupidly expensive to get over here. I've not been a huge fan of the taste of the electrolyte drinks I've tried and they haven't worked well enough for me to put up with that taste if that makes sense. xx
@@ChronicallyJenni I agree there is always too much sugar! I have heard of people creating their own electrolyte drinks in order to avoid sugar, but I don't have the time for that lol Taste wise liquid IV is the best. Banana Bag is worth the extra shipping costs for people that can afford it in my opinion for sure. It tastes the worst out of any drink I have tried (how I imagine goblin piss would taste LOL), but honestly when I do drink them I am already so miserable I don't care. They help me get on my feet on really bad days.
And thank you for making this video!