💞💞💞 Thank you for sharing. I asked but they were cruel despite being told by an ER doctor for home infusions. Even with a note on my discharge papers, as shes well versed in Sjögren's Syndrome (its what i have, 14 years now with Sjögren's type of gastroparesis plus being allergic to UV) only to have my GP laugh at me saying no. That shes "never heard anyone needing that, never heard of Sjorgren's or anyone autoimmune needing it. " told me she can write me for therapist and psychiatric, for being " overly hypochondriac " its very hard to keep finding new GPs that clearly do not study like the few rare to non ' er doctors that handled me every super dehydration and 8 years of going in for saline. I appreciate you being so open with us all. You are more than hoping giving for many and an angel. Also. In southern California, on not the best insurance where they treat you very badly knowing youre "free medical care" they wont treat you human. As a texas native that left 8 years ago to California to survive
I found my favorite sodium electrolyte mix is NormaLyte. The unflavored version tastes way better than LMNT's unflavored in my opinion. It has some of its sodium in the form of sodium citrate and also has citic acid, giving it more of a tangy taste as opposed to the harsher taste of it all being sodium cloride, which it still has. Each packet is 850mg sodium and has potassium and a very small amount of sugar (literally just enough for hydration purposes). It's my favorite and I never see anyone else talk about them and I need them to continue to exist for my own sanity.
I watch a lot of chronic illness RUclips channels and have watched a lot of videos talking about tips, usually the tips are the same, but you actually had some great new advice! I’ve been diagnosed for over a year. I’ve gotten saline infusions before at the hospital, and it helps my energy, but the issue is it takes energy to get them. How do you get a person to come to your house? Does my doctor prescribe it? What is that neck ice ring called? I’d love to get one! I use my journey to fit electrolytes. They can be bought unflavored which I need and they are clean. I might have to try the 2 hour electrolyte method you suggested, my issue is I take my electrolytes in juice because water is too salty, and that would be a lot of juice to drink daily. For anyone interested Bombas 20-30 mmHg compression socks are great. I use Juno extra soft toeless compression socks in the summertime. Juno is great if you need extra soft socks and they come in lots of basic colors and sizes.
i’m a newly diagnosed “potsie” and i’m starting on propranolol 3 times a day! heard it can be scary but that what’s my doc recommended for me. anyone in here who has been on it or is on how do u feel?
I’m on metoprolol and pyridostigimine-aka Mestinon which is different, but I can’t live without them, especially the Mestinon. I take Mestinon 3 times a day and it works great. I have tried some other medications for POTS (I don’t remember which ones, my family takes care of my medications), and what I’m on works best, at least for now. It usually takes more than one medication to help POTS because the medication taken to slow heart rate lowers blood pressure so more medication is often needed.
@@Chronic4u I take it to reduce my heart rate and I believe it helps with fight/flight response. I deal with really bad heart palpitations. My heart rate doesn’t go super high, it rather flutters and causes me to jitter and feel numb I was struggling to sleep at night from palpitations,fight/flight, and anxiety from adrenaline. I believe this is why my doctor prescribed it. I have been on it for a while and am on so many medications, I can’t quite remember, but I think that’s why I’m on it. This is what I found online: Mestinon works by preventing the breakdown of acetylcholine, a nerve transmitter. A disturbance in the transmission of acetylcholine between ganglia is thought to cause the imbalance of the autonomic nervous system in POTS. Pyridostigmine increases parasympathetic nervous system activity and decreases heart rate in POTS.
💞💞💞 Thank you for sharing. I asked but they were cruel despite being told by an ER doctor for home infusions. Even with a note on my discharge papers, as shes well versed in Sjögren's Syndrome (its what i have, 14 years now with Sjögren's type of gastroparesis plus being allergic to UV) only to have my GP laugh at me saying no. That shes "never heard anyone needing that, never heard of Sjorgren's or anyone autoimmune needing it. " told me she can write me for therapist and psychiatric, for being " overly hypochondriac " its very hard to keep finding new GPs that clearly do not study like the few rare to non ' er doctors that handled me every super dehydration and 8 years of going in for saline. I appreciate you being so open with us all. You are more than hoping giving for many and an angel. Also. In southern California, on not the best insurance where they treat you very badly knowing youre "free medical care" they wont treat you human. As a texas native that left 8 years ago to California to survive
I found my favorite sodium electrolyte mix is NormaLyte. The unflavored version tastes way better than LMNT's unflavored in my opinion. It has some of its sodium in the form of sodium citrate and also has citic acid, giving it more of a tangy taste as opposed to the harsher taste of it all being sodium cloride, which it still has. Each packet is 850mg sodium and has potassium and a very small amount of sugar (literally just enough for hydration purposes). It's my favorite and I never see anyone else talk about them and I need them to continue to exist for my own sanity.
I used to use NormaLyte but the citric acid messed with my stomach and MCAS. I’m glad it’s been so helpful for you though!
I watch a lot of chronic illness RUclips channels and have watched a lot of videos talking about tips, usually the tips are the same, but you actually had some great new advice! I’ve been diagnosed for over a year. I’ve gotten saline infusions before at the hospital, and it helps my energy, but the issue is it takes energy to get them. How do you get a person to come to your house? Does my doctor prescribe it?
What is that neck ice ring called? I’d love to get one!
I use my journey to fit electrolytes. They can be bought unflavored which I need and they are clean. I might have to try the 2 hour electrolyte method you suggested, my issue is I take my electrolytes in juice because water is too salty, and that would be a lot of juice to drink daily.
For anyone interested Bombas 20-30 mmHg compression socks are great. I use Juno extra soft toeless compression socks in the summertime. Juno is great if you need extra soft socks and they come in lots of basic colors and sizes.
Also, I think a video in this format for MCAS and EDS would be super helpful!
That’s a great idea!!!
Did insurance cover the in home IV infusions? I’ve felt like those would be super beneficial for me but the in home services are so expensive
My insurance did! I would not have been able to afford it otherwise.
i’m a newly diagnosed “potsie” and i’m starting on propranolol 3 times a day! heard it can be scary but that what’s my doc recommended for me. anyone in here who has been on it or is on how do u feel?
It’s always scary staring a new med! I hope it gives you some symptom relief!
@ thank you 🫶
I’m on metoprolol and pyridostigimine-aka Mestinon which is different, but I can’t live without them, especially the Mestinon. I take Mestinon 3 times a day and it works great. I have tried some other medications for POTS (I don’t remember which ones, my family takes care of my medications), and what I’m on works best, at least for now. It usually takes more than one medication to help POTS because the medication taken to slow heart rate lowers blood pressure so more medication is often needed.
That’s interesting. Thank you for sharing! Which symptoms does mestinon help you with most?
@@Chronic4u I take it to reduce my heart rate and I believe it helps with fight/flight response. I deal with really bad heart palpitations. My heart rate doesn’t go super high, it rather flutters and causes me to jitter and feel numb I was struggling to sleep at night from palpitations,fight/flight, and anxiety from adrenaline. I believe this is why my doctor prescribed it. I have been on it for a while and am on so many medications, I can’t quite remember, but I think that’s why I’m on it.
This is what I found online:
Mestinon works by preventing the breakdown of acetylcholine, a nerve transmitter. A disturbance in the transmission of acetylcholine between ganglia is thought to cause the imbalance of the autonomic nervous system in POTS. Pyridostigmine increases parasympathetic nervous system activity and decreases heart rate in POTS.