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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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POTS: The Remarkable condition

Violeta

Senior Member
Messages
2,895
Could it be "potassium" you are graving?

Thank you for mentioning potassium. That might be the thing about potatoes that messes me up. Yesterday I ate a banana and had insomnia and woke up with a miserable headache. I am taking some salt right now, maybe that will help.

I know it is widely know about needing lots of salt when one has POTS or orthostatic hypotension, but I never thought about the potassium angle.

If it helps, you have helped me solve a problem I have had for a long time. Thanks for sharing.
 

ChookityPop

Senior Member
Messages
583
Just got my potassium chloride. The ideal ratio of sodium to potassium intake is roughly 1:3 — that is, potassium intake would ideally be around three times our sodium intake.

What to do if you are doing 10g salt a day?
 

Rufous McKinney

Senior Member
Messages
13,249
Could it be "potassium" you are graving?

I went on a Tibetan wind diet...and root vegetables are a key ingredient. Energetically grounding food.

I proceeded to start eating more potatoes (and I"d also roast carrots and sometimes fennel root which is wind dispersing).

I had been on the Don't Eat Potatoes, bad for blood sugar, story.

So now I just eat potatoes more often. And yes there are many diverse root vegetables I should be deploying and mostly I don't.
 

overtrain

Medical Mafia needs to die via this virus.
Thanks for the info. re POTS. I think I have this & thought everyone got sort of dizzy standing up sometimes. But I get dizzy A LOT & just figured it was a weird quirk.

I do remember when I was extremely ill with CFS/ME a decade back I was dizzy whenever I stood but thought it was low blood sugar. Have never bothered to mention it to a doctor. 😶 Yesterday in the heat standing outside I have to go to the ground several times. All I was doing was standing upright, & was well-hydrated.

Today I've started randomly shaking the salt shaker in my hand to eat, & will see if that makes a difference. Again, thanks, & good luck all.
 

SWAlexander

Senior Member
Messages
1,897
I also stopped treading my permanent low Potassium with bananas and take now “kalinor 600 mg” low Potassium is one main contributor to constipation, feeling of skipped heartbeats or palpitations, fatigue, muscle damage, muscle weakness or spasms and tingling or numbness.

The most important part of yesterday was an endocrinology class on "corticotropic insufficiency" (first time diagnosed in 1979).
I was shocked to hear that many LC patients experience an Addison crisis that was undetected or even received the wrong treatment. Very rarely patients with extreme exhaustion are tested for low cortisol/ACTH. Not even in hospitals. A cortisol/ACTH test should be a part of the protocol.
 

Violeta

Senior Member
Messages
2,895
Thanks for the info. re POTS. I think I have this & thought everyone got sort of dizzy standing up sometimes. But I get dizzy A LOT & just figured it was a weird quirk.

I do remember when I was extremely ill with CFS/ME a decade back I was dizzy whenever I stood but thought it was low blood sugar. Have never bothered to mention it to a doctor. 😶 Yesterday in the heat standing outside I have to go to the ground several times. All I was doing was standing upright, & was well-hydrated.

Today I've started randomly shaking the salt shaker in my hand to eat, & will see if that makes a difference. Again, thanks, & good luck all.

I find Butcher's Broom and tyrosine very helpful for this condition. Also, compression clothing helps, although I'm having a hard time making myself wear it in this heat.

The heat does make it so much worse.

I get anxiety when I've been standing too long, too. Does anyone know why it causes anxiety?
 

overtrain

Medical Mafia needs to die via this virus.
I find Butcher's Broom and tyrosine very helpful for this condition. Also, compression clothing helps, although I'm having a hard time making myself wear it in this heat.

The heat does make it so much worse.

I get anxiety when I've been standing too long, too. Does anyone know why it causes anxiety?
Thanks for the advice. Will check out BB, & I have a dim recollection of trying tyrosine once but had a bad reaction. The heat is just so, so hard to take. I dread going out. I sleep in cold temperatures, esp. in winter, so I can bundle up. Otherwise, sleep's impossible. Doesn't matter if it's 55 in the house, I'm still getting up a few times each night to change my clothes because they're soaked in sweat. And I don't like standing either, & can't stand still. The last 'episode' I had came on while standing in a long Post Office line. Barely made it to the car after, & sat there a long while before I felt ok enough to drive 3 blocks home. 😒

With Factor V Leiden Mutation, I should wear those stockings when I fly at this point in life. Thankfully I never fly. I couldn't stand in this heat dealing with stockings. I sit at home with my legs curled up so my knees are almost the height of my head on the couch. I've never been comfortable sitting like a normal person, just in a chair, legs down. No.
 

Violeta

Senior Member
Messages
2,895
Thanks for the advice. Will check out BB, & I have a dim recollection of trying tyrosine once but had a bad reaction. The heat is just so, so hard to take. I dread going out. I sleep in cold temperatures, esp. in winter, so I can bundle up. Otherwise, sleep's impossible. Doesn't matter if it's 55 in the house, I'm still getting up a few times each night to change my clothes because they're soaked in sweat. And I don't like standing either, & can't stand still. The last 'episode' I had came on while standing in a long Post Office line. Barely made it to the car after, & sat there a long while before I felt ok enough to drive 3 blocks home. 😒

With Factor V Leiden Mutation, I should wear those stockings when I fly at this point in life. Thankfully I never fly. I couldn't stand in this heat dealing with stockings. I sit at home with my legs curled up so my knees are almost the height of my head on the couch. I've never been comfortable sitting like a normal person, just in a chair, legs down. No.

I didn't realize it causes sweating. I ran out of Butcher's Broom and more didn't arrive until yesterday. The night before last I was sweating during the night. I couldn't figure out why. I'm glad you mentioned that, although I'm sorry things are so difficult for you.

Not being able to sleep is a horrible nightmare.
 

SWAlexander

Senior Member
Messages
1,897
Does anyone know why it causes anxiety?
My anxiety is a mixture of physical pain and low cortisol. In my case, standing or walking for too long causes a slow creeping pain (Antiphospholipid syndrome) in the legs and arms (https://www.nhs.uk/conditions/antiphospholipid-syndrome/symptoms/). If I know I have to face physical or mental stress during the day, I take an extra 5 mg (or even 10mg) of Hydrocortisone (no later than noon) to prevent an Addison crisis.
 
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overtrain

Medical Mafia needs to die via this virus.
I didn't realize it causes sweating. I ran out of Butcher's Broom and more didn't arrive until yesterday. The night before last I was sweating during the night. I couldn't figure out why. I'm glad you mentioned that, although I'm sorry things are so difficult for you.

Not being able to sleep is a horrible nightmare.
Hi. I'm not taking butcher's broom. I'm actually in my post not attributing anything to night sweats. I have no idea what causes my sweating. It's just another weird thing that happens even when I keep the house 55 at night in winter. Sweating started somewhere in my 30s, a little here & there at night, & just gets worse. Eventually I'll just buy a baby pool & sleep in that. 😆