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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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Alcohol Tolerance Poll

The Alcohol Tolerance Poll

  • My tolerance of alcohol shifted after I got ME/CFS

    Votes: 195 45.5%
  • My tolerance of alcohol did not shift after I got ME/CFS

    Votes: 41 9.6%
  • After ME/CFS I don't do well with even small amounts of alcohol

    Votes: 267 62.2%
  • After ME/CFS I do OK with small amounts of alcohol but can't tolerate moderate to large amounts

    Votes: 71 16.6%
  • LOL I can actually drink more alcohol now without it effecting me!

    Votes: 21 4.9%

  • Total voters
    429

penny

Senior Member
Messages
288
Location
Southern California
Post illness, no problems per say but odd reaction which is full body flush and really bright brain activity. Completely cures mental fog for around 20 minutes or so, like a type of blood or sugar rush. Then a gradual dimming and then very tired but no PENE, PEM or crash type symptoms. Just very, very tired and want to take a nap....Like I said, I'm weird. (it must be the tail)

Me too! Though I think sometimes I get more than 20minutes, but not much ;)

And speaking of weird, and I might be imagining this, but it seems like I'm less likely to have a headache the next morning when I do have a drink the night before - super weird! Though this makes no sense at all, so it's probably just a coincidence....
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
I agree with Kati. Why anyone would want to drink, or even consider drinking alcohol, when our liver function is already messed up (methylation, sulfation, etc) is truly confounding.
 

penny

Senior Member
Messages
288
Location
Southern California
Funny how talking about alcohol seems to bring out the judge in folks.

You are assuming everyone's liver function is "messed up", which isn't necessarily the case. We've seen over and over again that we are not all the same, why would this be any different?

If an occasional drink helps give me the energy and clarity to enjoy a (very) rare social event (without ANY noticeable Symptom exacerbation or hangover), then its worth it for me, and that doesn't seem so difficult to grasp. But we're all different, and so what works for me (right now) is just that, what works for me (right now).

Now if i was intolerant, if it made me ill, or I had any indications of abnormal liver funcion then the equation would come out differently. But since those things aren't true for me, and since this damned disease has already taken away so many ways of having fun and socializing, I'm not going to swear off another without a reason. Btw I have tried complete abstinence several times (I approach my health experimentally, so have tried a lot of things) and my illness did not change even one little bit. Too bad, abstinance would be an easy 'treatment' to maintain - and cheap!
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
it seems like I'm less likely to have a headache the next morning when I do have a drink the night before - super weird! Though this makes no sense at all, so it's probably just a coincidence....
It makes a lot of sense to me. Alcohol is broken down to acetaldehyde, which is broken down in turn by acetaldehyde dehydrogenase. The first step in making acetaldehyde dehydrogenase lies in making aldehyde dehydrogenase, which in turn can be used to clear lots of different aldehydes. So drinking alcohol can stimulate the very enzyme needed to remove all kinds of harmful aldehydes systemwide, in those who are able to produce the enzymes in sufficient quantity.

Aldehydes are also increased from exercise, and might account a lot for PEM. E.g., malondialdehyde (MDA) is commonly used as a marker in studies on oxidative stress from exercise.

Acetaldehyde, btw, is probably much more toxic than the actual alcohol.
 

Enid

Senior Member
Messages
3,309
Location
UK
Ten years later it goes down very well now and sound sleep. Now why does the previously damaged brain function for which alcohol was impossible accept as a relaxant now ??
 

penny

Senior Member
Messages
288
Location
Southern California
]
It makes a lot of sense to me. Alcohol is broken down to acetaldehyde, which is broken down in turn by acetaldehyde dehydrogenase. The first step in making acetaldehyde dehydrogenase lies in making aldehyde dehydrogenase, which in turn can be used to clear lots of different aldehydes. So drinking alcohol can stimulate the very enzyme needed to remove all kinds of harmful aldehydes systemwide, in those who are able to produce the enzymes in sufficient quantity.

Aldehydes are also increased from exercise, and might account a lot for PEM. E.g., malondialdehyde (MDA) is commonly used as a marker in studies on oxidative stress from exercise.

Acetaldehyde, btw, is probably much more toxic than the actual alcohol.

Huh, interesting! So it may not be a coincidence after all. Funny, I thought of it as a kind of joke, one of those "my body's so out of wack that..." things. I wonder if there are other ways to lower aldehydes? Will have to do some googling later.

Thankfully headaches aren't much of an issue for me, the pain is usually 'manageable' and they don't typically last for a long time.
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
Ten years later it goes down very well now and sound sleep. Now why does the (previously damaged brain now tolerate).

I've had intestinal candida for a long time. Candida yeast makes alcohol. So maybe that's why I'm good at making enzymes that break down alcohol and its byproducts. It turns out that aldehyde dehydrogenases are also good in anti-aging.

As far as sleep, alcohol has the reputation in the general population for promoting sleep but then making a person wake up after 4 hours or so, when the alcohol has been mostly converted to acetaldehyde.
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
quoting George: "odd reaction which is full body flush ".
That sounds similar to "Asian flush syndrome", which occurs in one pathway because of having a lot more than usual of alcohol dehydrogenase, which quickly builds up acetaldehyde. Come to think of it, maybe acetyaldehyde is an excitatory chemical, that's why some experience it as "firewater" but others only as relaxing.
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
]
I wonder if there are other ways to lower aldehydes? Will have to do some googling later.
That's on my own list as well. If you do start a thread, kindly drop me a line and let me know.

It's be extremely interesting to me if there were efforts to correlate reactions to alcohol, exercise, anti-histamines, etc. Is it possible to create discussion subgroups here?
 

