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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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Better with alcohol

JalapenoLuv

Senior Member
Messages
299
Location
unknown
OI = orthostatic intolerance. Yes, I do have CFS/ME. It is strange... I know that alcohol is a painkiller itself, but I do get more energy and feel less dizzy... it doesn't add up.

CFS causes massive mitochondrial damage. Mitochondria burn oxygen and fat. If they aren't working then your body has to use carbs (it is dual fuel). Most beers have a lot of carbs in them so maybe beer is helping your nerves work better by providing a carb source. Solution-eat more vegetables and healthy carbs.
 

Iquitos

Senior Member
Messages
513
Location
Colorado
All alcohol is ultimately metabalized as a sugar. Red wine is my "poison" of choice. Beer also has hops which is related to cannabis so that may affect a beer drinker's reaction somewhat. Apparently my treatment with medical cannabis has changed my tolerance for alcohol in a positive way.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Got word from my doctor that I need to increase my salt intake. Not quite sure how to do this...

Each day I mix 1/2 teaspoon of salt and 1/2 teaspoon of "No Salt" (potassium chloride substitute for salt) into a liter of water and add a splash of lemon juice. I call it my "Seawater" and drink that throughout the day. I used to add "Calm" magnesium citrate as well but I can't get it locally anymore.
 

JalapenoLuv

Senior Member
Messages
299
Location
unknown
All alcohol is ultimately metabalized as a sugar. Red wine is my "poison" of choice. Beer also has hops which is related to cannabis so that may affect a beer drinker's reaction somewhat. Apparently my treatment with medical cannabis has changed my tolerance for alcohol in a positive way.

False, actually alcohol is oxidized by mitochondria in the liver. It doesn't undergo glycolysis.
 

deleder2k

Senior Member
Messages
1,129
@deleder2k

What type of OI do you have?

I did a POTS test at the hospital the other week. I was sitting and then I had to stand for 10 minutes while BP and pulse was measured. No significant effect on both. But sometimes when I get up quickly from the bed it feels like I'm fainting and my pulse goes up drastically.

My greatest challenge is to stand up as I feel lactic acid pumping after a minute or two. I get dizzy and eventually muscle spasms occur.
 

NK17

Senior Member
Messages
592
I did a POTS test at the hospital the other week. I was sitting and then I had to stand for 10 minutes while BP and pulse was measured. No significant effect on both. But sometimes when I get up quickly from the bed it feels like I'm fainting and my pulse goes up drastically.

My greatest challenge is to stand up as I feel lactic acid pumping after a minute or two. I get dizzy and eventually muscle spasms occur.
Same situation here. Last year I had a poorly run TTT which was negative for POTS.
Since I was very young and more markedly after a bad case of Infectious Mono I've been experiencing and living with OI.
I've never fainted, but I've crashed into a lamppost while walking to school one day, and have had many other weird episodes.

These days I'm very symptomatic and like you whenever I get up from bed at a pace of a normal healthy person, my pulse goes up and I don't feel well.
Something is definitely not computing...
I also get the similar feeling of lactic acid accumulation, burning and muscles cramping and an overall feeling of being poisoned from the inside.
 
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Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
I did a POTS test at the hospital the other week. I was sitting and then I had to stand for 10 minutes while BP and pulse was measured. No significant effect on both. But sometimes when I get up quickly from the bed it feels like I'm fainting and my pulse goes up drastically.

My greatest challenge is to stand up as I feel lactic acid pumping after a minute or two. I get dizzy and eventually muscle spasms occur.
So you were given the "poorman's tilt table test" at a hospital?
 

NK17

Senior Member
Messages
592
So you were given the "poorman's tilt table test" at a hospital?

Just to make things clear: I was given a real TTT @ a hospital, in the cardio department where they didn't and don't know squat about autonomic problems and/or ME manifestations of OI.
I knew I didn't have POTS, so in retrospect I shouldn't have done it.

The real poorman's tilt table test is free and any doctor should know how to run it and should do it in any case when there is a suspicion of autonomic dysfunction and complaints.

All you need is the patient (the poorman/poorwoman ;) a wall, a blood pressure machine and a nurse to intervene in case of fainting. You also need time, time which is money ...

In the end any good md could evince OI and POTS just by listening to his patients reporting their everyday life symptoms. You can certainly confirm it via a poorman's test or a true TTT afterward.

Too bad most doctors are in a rush, interrupt their patients every 18 seconds on average (if I remember correctly), but I'm in too much PEM PENE these days to go into any more detail.
 
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optimist

Senior Member
Messages
434
Location
Norway
I did a POTS test at the hospital the other week. I was sitting and then I had to stand for 10 minutes while BP and pulse was measured. No significant effect on both. But sometimes when I get up quickly from the bed it feels like I'm fainting and my pulse goes up drastically.

My greatest challenge is to stand up as I feel lactic acid pumping after a minute or two. I get dizzy and eventually muscle spasms occur.

Have you ever tried taking extra salt for OI?
Some weeks ago I started taking some salt diluted in water and I got a whole lot better. At then I had no idea about OI, but I was pointed to the possibility in one of my recent threads. I wonder if it might have something to do with increased blood volume. I have just bought a BP monitor (Apotek 1 has them for kr. 299,- now) and I did have a sudden drop in BP when standing up which could mean I have this OI stuff. Like you I used to almost faint when standing up. My eyes would turn off for a moment... I still need to do some control measures, but it seems to be a possibility why salt makes me better.
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
@NK17

I gave myself the "poorman's tilt table test" at home by myself

Diagnosed myself with POTS then had to fight a boat load of "so called"cardiologists
which none had a clue.
Found the only doctor in this huge network (on my own!) with the know how to diagnose POTS
had the tilt table test and was then clinically positive for POTS
However, since I made all the other doctors(his fellow colleagues) look incompetent,he was as weak as it gets on the dictation of the test.

He called it and I quote "positive for orthostaic tachycardia syndrome"

When I asked the nurse if this was a typo,she said,"no, we interchange orthostaic tachycardia syndrome
with postoral orthostaic tachycardia syndrome but they mean the same thing"



Wow, me just writing this down has flamed me to an entirely new level..
 
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deleder2k

Senior Member
Messages
1,129
Have you ever tried taking extra salt for OI?
Some weeks ago I started taking some salt diluted in water and I got a whole lot better. At then I had no idea about OI, but I was pointed to the possibility in one of my recent threads. I wonder if it might have something to do with increased blood volume. I have just bought a BP monitor (Apotek 1 has them for kr. 299,- now) and I did have a sudden drop in BP when standing up which could mean I have this OI stuff. Like you I used to almost faint when standing up. My eyes would turn off for a moment... I still need to do some control measures, but it seems to be a possibility why salt makes me better.

Yes. I am trying that now. Not sure how much I should take though. And not sure if it helps or not. Tastes like ***. Maybe I should try sea salt pills instead.
 
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NK17

Senior Member
Messages
592
So sorry for the ordeal you had to go through @Tired of being sick.

In the end you have the diagnosis down on paper, but the way they played with words is ridiculous!

They should be ashamed to put sick people through this.

We really need CoE Centers of Excellence where we can go and be checked, monitored, tested and treated.