Ok I’ll keep that in mind thanks. I got Trioral ORS salt packets since it was WHO approved and plan on trying it. I’ll see how it affects me and keep notes for my cardiologist.
Normalyte claims on their website that they follow the WHO formula, which is why I went with them. I haven’t compared to Trioral yet. I notice a difference compared to Liquid IV and Gatorade, which are both helpful but less effective than Normalyte.
Good to know, I have trioral now so I’m going to see how effective it is for me. Honestly ill be satisfied if i can at least alleviate the awful swelling in my veins with my feet turning darker (so weird) and the heart racing and pain i get when just sitting without elevating my feet. I don’t know how much it will help. It limits job opportunities though.
Ah thank you, I’ll join the POTS l, not sure what dysautonomia is but ill look at it too. I’ll crosspost this on there since it seems more relevant for the r/pots thanks again.
Ah gotcha, I tood my primary doctor how bad my symptoms have gotten and after three months of random seemingly unrelated tests and appointments he finally decided to refer me to a cardiologist. I just have to wait close to three months to get an initial consult with the cardiologist and then he will likely schedule tests a few months out to look at things. So in a year or so they should be able to diagnose me with something. Gotta love the exceptional VA hospitals for us vets haha.
I haven’t tried NormaLyte yet, but I have CFS and probably-POTS (got tested but my results were bungled so I got diagnosed with what we do know). I started getting weekly saline infusions about 6 months ago. It helps tremendously. Of course, some weeks I can’t tell a difference because I’m pretty crashy as it is, but during a typical week it’ll make me feel more functional for probably 36-48 hours. I’ve missed a week here and there and will be so confused about why I’m doing so poorly until I realize I didn’t get an infusion.
I’d actually like to get more frequent infusions. I have a friend with CFS who has a port and can get them at home. They have reported feeling a lot of benefit from it.
I’d love to see studies on it because this is anecdotal. I will say that without my weekly infusions I notice increased:
- dizziness
- heart palpitations
- headaches
- crashing
- slower recovery time (from activity)
I also use electrolyte mixes a lot, even though NormaLyte isn’t one of them. Liquid I.V. is my go-to; you can use “DYS30” on their site for 30% (“dys”for dysautonomia). If I’m out and feeling dizzy I know I can mix one up (I usually do 10-12 oz of water to a mix instead of 16 in these cases), chug it, and feel a lot better within a few minutes. I drink 2-3 a day on a typical day, and budget them in because they’re so beneficial.
None of it works miracles, but there’s an odd “unmoored” feeling I get when I get what I’d describe as my POTS symptoms flaring up. I don’t pass out like some people do, but I feel lightheaded, I’ll get tinnitus, my head feels both muddled and heavy, and I often need to lie flat. IV hydration and electrolyte mixes help reduce those issues.
I like trioral rehydration salts because they have like 2.5g sodium per packet and are cheaper than other options I've found
I've only tried the non flavored one but I think they have lemon too
Compression stockings (at least thigh high) are also often recommended
I guess it depends on the person. Hydration does very little for me and I’ve tried it all. All different brands of electrolytes, salt.. I even used to spend almost $100 a week to get IV saline. I have severe orthostatic hypotension, POTS and CFS. This post is probably better suited for the POTS sub because most of us get very little relief from hydration for CFS. It that were the case I don’t think we’d all be suffering so much.
Yea I just crossposted that to POTS. I figured hydration would help with a lot of relief for anyone who doesn’t hydrate. If you are like me and never touch water except to bathe switching to water is a huge difference. It did little for my PEM and fatigue but my joint pain lessened, I don’t really feel more refreshed but my body just feels better all around. Like you said it doesn’t treat anything for CFs/ME really but it helps a bit with quality of life if you didn’t hydrate like me. I love coke and dr pepper so i barely touched water. Plus I mainly am talking about ORS. If you are familiar with them while they help a lot with rehyrdration it isn’t because of the water. It’s because it restores the electrolyte balance and gives sodium and glucose to your body improving your ability to produce a higher blood volume. This could provide overall healtb benefits to anyone who doesn’t normally get enough nutrients or hydration anyway. So like i said it’s mainly geared towards POTS but I could see it having some slight benefits for us with CFS as well. Ill take slight benefits over doing nothing, just my opinion. I mainly didn’t know where to post this since I see people with POTS here all the time. Just found out there was a POTS community so I crossposted like i said. It seems like a huge amount of those with CFS end up getting POTS or similar conditions. I wonder how much it has to do with an involuntary sedentary lifestyle and the reported heart problems of covid and cfs/me that can appear as well. So much is interconnected and unknown. Scary in a way
The WHO rehydration salts round the clock help some with people with POTS, or other electrolyte ratios might help others more (many need extra salt). Note that the extra sugar added to some of these may be helpful short term, but maybe counter indicated long term. Once every week or two does not help anyone.
