Skype! I have my computer and webcam set up so that it faces my bed. That way I can lay down and catch up with friends who I can't visit. And that way, too, if I get tired or short of breath I can motion and my friends know to wait. I don't feel as much pressure as I do with talking on the phone.
A wireless mouse helps with that, too. (you can even get them at the dollar store.)
I like powerade zero because is has no calories, carbs, and sugars (unlike the Gatorade equivalent) and contains sodium, so while I get the fluids I need, I'm also adding to my salt intake, meaning one less salt tablet. Two birds with one stone.
Walmart sells 1g salt tablets which help for those of us who have to consume SOO much sodium (especially if like me, you don't really like salt). It makes it easier to down the salt without eating lots of junk foods that you don't have the to "excercis
I don't know if I'm alone in this or not, but my POTS-like symptoms seem to be exacerbated by having an unsettled mental state, or anticipating the nasty symptoms I always seem to get from long walks (loss of hearing and a ring or buzz in my ears, numbness, disorientation, etc.) When I have to walk a greater distance than would normally be in my comfort zone, I try NOT to focus on the destination but look at my shoes or the ground directly in front of me instead. Sounds corny, but it works!
I keep water with me at all times, and I try to avoid the heat for dehydration purposes. I love playing cards with my family, because even if I am too tired to sit up, I can still lay down and play. My family has been really supportive of it all. Support definitely helps. My school also has been very understandable of this condition. I am grateful to that. Good luck to everyone with this condition. And hopefully soon, there will be a cure for it. =)
Don't feel guilty if you just need to rest. Try to go out with friends. Even though it is exhausting, it is better for your mental health. Always stay connected to people. If you can't go out, write an e-mail, or call people. You can not let your mental health slide. Drink plenty of water. Smart water is AWESOME. Also, if you drink fizzy water it hydrates you faster. Try to sleep slightly elevated on a sturdy pillow to "train" your body.
when I know I am going to be walking around a lot, I put on compression stockings. This is only if its in a climate controlled area, though, because if its hot and I wear them, they just make me more hot and faint. Exercise, but don't push yourself. I walk on the treadmill slightly faster than my normal walk and put it on a slight incline. If you shower/bath, let your feet soak in cool water for a while before getting out, it will constrict your blood vessels and keep you from passing out.
I avoid all stress basically. I moved home to live near the ER and it's made a lot of difference in terms of chronic chest pain.
I compromise my entire life so I can stay out of hospital by reducing anything that sets my pulse rate off (or anxiety). It's not nice to compromise, but it's the only way when you hav dysautonomia I've found.
E.g. living within the limitations you have with the illness.
Keep up the videos if you can, your channel is great! All the best.
Actually another tip might be this, though I need to take my own advice more:
Don't be afraid to make use of a wheelchair if going to museums or whatever is too much. I avoid all these places knowing how awful I'll soon feel. Yes, it feels uncomfortable looking like a healthy 23y.o. especially without getting to the bad point first, but really if it lets you enjoy an activity you'd miss...
Then again I rarely have the 'courage' to do so. I miss those trips.
I can't stand Gatorade or most other really sugary drinks, but I found one that I HIGHLY reccomend. It really seems to help me keep going, for the most part. It is Snapple's version of vitamin water, especially the Dragonfruit flavour.
If you're like me and don't like very sweet thigs or the yucky taste of fake suger then try it.
Other than that I am not sure I have any tips. Seems I haven't yet figured things out yet :/
(cont'd) close eye on blood sugar regulation, reclining wheelchair, motorized shopping carts, handicap parking sticker, refridge by bedside, calm VISUAL imagery while lying down (immediately relieves shortness of breath & has kept me out of ER numereous times), stay within your exertion limits w/delayed effects in mind, and most important, COMPRESSION garments (e.g. 30mmHg thigh high stockings, liposuction garments. abdominal wraps) worn 24hrs/day.
Smart Water! Carry it with you at all times! Listen to your body. When you don't have the energy then rest. Overdoing it will only put you in the hospital. Don't be afraid to mention to your doctors if your medication isn't working or isn't helping any longer. They can't help if they don't know. Salt Tablets help get in the extra salt that is often hard to get in via everyday foods and can be picked up at almost any pharmacy. Hope these help! -Krista :)
G2 the new Gateraide is great for hydration without all the sugar, an oatmeal bag you heat up in the microwave and place on forehead for headaches or a basic eye mask, shower chair is a lifesaver :), stay out of the direct sun, vicks nasal inhaler for when allergy like symptoms arise gets rid of it immediately, M&M's Meats are great for preprepared good for you food, that you just have to pop in the oven instead of having to stand too long preparing everything, and that's it for now hehe ttyl!!!
Each time before I stand up, I clench the muscles in my calves a number of times....it helps the blood flow more evenly and prevents the sudden rush of blood to the legs once you stand! I also do this if I'm having to stand for a little longer than I should!
The yummiest tip I have is to carry salted peanuts with you and nibble on them all day!! an increase of salt in the diet is a proven way of helping to treat your POTS so it's something Ive been doing since I was diagnosed!
Skype! I have my computer and webcam set up so that it faces my bed. That way I can lay down and catch up with friends who I can't visit. And that way, too, if I get tired or short of breath I can motion and my friends know to wait. I don't feel as much pressure as I do with talking on the phone.
A wireless mouse helps with that, too. (you can even get them at the dollar store.)
KenziBee 1 year ago
I like powerade zero because is has no calories, carbs, and sugars (unlike the Gatorade equivalent) and contains sodium, so while I get the fluids I need, I'm also adding to my salt intake, meaning one less salt tablet. Two birds with one stone.
