I'm a potsy and EDS priest. I suffer also MCAS (mast cell activation syndrome). I do all the things that you say. One more tip that works for me is to do some soft exercise like walk, makes me feel much better but I have to say that sometimes is very difficult because of the fatigue. My blessing for all zebras and potsies, let's offer to the Sacred Heart of Jesus all ours sufferings!
Your video was suggested to me after looking into mold and autoimmune diseases. I don't have any major autoimmune diseases but my daughter is covered head to toe in eczema. And her and I are both always low in magnesium. Anyways I guess about 25% of the population can't detox mold properly and about 50%- 80% homes have water damage. I don't know if this information could help anyone but I felt compelled to share it not even sure if it's exactly my families issue either. Pray that everyone can find healing.
I figured out that when I was hydrating obsessively in the summer, I was actually flushing OUT too many electrolytes and making myself worse. This is why people die from drinking too much water. Now that I am adding them to my water, it really helps. I use BUoY because it doesn't have additives.
I'm not a lady, but I really appreciate your openness about your health. I heard you on Pints and your story encouraged me to start taking my symptoms seriously (still don't know what they are though) Electrolytes and compression socks are game-changers for sure though. I'd recommend them for anyone who's getting fatigued easily
I don’t have pots but I do have other chronic health issues and I appreciate when you share about the daily struggles. It is helpful to hear others talk about all thing symptoms and struggles that we have to overcome (and don’t always talk about) everyday. ❤
Wow I am so fascinated by this discussion! I "get potsy" during my pregnancies and it took me until this current (5th) pregnancy to get it mostly under control. No midwife or medical professional has been able to help me it's all been trial and error. I didn't have some of the language that you used until this episode-- I just knew that I had lower blood pressure and felt dizzy because of it. When I heard you talk about feeling awful during mass I freaked out! I often feel my worse at mass and actually felt guilty about this (feeling a lack of desire to go, occasionally needing to leave early, not being able to pay attention but just trying to not pass out). This makes a lot of sense though, and I do have other autoimmune diseases so not a big surprise. LMNT and general salt intake has been the biggest difference in the way I feel this pregnancy. I am SO grateful for it. I use compression socks for travel but I'm going to start to utilize them more now-- especially at mass. Looking forward to looking into some of the other tips as well. God bless you!
I have never been diagnosed but definitely experience POTS symptoms often. Mass can be SO hard with all of the quick ups and downs! A couple months ago I found a suggestion online to take salt baths for mineral absorption. Instead of epsom salts though, the recommendation was for a combination of dead sea salts (Minerva brand is good), pink Himalayan salt, and potassium bicarbonate powder- 1-2 cups dead sea salts 1 cup Himalayan salt 1/2 cup potassium bicarbonate When I’ve done them regularly I’ve found them to be really helpful! Too much magnesium can deplete sodium and potassium, so I like this combo better 🙂 You can do 1/2 or 1/4 the amounts for a foot soak instead too!
I developed mild POTS after my first pregnancy in 2018. I had my second in 2021 and my third in 2022. Each time it got worse, and during my third pregnancy it was debilitating. I didn't know what POTS was so I thought it was just low blood pressure, as did my midwives. I find nettle leaf tea to be hugely helpful! It has properties that help equalize blood pressure and it's also really mineral rich. I had a HTMA test done early this year and it showed I was completely depleted of sodium, like zero reserves, and also low on potassium and magnesium. Since then, I've started liberally using Celtic Sea salt for cooking, I do Epsom salt baths at home, and I supplement with 1-2 LMNT packs a day and trace mineral drops. I'm a completely different person now! I still have trouble on stressful days (sodium is the first mineral depleted during stress) and will add back in my nettles tea. I also had a GI analysis done and it showed I had low good gut bacteria, which can inhibit mineral absorption. So I started making my own fermented foods, which bonus points are also salty, and my gut health is way way better. I'm sure my body is absorbing more minerals than it was before.