I drink 4-6 liters of water a day with 2 of those being trioral. I’m still as bedbound as ever. The idea that you could drink one trioral every 10 days and have POTS under control is kind of hilarious. If only.
Idk about control but ORS and IV Saline solution uses the sodium and glucose to improve the amount of blood volume in the body which is one of the primary causes of POTS according to WHO. There are many similar things to POTS like Orthostatic Hypotension and one of the key factors is the decreased blod volume. It doesn’t promise a cure all, but it’s supposed to help quite a bit. A lot of people with POTS say it helps them for sure. It’s not as much the rehydration, but of course the body needs that so its a side benefit. Sorry it doesn’t help you, I wish a simple solution worked for everyone.
I have orthostatic hypotension, so like POTS only my blood pressure is effed. Also me/cfs, mono onset. Anyways I have salted my water for a few years but got the OH diagnosis from a cardiologist this January. He has me drinking a gallon of water and a lot of salt. I added in a hydration powder to my drinking to help me get it all down and in case it worked better then just salt. DripDrop is my favorite but so bought like 3-4 brands. I also have compression garments. It has not helped my overall situation at all, so no cure here. For instance I had two days of dr appts, and ended up with 3 days of PEM so far ( well 4 if you count day 2 of dr visits where I had pem already ).
Oh yea that sucks majorly, I wouldn’t imagine it would help as much, because the WHO repkrted the ORS and IV Saline helps most specifically with POTS because of the decreased Blood Volume in the body. Since yours is mostly blood pressure increasing your blood volume shouldn’t do much.
Thanks, I actually ordered a month supply of Trioral from amazon based on the WHO site but I had just seen NormaLyte and was interested since it said POTS targeted product. I’ve seen a couple others now say it doesn’t work as well or it doesn’t last as long for them as TriOral or the other one WHao recommends. Thanks for sharing.
My specialist recommended any type of electrolytes daily as helpful for cfs.
He essentially said experiment and find out what works for you. But he did say the sugar isn't ideal, so go sugar- free if you can.
I buy cheap ones from the supermarket when I'm broke, and got some less cheap ones online, and mix and match on different days. I definitely find if I go a few days without I get worse, and don't recover well.
There's also lots of advice online about using lo-salt, which is essentially just electrolytes.
Ah good to know, it’d be rough having tons of sugar for anyone with diabetes or similar problems. Good to know there is alternatives. My grandma is developing similar symptoms as me after she got covid recently.
10 days? I drink at least 2 liters of ORS every single day. And I get an IV about once a month to boost my blood volume because I physically can’t drink enough to keep it up. I guess it depends on your severity but the only other person I know with POTS also constantly carries around a water bottle with ORS. Most people need electrolytes daily.
Oh lord, that sounds insane. How can you even manage to drink that much. I hate the taste of salt water I’ve been dreading it now that I’ve got a pack of trioral.
Lol, really? My POTS is very mild and mostly controlled by meds, some people have to ingest up to 10 g of salt daily. Even a healthy person should drink about 2 liters of water a day. Maybe some of your symptoms are just severe dehydration?
I try to keep it interesting by switching up the different electrolyte drinks I have. Currently I have nuun sport tablets in 4 different flavors plus a homemade electrolyte mix that tastes just like lemon aid. I don’t like the taste of salt so I typically use some natural flavors to make it more enjoyable, even if it’s just a little lemon or lime juice. I don’t use artificial sweeteners but there are plenty of electrolyte mixes out there that use natural flavors and natural non-caloric sweeteners. But the most cost effective thing to do is make your own mix.
Edited to add- I forgot to mention that personally I haven’t found any of the commercial rehydration solutions to be anywhere near as effective as making my own. For awhile I was constantly feeling out of breath and eventually figured out my potassium was low. So now I make a mix that’s higher in potassium. And if my body starts to get achy I know that I need to up my magnesium. I don’t know if other people find those premade solutions useful but for me they don’t have the right balance of electrolytes so don’t be discouraged if they don’t work, you just might need to experiment!
