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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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More improvement!

Ocean

Senior Member
Messages
1,178
Location
U.S.
Ocean I have this thread about my supplements. I really got better much faster with my POTS (Autonomic Neuropathy in my case) when my doctor added Alpha Lipoic Acid and then Benfotiamine. All of my supplements have helped, worked together for my CFS and POTS.

http://forums.phoenixrising.me/showthread.php?15440-Sally-s-supplements

Thanks so much Sally. I'm in a crash with a fever now. I'm going to look at this as soon as I have a little recovery. Thanks for sharing what's worked for you.
 

Ocean

Senior Member
Messages
1,178
Location
U.S.
Very happy for you Sally :balloons:

Yes, me too on the improvements. Have come a long way from that bed bound abyss.

Nice bug too, silver convertable in the sun! Have fun!

Tristen, do you know what helped improve your POTS?
 

Tristen

Senior Member
Messages
638
Location
Northern Ca. USA
Tristen, do you know what helped improve your POTS?

It never worked for me to treat the OI with Rx drugs like Midodrine, Florinef, Beta Blockers, stimilant drugs, etc. What worked best for me was just consuming plenty of Isotonic fluids. But it wasn't until I treated the viral infections with Rx Av's, that I began to get real relief of the OI and return from the undead.
 

Ocean

Senior Member
Messages
1,178
Location
U.S.
It never worked for me to treat the OI with Rx drugs like Midodrine, Florinef, Beta Blockers, stimilant drugs, etc. What worked best for me was just consuming plenty of Isotonic fluids. But it wasn't until I treated the viral infections with Rx Av's, that I began to get real relief of the OI and return from the undead.

Thanks Tristen. Did you buy drinks or did you make your own? I prefer to buy something but would rather find something other than Gatorade, something maybe a bit healthier.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Thanks Tristen. Did you buy drinks or did you make your own? I prefer to buy something but would rather find something other than Gatorade, something maybe a bit healthier.

Unflavored Pedialite is one of the better ones you can buy. CVS & Walgreens have their own generic brands. It has always helped me. The flavored ones have a lot of sugar and taste kinda icky too.

Sushi
 

Ocean

Senior Member
Messages
1,178
Location
U.S.
Unflavored Pedialite is one of the better ones you can buy. CVS & Walgreens have their own generic brands. It has always helped me. The flavored ones have a lot of sugar and taste kinda icky too.

Sushi

Thanks Sushi. That's a good tip. My husband's at the store right now and I left him a message to see if they have some. Thank you!
 

Ocean

Senior Member
Messages
1,178
Location
U.S.
Do people drink the electrolyte drinks just all day throughout the day, or is there some other way it should be done?
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
:victory::victory::victory: wou-hou! You are beautiful and so happy to be healthier. We can feel it.
Your post is a breath of fresh air. I love the water in the background. Is it an ocean?Thank You for this very positive post. Lots of hope for things to come! :) Take it easy, though. Don't overdo it.

Like Ocean, i am going through a pretty bad crash rigth now. Just got my medical report for the insurance company and I read that my condition has worsened since the last report. Under prognosis, I can see that it is a "chronic (underlined by my GP) condition" and under expected date of return, "No improvement is expected". I knew that but to see it in writing, it scared me. I guess I am in denial. I did not think I could get worse over the years. How is it possible. What i'm doing is not helping ME, for sure. I will have to figure out a way to get out of this one.
 

Ocean

Senior Member
Messages
1,178
Location
U.S.
:victory::victory::victory: wou-hou! You are beautiful and so happy to be healthier. We can feel it.
Your post is a breath of fresh air. I love the water in the background. Is it an ocean?Thank You for this very positive post. Lots of hope for things to come! :) Take it easy, though. Don't overdo it.

Like Ocean, i am going through a pretty bad crash rigth now. Just got my medical report for the insurance company and I read that my condition has worsened since the last report. Under prognosis, I can see that it is a "chronic (underlined by my GP) condition" and under expected date of return, "No improvement is expected". I knew that but to see it in writing, it scared me. I guess I am in denial. I did not think I could get worse over the years. How is it possible. What i'm doing is not helping ME, for sure. I will have to figure out a way to get out of this one.

Please don't take that as gospel. Sometimes they write that kind of thing for insurance purposes, not because there is literally no hope of improvement. More to signify to insurance that there isn't a set deadline of expected improvement and that this is a chronic, long-term problem. I'm thinking of you and hoping you get out of your crash. I am doing somewhat better with mine but still weak and very tired.
 