I think for most people with EDS. All the comorbidities can actually be mitochondria malfunction. Likely due to severe nutritional deficiencies. Sometimes it's truly just autonomic. But for me it's mitochondria malfunction as well as histamine overload from chronic infections. I've overcome my symptoms by killing infections and balancing B-vitamins. But that can be really hard. I used Gail Clayton MD for organic acids testing. To explain this simply. The mitochondria are the cellular gate keepers of electrolytes. When they aren't functioning properly, you essentially need to have to have a constant intake of electrolytes because you dump in through the kidneys because it can't get into the cell. Getting rid of infections lowers your histamine burden. I've overcome most of not probably all of my EDS symptoms through killing infections, and balancing B-vitamins.
I too have had POTS. It developed after I competed in a long distance race in Hawaii, I was severely dehydrated and also had an allergic reaction to a sports gel. ( I am allergic to anything derived from corn). I ended up in the ER and since then have had major vertigo, dizziness, nausea when getting up, etc. I could no longer climb ladders, go on swings or anything that moved. Even swimming made me dizzy. I too need lots of salt and cannot have sugar. Recently I have gone on a full carnivore diet. Only animal protein, fats and water, plus salt. It’s amazing how much improvement I have had. I’m not back 100% but it’s a huge improvement in a short time. I also use the LMNT but only the unflavored. Stevia doesn’t like me. Also citric acid, natural flavors are all corn based ingredients. They give me massive headaches. Also I added4 drops ofLugols iodine 5% in the morning in a shot of water. This gets rid of headaches and helps with hormone function. The epsom salt baths sound amazing…I found floating in the ocean to have a similar effect. Rejuvenating.
Oh I love the idea of iodine drops! I'm going to give those a try. I love seaweed chips but it's hard for me to remember or want to eat those every day.
So few people understand this complex set of symptoms. I have EDS, MCAS and PoTS and it’s been a Cross for sure. Viruses and other illness or actually anything can trigger a flare. LDN has helped. Prayers for you and all the other sufferers
I was diagnosed with POTS after having COVID. Do all the things you recommended and they definitely help!! I was recently diagnosed with CIRS (chronic inflammatory response syndrome) which is a biotoxin illness and undergoing treatment for it has helped with my POTS!
Potassium in the morning and magnesium in the evening, or just take them both. They deplete each other but both are super important. Eating a lot of organic salad greens helps because they tend to be somewhat balanced in potassium and magnesium. Otherwise, I’ll try to get an avocado in in the morning. It’s not always in the budget, but I find when I can eat smoked salmon with avocado in the morning, I don’t feel like I’m at risk to pass out until lunch (which is pretty good for me! 😋) I’ve gotten into making homemade soup with a good amount of salt lately. I make it healthy and nutritious. It makes a huge difference. I’m discovering the wonders of keeping an emergency can of spam around. I’m a toddler teacher in a daycare and I started this morning with it. Picked at it through the day and didn’t feel faint at all, which for me is almost a miracle. Praying for you! 💕
Kudos for Cameron for doing this video, but as someone that has researched POTS and related diseases, there are much better resources for people that suffer from POTS and want to learn about POTS from a researcher and medical professional. Dr. Diana Driscoll is the Clinical Director of "POTS Care", the only clinic that is dedicated to treating the underlying causes of POTS (I am not afflliated in any way with the clinic or Dr. Driscoll. Dr Driscoll has revolutionized the treatement of POTS and has developed a protocol for treating POTS.
Fluoroquinolone antibiotics (Cipro, Levaquin, Avelox) gave me severe neurological issues, neuromuscular issues, and POTS. Do you know what antibiotics you were given when you went septic?
Antibiotics, although definitely necessary for sepsis, can really damage our microbiomes, triggering neuroimmune and autoimmune conditions. Thankfully, healing is possible 😊🙌🏼.