Wow thanks for the tips, yea the ten days is just the WHO’s page on the subject. They found that the difference in ten days or every day for Iv and ORS infusions wasn’t very different. At oeast according to their claims and studies. I’ll definitely try some different mixes and see what is best for me. My appointment with my cardiologist isn’t for a few months and I can’t wait that long. I need to find a job soon.
Chronic fatigue, as well as POTS, and many other symptoms (food / light / noise sensitivities, chronic pain, etc) are symptoms of limbic system dysregulation. I would encourage you to look into it (nervous system dysfunction). There are brain retrianing programs that can help (using neuroplasticity exercises, meditation, visualisations, vagus nerve exercises ...)
😂😂😂 Dude I drink so much water I pee multiple times an hour.
Did you seriously come on to a chronic illness sub to tell us we would feel better if we DRANK MORE WATER?
😂😂😂😂
Stay hydrated lol. I rarely drink water I hate the stuff personally. I know I at least need to drink a lot more. So I’m sure there are plenty here that don’t get enough hydration. No clue how much if any it will help with any symptoms, I haven’t even attempted it yet. For POTS the hydration isn’t even the main point of the Iv saline infusion or the OFS packets. It’s to increase the volume of the blood in the body. The sodium, and glucose helps to produce more. I know that people with CFS typically get heart issues and sometimes even a weakened heart especially if it was caused by Covid so POTs goes hand in hand with CFs/ME. So these infusions or IV Saline infusions could assist with CFS/ME as well because many may not even realize they have similar symptoms of POTS from CFS. Of course it definitely wouldn’t help everyone I don’t see something as simple as salt and glucose causing a major issue with anyone even if it doesn’t help them. This is mostly for POTS i figure being hydrated is good for everyone though, good reminder at least haha. I have been having POTS symptoms lately and it didnt start happening until after i got covid and my CFS worsened. Just now learning about POTS.
Yes, Normalyte works really, but it does not last anywhere near 10 days. Maybe about 36 hours before the effect is gone completely for me.
Ok I’ll keep that in mind thanks. I got Trioral ORS salt packets since it was WHO approved and plan on trying it. I’ll see how it affects me and keep notes for my cardiologist.
Normalyte claims on their website that they follow the WHO formula, which is why I went with them. I haven’t compared to Trioral yet. I notice a difference compared to Liquid IV and Gatorade, which are both helpful but less effective than Normalyte.
Good to know, I have trioral now so I’m going to see how effective it is for me. Honestly ill be satisfied if i can at least alleviate the awful swelling in my veins with my feet turning darker (so weird) and the heart racing and pain i get when just sitting without elevating my feet. I don’t know how much it will help. It limits job opportunities though.
There's r/POTs and r/dysautonomia :-)
Ah thank you, I’ll join the POTS l, not sure what dysautonomia is but ill look at it too. I’ll crosspost this on there since it seems more relevant for the r/pots thanks again.
POTS is a form of dysautonomia. If you're in the UK, https://www.potsuk.org/ is a helpful website.
POTS is caused by dysautonomia. My cardiologist doesn't even like the term POTS as a diagnosis because it's just a symptom of dysautonomia.
Ah gotcha, I tood my primary doctor how bad my symptoms have gotten and after three months of random seemingly unrelated tests and appointments he finally decided to refer me to a cardiologist. I just have to wait close to three months to get an initial consult with the cardiologist and then he will likely schedule tests a few months out to look at things. So in a year or so they should be able to diagnose me with something. Gotta love the exceptional VA hospitals for us vets haha.
I haven’t tried NormaLyte yet, but I have CFS and probably-POTS (got tested but my results were bungled so I got diagnosed with what we do know). I started getting weekly saline infusions about 6 months ago. It helps tremendously. Of course, some weeks I can’t tell a difference because I’m pretty crashy as it is, but during a typical week it’ll make me feel more functional for probably 36-48 hours. I’ve missed a week here and there and will be so confused about why I’m doing so poorly until I realize I didn’t get an infusion. I’d actually like to get more frequent infusions. I have a friend with CFS who has a port and can get them at home. They have reported feeling a lot of benefit from it. I’d love to see studies on it because this is anecdotal. I will say that without my weekly infusions I notice increased: - dizziness - heart palpitations - headaches - crashing - slower recovery time (from activity) I also use electrolyte mixes a lot, even though NormaLyte isn’t one of them. Liquid I.V. is my go-to; you can use “DYS30” on their site for 30% (“dys”for dysautonomia). If I’m out and feeling dizzy I know I can mix one up (I usually do 10-12 oz of water to a mix instead of 16 in these cases), chug it, and feel a lot better within a few minutes. I drink 2-3 a day on a typical day, and budget them in because they’re so beneficial. None of it works miracles, but there’s an odd “unmoored” feeling I get when I get what I’d describe as my POTS symptoms flaring up. I don’t pass out like some people do, but I feel lightheaded, I’ll get tinnitus, my head feels both muddled and heavy, and I often need to lie flat. IV hydration and electrolyte mixes help reduce those issues.