Walmart sells 1g salt tablets which help for those of us who have to consume SOO much sodium (especially if like me, you don't really like salt). It makes it easier to down the salt without eating lots of junk foods that you don't have the to "excercis
KenziBee 1 year ago
I don't know if I'm alone in this or not, but my POTS-like symptoms seem to be exacerbated by having an unsettled mental state, or anticipating the nasty symptoms I always seem to get from long walks (loss of hearing and a ring or buzz in my ears, numbness, disorientation, etc.) When I have to walk a greater distance than would normally be in my comfort zone, I try NOT to focus on the destination but look at my shoes or the ground directly in front of me instead. Sounds corny, but it works!
RationalDischarge 1 year ago
I like drinnking gatorade because it tastes better than water,and it helps me stay hydrated.
SashaFruitloop 2 years ago
I keep water with me at all times, and I try to avoid the heat for dehydration purposes. I love playing cards with my family, because even if I am too tired to sit up, I can still lay down and play. My family has been really supportive of it all. Support definitely helps. My school also has been very understandable of this condition. I am grateful to that. Good luck to everyone with this condition. And hopefully soon, there will be a cure for it. =)
forgivethehated 2 years ago
finally, don't eat large meals; it lowers your BP. Instead, eat more frequent light meals.
artsystacey 2 years ago
Don't feel guilty if you just need to rest. Try to go out with friends. Even though it is exhausting, it is better for your mental health. Always stay connected to people. If you can't go out, write an e-mail, or call people. You can not let your mental health slide. Drink plenty of water. Smart water is AWESOME. Also, if you drink fizzy water it hydrates you faster. Try to sleep slightly elevated on a sturdy pillow to "train" your body.
artsystacey 2 years ago
when I know I am going to be walking around a lot, I put on compression stockings. This is only if its in a climate controlled area, though, because if its hot and I wear them, they just make me more hot and faint. Exercise, but don't push yourself. I walk on the treadmill slightly faster than my normal walk and put it on a slight incline. If you shower/bath, let your feet soak in cool water for a while before getting out, it will constrict your blood vessels and keep you from passing out.
artsystacey 2 years ago
I avoid all stress basically. I moved home to live near the ER and it's made a lot of difference in terms of chronic chest pain.
I compromise my entire life so I can stay out of hospital by reducing anything that sets my pulse rate off (or anxiety). It's not nice to compromise, but it's the only way when you hav dysautonomia I've found.
E.g. living within the limitations you have with the illness.
Keep up the videos if you can, your channel is great! All the best.
eurotrancemixes 2 years ago
Smart Water - Electrolytes with zero calories
gina2westies 2 years ago
I ran out of comment room...
Actually another tip might be this, though I need to take my own advice more:
Don't be afraid to make use of a wheelchair if going to museums or whatever is too much. I avoid all these places knowing how awful I'll soon feel. Yes, it feels uncomfortable looking like a healthy 23y.o. especially without getting to the bad point first, but really if it lets you enjoy an activity you'd miss...
Then again I rarely have the 'courage' to do so. I miss those trips.
albanybcn 2 years ago
I can't stand Gatorade or most other really sugary drinks, but I found one that I HIGHLY reccomend. It really seems to help me keep going, for the most part. It is Snapple's version of vitamin water, especially the Dragonfruit flavour.
If you're like me and don't like very sweet thigs or the yucky taste of fake suger then try it.
Other than that I am not sure I have any tips. Seems I haven't yet figured things out yet :/
I second the V8 too!
albanybcn 2 years ago
when i began with the simptoms i started with reiki and accupunture sesions, they really do work and give you more energy.
azulamarillo1 2 years ago
to name a few:
Salt, salt & more salt
Gatorade
V8 or tomato juice
sit frequently
don't overdue yourself
Lots of water
stay out of heat
ywa1t 2 years ago
(cont'd) close eye on blood sugar regulation, reclining wheelchair, motorized shopping carts, handicap parking sticker, refridge by bedside, calm VISUAL imagery while lying down (immediately relieves shortness of breath & has kept me out of ER numereous times), stay within your exertion limits w/delayed effects in mind, and most important, COMPRESSION garments (e.g. 30mmHg thigh high stockings, liposuction garments. abdominal wraps) worn 24hrs/day.
Heatherstl1 2 years ago
Great tips, guys!! I'm really excited to put this video together:)
chronicallykyli 2 years ago
Smart Water! Carry it with you at all times! Listen to your body. When you don't have the energy then rest. Overdoing it will only put you in the hospital. Don't be afraid to mention to your doctors if your medication isn't working or isn't helping any longer. They can't help if they don't know. Salt Tablets help get in the extra salt that is often hard to get in via everyday foods and can be picked up at almost any pharmacy. Hope these help! -Krista :)
crazygal77 2 years ago
G2 the new Gateraide is great for hydration without all the sugar, an oatmeal bag you heat up in the microwave and place on forehead for headaches or a basic eye mask, shower chair is a lifesaver :), stay out of the direct sun, vicks nasal inhaler for when allergy like symptoms arise gets rid of it immediately, M&M's Meats are great for preprepared good for you food, that you just have to pop in the oven instead of having to stand too long preparing everything, and that's it for now hehe ttyl!!!
ashpauls 2 years ago
Hi Kyli!
Each time before I stand up, I clench the muscles in my calves a number of times....it helps the blood flow more evenly and prevents the sudden rush of blood to the legs once you stand! I also do this if I'm having to stand for a little longer than I should!
niamhyweaveypuddin 2 years ago
ps....
The yummiest tip I have is to carry salted peanuts with you and nibble on them all day!! an increase of salt in the diet is a proven way of helping to treat your POTS so it's something Ive been doing since I was diagnosed!
Hope you're keeping well...:) x Niamh
niamhyweaveypuddin 2 years ago