I really appreciate this video. I don’t have POTS, however I am horrible with my water intake and am always dehydrated. I start pretty much every day with electrolytes in my water. I love the chocolate and salt you showed. I’m going to try this in my coffee! I had always wondered about the salt caves we have near us. I’ve stayed away so far because I have an on again-off again relationship with asthma and I worry I’ll have an attack when in the cave.
Thanks for sharing this info, Cameron! Our 17yo daughter was diagnosed this year with EDS & we think she has POTS. The Children’s cardiologist appointment was odd. He said she has tachycardia and Vasovagal syncope. He stopped short of diagnosing with POTS saying that diagnosis was for “adult things” - whatever that means! She’ll be 18 in less than 2 months. We’re seaking a 2nd opinion. Her geneticist did tell her to up the salt on everything she eats and to drink electrolyte drinks. We’ll get her some compression socks.
I had pots. I took all the things you are and compression socks. What got me over it was conditioning my body. But it was conditioning where I was so careful to to invoke a symptom. I’d get up very slowly. I’d do movements of forward folds and do it so slowly not to provoke a symptom. I’d walk to the point to stay under the symptoms. Doing that seemed to help my body remember it was normal. That’s the only way I can think to describe it. At first it was movement under a minute. After some time it was 5 min then 15 and so forth. I can exercise now a complete hour on weights and body weights with some cardio. The main point is to do things in a way to stay under provoking the symptoms.
I’d never heard of POTS but that was a great video! 🙌 Could you maybe do another video about the diagnosis process? I’ve felt like that and attributed to anemia but I got some blood work and everything was fine so this made me consider that 🤔
I don't know if I have POTS, but I suspect dysautonomia and I know my blood pressure goes nuts during mass when I stand up, kneel and sit and I need to take propranolol beforehand to control my heart because I've almost passed out or doubled over with chest pain several times. I love Lyme disease.
Ultima Electrolytes may be up your alley! Liquid IV has cyanocobalamin which is especially not great for those who have MTHFR gene. LMNT made me feel dehydrated for whatever reason... So it was the opposite of what I was looking for 😅 I will try yours for comparison... & Agree that "Natural Flavoring" will be found sus😂
Not sure if anyone said this already, but "Natural flavor" can be so many things, but most of the time it's a soy base flavor. I had hives for 27 years as a result of another issue, but it broke me so that soy became toxic to me and caused huge issues. Stopped eating soy and no hives ...but natural flavor is a way to hide substances that people may be allergic to. Ask the company to clarify what the natural flavor is!
Thank you so much for this video!! I have dysauotnomia (I don't know if it is sepcifically POTS), Diabetes, and CIRS (chronic inflamatory response syndrome). It's really helpful to see what other people with POTS do. I've been taking the liquid IV electrolytes, but maybe I should try to find some without sugar since I think that might mess with my CIRS. I'm kinda scared to try compression socks since I feel like they might make me feel worse, but maybe I'll give it a go. I've also been using Midodrine for my dysautonomia. If anyone else here has CIRS I'd also really love some tips! Thanks :)
![[Gegagedigedagedago] NEW Help Gegagedigedagedago Nugget escape from Nikocado Avocado Challenge](http://i.ytimg.com/vi/hJWnwRC2Fz8/mqdefault.jpg)
I'm a potsy and EDS priest. I suffer also MCAS (mast cell activation syndrome). I do all the things that you say. One more tip that works for me is to do some soft exercise like walk, makes me feel much better but I have to say that sometimes is very difficult because of the fatigue. My blessing for all zebras and potsies, let's offer to the Sacred Heart of Jesus all ours sufferings!
Amen!! I have MCAS too, so many things to united up to the Sacred heart!! ❤
Im not sure about the MCAS, but otherwise same here!❤ esp about the exercise
Your video was suggested to me after looking into mold and autoimmune diseases. I don't have any major autoimmune diseases but my daughter is covered head to toe in eczema. And her and I are both always low in magnesium. Anyways I guess about 25% of the population can't detox mold properly and about 50%- 80% homes have water damage. I don't know if this information could help anyone but I felt compelled to share it not even sure if it's exactly my families issue either. Pray that everyone can find healing.