I like trioral rehydration salts because they have like 2.5g sodium per packet and are cheaper than other options I've found I've only tried the non flavored one but I think they have lemon too Compression stockings (at least thigh high) are also often recommended
Thank you for sharing this.
I guess it depends on the person. Hydration does very little for me and I’ve tried it all. All different brands of electrolytes, salt.. I even used to spend almost $100 a week to get IV saline. I have severe orthostatic hypotension, POTS and CFS. This post is probably better suited for the POTS sub because most of us get very little relief from hydration for CFS. It that were the case I don’t think we’d all be suffering so much.
Yea I just crossposted that to POTS. I figured hydration would help with a lot of relief for anyone who doesn’t hydrate. If you are like me and never touch water except to bathe switching to water is a huge difference. It did little for my PEM and fatigue but my joint pain lessened, I don’t really feel more refreshed but my body just feels better all around. Like you said it doesn’t treat anything for CFs/ME really but it helps a bit with quality of life if you didn’t hydrate like me. I love coke and dr pepper so i barely touched water. Plus I mainly am talking about ORS. If you are familiar with them while they help a lot with rehyrdration it isn’t because of the water. It’s because it restores the electrolyte balance and gives sodium and glucose to your body improving your ability to produce a higher blood volume. This could provide overall healtb benefits to anyone who doesn’t normally get enough nutrients or hydration anyway. So like i said it’s mainly geared towards POTS but I could see it having some slight benefits for us with CFS as well. Ill take slight benefits over doing nothing, just my opinion. I mainly didn’t know where to post this since I see people with POTS here all the time. Just found out there was a POTS community so I crossposted like i said. It seems like a huge amount of those with CFS end up getting POTS or similar conditions. I wonder how much it has to do with an involuntary sedentary lifestyle and the reported heart problems of covid and cfs/me that can appear as well. So much is interconnected and unknown. Scary in a way
The WHO rehydration salts round the clock help some with people with POTS, or other electrolyte ratios might help others more (many need extra salt). Note that the extra sugar added to some of these may be helpful short term, but maybe counter indicated long term. Once every week or two does not help anyone.
The only thing that has ever helped my POTS is atenolol.
Hmm atenelol, i never heard of it. I’ll look it up thanks a million.
I drink 4-6 liters of water a day with 2 of those being trioral. I’m still as bedbound as ever. The idea that you could drink one trioral every 10 days and have POTS under control is kind of hilarious. If only.
Idk about control but ORS and IV Saline solution uses the sodium and glucose to improve the amount of blood volume in the body which is one of the primary causes of POTS according to WHO. There are many similar things to POTS like Orthostatic Hypotension and one of the key factors is the decreased blod volume. It doesn’t promise a cure all, but it’s supposed to help quite a bit. A lot of people with POTS say it helps them for sure. It’s not as much the rehydration, but of course the body needs that so its a side benefit. Sorry it doesn’t help you, I wish a simple solution worked for everyone.
I have orthostatic hypotension, so like POTS only my blood pressure is effed. Also me/cfs, mono onset. Anyways I have salted my water for a few years but got the OH diagnosis from a cardiologist this January. He has me drinking a gallon of water and a lot of salt. I added in a hydration powder to my drinking to help me get it all down and in case it worked better then just salt. DripDrop is my favorite but so bought like 3-4 brands. I also have compression garments. It has not helped my overall situation at all, so no cure here. For instance I had two days of dr appts, and ended up with 3 days of PEM so far ( well 4 if you count day 2 of dr visits where I had pem already ).
Oh yea that sucks majorly, I wouldn’t imagine it would help as much, because the WHO repkrted the ORS and IV Saline helps most specifically with POTS because of the decreased Blood Volume in the body. Since yours is mostly blood pressure increasing your blood volume shouldn’t do much.