Questus

Senior Member
Messages
125
Thanks Tristen. Did you buy drinks or did you make your own? I prefer to buy something but would rather find something other than Gatorade, something maybe a bit healthier.

I don't care for Gatorade or any of the drinks on the market. I found something called ElectroMix. Powdered potassium, magnesium, calcium, manganese, chromium...Comes in a small packet, (30 packets per box)...Mix with a small amount of cold water. Has a lemon-lime flavor. Not bad at all and I get a very quick lift from it.

Sold at Whole Foods, health stores, and many sites online.

Also found a new compression sock I really like called CEP Compression running socks...Calf high, made for runners and cyclists.

Give the Electomix a try if you don't like the other options...It has 0 calories too.

Best...Questus
 

Ocean

Senior Member
Messages
1,178
Location
U.S.
I don't care for Gatorade or any of the drinks on the market. I found something called ElectroMix. Powdered potassium, magnesium, calcium, manganese, chromium...Comes in a small packet, (30 packets per box)...Mix with a small amount of cold water. Has a lemon-lime flavor. Not bad at all and I get a very quick lift from it.

Sold at Whole Foods, health stores, and many sites online.

Also found a new compression sock I really like called CEP Compression running socks...Calf high, made for runners and cyclists.

Give the Electomix a try if you don't like the other options...It has 0 calories too.

Best...Questus

Thanks Questas. I'm going to look into the stockings. Do they really make a noticeable difference?
 

Questus

Senior Member
Messages
125
Thanks Questas. I'm going to look into the stockings. Do they really make a noticeable difference?

Ocean, I found this on a website that explains some of the ways compressions stockings work...

"Compression stockings are made of strong elastic material and fit tightly at the feet and gradually become less tight at the knee/thigh. The pressure in the stockings is graded and this allows for the stockings to constantly squeeze the leg muscles. This motion helps to drive blood back to the heart, reduce swelling in the feet and prevent blood clot formation."


Running Times Magazine has this to say...http://runningtimes.com/Article.aspx?ArticleID=13830

The primary rationale behind wearing compression socks in a race is that they may enhance venous return to the heart through a more efficient calf muscle pump, leading to increased endurance capacity. And there is the notion that because muscles are kept more compact, balance and proprioception are improved and muscle fatigue is minimized.

I've also learned that compression garments are worn by many athletes to enhance performance, and the use of compression swimsuits has been a subject of debate in international racing.

Here's a more complex explanation of how compression garments affect muscles, circulation and other functions.
http://www.bsccompression.com.au/i-...s-enhance-proprioception-and-redu-faq-17.html

So, they are worth trying..."Enhanced venous return to the heart"! That's a good thing...

I feel the Electromix makes a noticeable difference. Am sure the other products do as well, I just don't like the taste of anything else I've tried.

Best, Questus
 

Sallysblooms

P.O.T.S. now SO MUCH BETTER!
Messages
1,768
Location
Southern USA
I have even more improvement!!! I ate lunch at a restaurant with hubby yesterday as usual. I have been able to walk into restaurants for a while with my POTS. Before, hubby pushed me in my w.chair or I would be horribly ill with POTS.

After eating, I asked him to take me to a clothing store, Chico's, nearby. He sat in the car and listened to basketball and looked at his Ipad, ha. I wanted to go in alone to see how it would go. I usually take a folding chair to sit on when I get lightheaded.

Well, I walked around and shopped and tried on clothes!!! I did GREAT!!!!!! The lady was slow when I was paying for my clothes so I thought, "Oh no, I will have to sit." But did great. :victory:

I then got back in the car and I had tears in my eyes. Hubby thought I was sick, ha. I said "NO, I shopped like a normal person! It was FUN!" He was so happy!

When POTS started, and I could leave the house, he used to push my w.chair in all stores. I would tell him what clothes to show me and he would take it off of the rack to show me. He has always been so wonderful. Well, I am just so happy to be past that now. It felt so good. Still healing like a snail. :D
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Messages
72
What a blessing! It's truly wonderful to hear when someone is having improvement, even if it's just a little bit. As for myself, I'm actually getting worse...but I'm counting on Jesus to help me get through everything. I remember one of the first times I walked through a store by myself. I was so nervous and that made me feel terrible, but once I got finished, it was such a blessing to know that it could be done by the strength of God! :) Can't wait to hear more improvement!!!
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
That was so wonderful to hear that you "shopped like a normal person". :)

Its day 3 for me wearing compression stockings and I think they may be helping :) . Today, I actually felt like "I may" be able to stand at sink and do dishes, so I must be feeling better wearing them.