I have EDS MCAS and pots. It’s a battle. God bless you, Father
I figured out that when I was hydrating obsessively in the summer, I was actually flushing OUT too many electrolytes and making myself worse. This is why people die from drinking too much water. Now that I am adding them to my water, it really helps. I use BUoY because it doesn't have additives.
I'm not a lady, but I really appreciate your openness about your health. I heard you on Pints and your story encouraged me to start taking my symptoms seriously (still don't know what they are though)
Electrolytes and compression socks are game-changers for sure though. I'd recommend them for anyone who's getting fatigued easily
Welp, maybe it is POTS for me. Just did a 10 minute standing test and went from 75 bpm to 119 bpm. This would explain a lot
I don’t have pots but I do have other chronic health issues and I appreciate when you share about the daily struggles. It is helpful to hear others talk about all thing symptoms and struggles that we have to overcome (and don’t always talk about) everyday. ❤
You look super pretty!
Oh thank you!
You always look amazing!!’
Wow I am so fascinated by this discussion! I "get potsy" during my pregnancies and it took me until this current (5th) pregnancy to get it mostly under control. No midwife or medical professional has been able to help me it's all been trial and error. I didn't have some of the language that you used until this episode-- I just knew that I had lower blood pressure and felt dizzy because of it. When I heard you talk about feeling awful during mass I freaked out! I often feel my worse at mass and actually felt guilty about this (feeling a lack of desire to go, occasionally needing to leave early, not being able to pay attention but just trying to not pass out). This makes a lot of sense though, and I do have other autoimmune diseases so not a big surprise.
LMNT and general salt intake has been the biggest difference in the way I feel this pregnancy. I am SO grateful for it. I use compression socks for travel but I'm going to start to utilize them more now-- especially at mass. Looking forward to looking into some of the other tips as well. God bless you!
oh you poor thing, so glad this helped you! prayers for good rest of pregnancy!
I have never been diagnosed but definitely experience POTS symptoms often. Mass can be SO hard with all of the quick ups and downs!
A couple months ago I found a suggestion online to take salt baths for mineral absorption. Instead of epsom salts though, the recommendation was for a combination of dead sea salts (Minerva brand is good), pink Himalayan salt, and potassium bicarbonate powder-
1-2 cups dead sea salts
1 cup Himalayan salt
1/2 cup potassium bicarbonate
When I’ve done them regularly I’ve found them to be really helpful! Too much magnesium can deplete sodium and potassium, so I like this combo better 🙂
You can do 1/2 or 1/4 the amounts for a foot soak instead too!
will try thanks!
I developed mild POTS after my first pregnancy in 2018. I had my second in 2021 and my third in 2022. Each time it got worse, and during my third pregnancy it was debilitating. I didn't know what POTS was so I thought it was just low blood pressure, as did my midwives.
I find nettle leaf tea to be hugely helpful! It has properties that help equalize blood pressure and it's also really mineral rich.
I had a HTMA test done early this year and it showed I was completely depleted of sodium, like zero reserves, and also low on potassium and magnesium. Since then, I've started liberally using Celtic Sea salt for cooking, I do Epsom salt baths at home, and I supplement with 1-2 LMNT packs a day and trace mineral drops. I'm a completely different person now! I still have trouble on stressful days (sodium is the first mineral depleted during stress) and will add back in my nettles tea.
I also had a GI analysis done and it showed I had low good gut bacteria, which can inhibit mineral absorption. So I started making my own fermented foods, which bonus points are also salty, and my gut health is way way better. I'm sure my body is absorbing more minerals than it was before.
😊 thansk for sharing, yes I use trace minerals too!! Glad you seems to be moving to a better place!