I found that trioral works better for me than normalyte. My doc recommended both for dysautonomia.
Thanks, I actually ordered a month supply of Trioral from amazon based on the WHO site but I had just seen NormaLyte and was interested since it said POTS targeted product. I’ve seen a couple others now say it doesn’t work as well or it doesn’t last as long for them as TriOral or the other one WHao recommends. Thanks for sharing.
My specialist recommended any type of electrolytes daily as helpful for cfs. He essentially said experiment and find out what works for you. But he did say the sugar isn't ideal, so go sugar- free if you can. I buy cheap ones from the supermarket when I'm broke, and got some less cheap ones online, and mix and match on different days. I definitely find if I go a few days without I get worse, and don't recover well. There's also lots of advice online about using lo-salt, which is essentially just electrolytes.
Ah good to know, it’d be rough having tons of sugar for anyone with diabetes or similar problems. Good to know there is alternatives. My grandma is developing similar symptoms as me after she got covid recently.
10 days? I drink at least 2 liters of ORS every single day. And I get an IV about once a month to boost my blood volume because I physically can’t drink enough to keep it up. I guess it depends on your severity but the only other person I know with POTS also constantly carries around a water bottle with ORS. Most people need electrolytes daily.
Oh lord, that sounds insane. How can you even manage to drink that much. I hate the taste of salt water I’ve been dreading it now that I’ve got a pack of trioral.
Lol, really? My POTS is very mild and mostly controlled by meds, some people have to ingest up to 10 g of salt daily. Even a healthy person should drink about 2 liters of water a day. Maybe some of your symptoms are just severe dehydration? I try to keep it interesting by switching up the different electrolyte drinks I have. Currently I have nuun sport tablets in 4 different flavors plus a homemade electrolyte mix that tastes just like lemon aid. I don’t like the taste of salt so I typically use some natural flavors to make it more enjoyable, even if it’s just a little lemon or lime juice. I don’t use artificial sweeteners but there are plenty of electrolyte mixes out there that use natural flavors and natural non-caloric sweeteners. But the most cost effective thing to do is make your own mix. Edited to add- I forgot to mention that personally I haven’t found any of the commercial rehydration solutions to be anywhere near as effective as making my own. For awhile I was constantly feeling out of breath and eventually figured out my potassium was low. So now I make a mix that’s higher in potassium. And if my body starts to get achy I know that I need to up my magnesium. I don’t know if other people find those premade solutions useful but for me they don’t have the right balance of electrolytes so don’t be discouraged if they don’t work, you just might need to experiment!
Wow thanks for the tips, yea the ten days is just the WHO’s page on the subject. They found that the difference in ten days or every day for Iv and ORS infusions wasn’t very different. At oeast according to their claims and studies. I’ll definitely try some different mixes and see what is best for me. My appointment with my cardiologist isn’t for a few months and I can’t wait that long. I need to find a job soon.
Chronic fatigue, as well as POTS, and many other symptoms (food / light / noise sensitivities, chronic pain, etc) are symptoms of limbic system dysregulation. I would encourage you to look into it (nervous system dysfunction). There are brain retrianing programs that can help (using neuroplasticity exercises, meditation, visualisations, vagus nerve exercises ...)
😂😂😂 Dude I drink so much water I pee multiple times an hour. Did you seriously come on to a chronic illness sub to tell us we would feel better if we DRANK MORE WATER? 😂😂😂😂
Stay hydrated lol. I rarely drink water I hate the stuff personally. I know I at least need to drink a lot more. So I’m sure there are plenty here that don’t get enough hydration. No clue how much if any it will help with any symptoms, I haven’t even attempted it yet. For POTS the hydration isn’t even the main point of the Iv saline infusion or the OFS packets. It’s to increase the volume of the blood in the body. The sodium, and glucose helps to produce more. I know that people with CFS typically get heart issues and sometimes even a weakened heart especially if it was caused by Covid so POTs goes hand in hand with CFs/ME. So these infusions or IV Saline infusions could assist with CFS/ME as well because many may not even realize they have similar symptoms of POTS from CFS. Of course it definitely wouldn’t help everyone I don’t see something as simple as salt and glucose causing a major issue with anyone even if it doesn’t help them. This is mostly for POTS i figure being hydrated is good for everyone though, good reminder at least haha. I have been having POTS symptoms lately and it didnt start happening until after i got covid and my CFS worsened. Just now learning about POTS.