I think for most people with EDS. All the comorbidities can actually be mitochondria malfunction. Likely due to severe nutritional deficiencies. Sometimes it's truly just autonomic. But for me it's mitochondria malfunction as well as histamine overload from chronic infections. I've overcome my symptoms by killing infections and balancing B-vitamins. But that can be really hard. I used Gail Clayton MD for organic acids testing. To explain this simply. The mitochondria are the cellular gate keepers of electrolytes. When they aren't functioning properly, you essentially need to have to have a constant intake of electrolytes because you dump in through the kidneys because it can't get into the cell. Getting rid of infections lowers your histamine burden. I've overcome most of not probably all of my EDS symptoms through killing infections, and balancing B-vitamins.
I too have had POTS. It developed after I competed in a long distance race in Hawaii, I was severely dehydrated and also had an allergic reaction to a sports gel. ( I am allergic to anything derived from corn). I ended up in the ER and since then have had major vertigo, dizziness, nausea when getting up, etc.
I could no longer climb ladders, go on swings or anything that moved. Even swimming made me dizzy.
I too need lots of salt and cannot have sugar.
Recently I have gone on a full carnivore diet.
Only animal protein, fats and water, plus salt.
It’s amazing how much improvement I have had.
I’m not back 100% but it’s a huge improvement in a short time.
I also use the LMNT but only the unflavored.
Stevia doesn’t like me.
Also citric acid, natural flavors are all corn based ingredients. They give me massive headaches.
Also I added4 drops ofLugols iodine 5% in the morning in a shot of water.
This gets rid of headaches and helps with hormone function.
The epsom salt baths sound amazing…I found floating in the ocean to have a similar effect. Rejuvenating.
Oh I love the idea of iodine drops! I'm going to give those a try. I love seaweed chips but it's hard for me to remember or want to eat those every day.
😊oh interesting… I am playing w/ carnivore again too!
Thank you for this video. It was so helpful for me.
So few people understand this complex set of symptoms. I have EDS, MCAS and PoTS and it’s been a Cross for sure. Viruses and other illness or actually anything can trigger a flare. LDN has helped. Prayers for you and all the other sufferers
What mg of LDN did you max out at? I don’t have pots but have Lyme, mcas, etc and just started .5 mg last month
I was diagnosed with POTS after having COVID. Do all the things you recommended and they definitely help!! I was recently diagnosed with CIRS (chronic inflammatory response syndrome) which is a biotoxin illness and undergoing treatment for it has helped with my POTS!
Potassium in the morning and magnesium in the evening, or just take them both. They deplete each other but both are super important. Eating a lot of organic salad greens helps because they tend to be somewhat balanced in potassium and magnesium. Otherwise, I’ll try to get an avocado in in the morning. It’s not always in the budget, but I find when I can eat smoked salmon with avocado in the morning, I don’t feel like I’m at risk to pass out until lunch (which is pretty good for me! 😋) I’ve gotten into making homemade soup with a good amount of salt lately. I make it healthy and nutritious. It makes a huge difference. I’m discovering the wonders of keeping an emergency can of spam around. I’m a toddler teacher in a daycare and I started this morning with it. Picked at it through the day and didn’t feel faint at all, which for me is almost a miracle. Praying for you! 💕
Yes I love avocado too, I have emergency cans of sardines. I don’t think I could do spam. 😂
Kudos for Cameron for doing this video, but as someone that has researched POTS and related diseases, there are much better resources for people that suffer from POTS and want to learn about POTS from a researcher and medical professional.
Dr. Diana Driscoll is the Clinical Director of "POTS Care", the only clinic that is dedicated to treating the underlying causes of POTS (I am not afflliated in any way with the clinic or Dr. Driscoll. Dr Driscoll has revolutionized the treatement of POTS and has developed a protocol for treating POTS.
Oh thank you, will check her out! 😊
Fluoroquinolone antibiotics (Cipro, Levaquin, Avelox) gave me severe neurological issues, neuromuscular issues, and POTS. Do you know what antibiotics you were given when you went septic?
No, but a lot of different ones 😅
Antibiotics, although definitely necessary for sepsis, can really damage our microbiomes, triggering neuroimmune and autoimmune conditions. Thankfully, healing is possible 😊🙌🏼.
I really appreciate this video. I don’t have POTS, however I am horrible with my water intake and am always dehydrated. I start pretty much every day with electrolytes in my water. I love the chocolate and salt you showed. I’m going to try this in my coffee! I had always wondered about the salt caves we have near us. I’ve stayed away so far because I have an on again-off again relationship with asthma and I worry I’ll have an attack when in the cave.
Oh wow I would totally check out the salt caves 😊
Thanks for sharing this info, Cameron! Our 17yo daughter was diagnosed this year with EDS & we think she has POTS. The Children’s cardiologist appointment was odd. He said she has tachycardia and Vasovagal syncope. He stopped short of diagnosing with POTS saying that diagnosis was for “adult things” - whatever that means! She’ll be 18 in less than 2 months. We’re seaking a 2nd opinion. Her geneticist did tell her to up the salt on everything she eats and to drink electrolyte drinks. We’ll get her some compression socks.
Make sure you get her “Real salt”, I wouldn’t be too worried about having the diagnosis, but just do the things to get her feeling good.
@@cfradd Thank you so much!
I had pots. I took all the things you are and compression socks. What got me over it was conditioning my body. But it was conditioning where I was so careful to to invoke a symptom. I’d get up very slowly. I’d do movements of forward folds and do it so slowly not to provoke a symptom. I’d walk to the point to stay under the symptoms. Doing that seemed to help my body remember it was normal. That’s the only way I can think to describe it. At first it was movement under a minute. After some time it was 5 min then 15 and so forth. I can exercise now a complete hour on weights and body weights with some cardio. The main point is to do things in a way to stay under provoking the symptoms.
I’d never heard of POTS but that was a great video! 🙌 Could you maybe do another video about the diagnosis process? I’ve felt like that and attributed to anemia but I got some blood work and everything was fine so this made me consider that 🤔
th-cam.com/users/liveK1-Q1ViNugw?feature=shared
I don't know if I have POTS, but I suspect dysautonomia and I know my blood pressure goes nuts during mass when I stand up, kneel and sit and I need to take propranolol beforehand to control my heart because I've almost passed out or doubled over with chest pain several times. I love Lyme disease.
I’m so sorry, yes me too!!
Ultima Electrolytes may be up your alley! Liquid IV has cyanocobalamin which is especially not great for those who have MTHFR gene.
LMNT made me feel dehydrated for whatever reason... So it was the opposite of what I was looking for 😅 I will try yours for comparison...
& Agree that "Natural Flavoring" will be found sus😂
Hello ladies? I ain't no lady, Mama Fradd!
I like Gatorade Zero. No sugar! Fruit Punch is my fav.
Not sure if anyone said this already, but "Natural flavor" can be so many things, but most of the time it's a soy base flavor. I had hives for 27 years as a result of another issue, but it broke me so that soy became toxic to me and caused huge issues. Stopped eating soy and no hives ...but natural flavor is a way to hide substances that people may be allergic to. Ask the company to clarify what the natural flavor is!
Yes I’ve thought for awhile I need to a door “natural flavors”, I’ve reacted to a few things w/ nothing else in them
Thank you so much for this video!! I have dysauotnomia (I don't know if it is sepcifically POTS), Diabetes, and CIRS (chronic inflamatory response syndrome). It's really helpful to see what other people with POTS do. I've been taking the liquid IV electrolytes, but maybe I should try to find some without sugar since I think that might mess with my CIRS. I'm kinda scared to try compression socks since I feel like they might make me feel worse, but maybe I'll give it a go. I've also been using Midodrine for my dysautonomia. If anyone else here has CIRS I'd also really love some tips! Thanks :)
have you heard of super high dose of vitamin B1/thiamine?
I know women who got POTS from the gartisal vaccine.
Natural flavor is the biggest lie. It is proprietary. It will kick us in the buttt