Enid

Senior Member
Messages
3,309
Location
UK
Sherlock - alcohol intolerance (though hopefully part of science findings) a small part of the illness ME. Not in isolation but part of the spectrum of pathologies.
 

George

waitin' fer rabbits
Messages
853
Location
South Texas
Me too! Though I think sometimes I get more than 20minutes, but not much ;)

And speaking of weird, and I might be imagining this, but it seems like I'm less likely to have a headache the next morning when I do have a drink the night before - super weird! Though this makes no sense at all, so it's probably just a coincidence....

Cool, another weirdo like me. (big grins) True here as well, less likely to have my daily headache.

Very interesting info Sherlock! Nice sleuthing. (big grins) Thank you and yeah, I'ma gonna do a bit of Googling too!
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
Cool, another weirdo like me. (big grins) True here as well, less likely to have my daily headache.

Very interesting info Sherlock! Nice sleuthing. (big grins) Thank you and yeah, I'ma gonna do a bit of Googling too!
Thank you, George. Here's another wrinkle: non-CFS people with chronically high histamine are also said to have a high tolerance for alcohol. I know I have high histamine and I always had tolerance for alcohol. I'll tell you another thing: it is literally impossible for me to have a hangover. So I know that my system is most likely to be clearing away aldehydes powerfully. Maybe that is why I also have successfully re-established exercise ability through long effort.

I also wonder if the fact that I began with high blood pressure instead of the low BP that most get correlates to aldehydes and/or histamine.

Ideally there would be a survey form for CFSers to fill out with these easily ascertainable attributes. Then if the data were freely available, anybody could examine it to see whatever trends they might think they can find. After all, that's how lots of comets were discovered: by dedicated amateurs just looking. Open source survey data would provide the same type of opportunity. Thinking out loud: imagine if alcohol-tolerators do well without methyl-folate, but non-tolerators do better with zinc, but coffee cravers need more methionine... who knows what associations might be discovered.
 
Messages
18
I posted this before in another part of the forum. I see now it was better suited here. I am currently in the process of researching and testing what I have. In addition to my regular long list of symptoms, I have a strange symptom that pertains to alcohol that no one has ever heard of or experienced. In all my research I have never heard it mentioned except for in this one forum http://www.steadyhealth.com/Bruised_feeling_all_over_body_after_drinking_alcohol_t132901.html. But everyone on this page is describing exactly what happens to me too.

When I drink alcohol, more particularly if I drink more than 2-3 drinks in an evening or over consume, the next day my whole body feels sore and bruised to the touch. It is especially bad around my chest and upper arms and trunk, but it is usually all over. It does not happen immediately, and I do not have any of the typical alcohol intolerance symptoms like flushing, itching, dizziness or nausea/vomiting. I feel fine when I am consuming it, and strangely I often feel fine when I get up in the morning. It starts later in the day of the following day, I feel like I am getting the flu because my skin hurts everywhere to the touch. Sometimes it hurts to even lay down. The day following that (48 hours) I usually always wake up with swelling and inflammation all over and in my face and look like I had an allergic reaction to a bee sting. Obviously I control this by just avoiding alcohol, but its such and odd and rare symptom I keep feeling like answering this mystery might shed light on some of my other symptoms. Anyone else have this?
 
Messages
51
Location
NORTHAMPTONSHIRE, UK
When I first became ill I couldnt put alcohol near my lips, which was a strange feeling as I never ever had a problem before!
But when I couldnt face it, I didnt miss it.
As my health or rather my energy levels and symptoms improved, I felt that I could drink alcohol again, just about half a glass with no problem or obvious repercussions. However the past few weeks have been traumatic for me in a few ways and now my body wont tolerate it again. I really dont want a two day hangover from one small drink, so have decided not to have any at all from now on.
(until my body says different...).
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
As my health or rather my energy levels and symptoms improved, I felt that I could drink alcohol again, just about half a glass with no problem or obvious repercussions. However the past few weeks have been traumatic for me in a few ways and now my body wont tolerate it again.
I think the cases of people going in and out of symptoms and reactions are good clues... but to what I don't know :)

Btw, I haven't had any alcohol for a couple of months but I haven't seen any change in overall symptoms. It seems irrelevant in my case. I sometimes think that I should have a few drinks now and then just to keep up the levels of my alcohol & aldehyde handling enzymes (and my HDL), but I just don't feel like it.
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
I feel fine when I am consuming it, and strangely I often feel fine when I get up in the morning. It starts later in the day of the following day, I feel like I am getting the flu because my skin hurts everywhere to the touch. Sometimes it hurts to even lay down. The day following that (48 hours) I usually always wake up with swelling and inflammation all over and in my face and look like I had an allergic reaction to a bee sting.
Maybe some immune signalling chemical causes the delayed onset symptoms, and oddly it takes a while for the histamine to kick in? There are various threads here on histamine and mast cells. Also, alcohol suppresses counts of various immune cells - including the NKs that PWCs are typically low in.
 
Messages
99
Location
Twin Cities
My tolerance gradually got worse over about 5 years until it got to the point that even a sip of beer (or sometimes kombucha) would leave my headachey and shakey and /exhausted/ for about 48 hours. When I started getting POTS, alcohol would also kick in POTS immediately (heratrate would jump about an hour after a drink) and also in the middle of the night (about 6 hours after drinking). For the last 4-5 years I've drank a few times a year, tolerance gradually seems to be getting better. I can be in the realm of "normal hangover" now, though it only takes one drink to get me there. Sometimes worse than others. Nearly always results in pronounced fatigue, some POTSiness and same shakiness though. If I drink a lot I definitely get really wired/tired for a day or two afterwards, sometimes all the way to the point of extreme panic attacks.
 
Messages
71
I'm still to young to drink in America and I abide by that law, so I can't really speak from experience. Speaking from a scientific perspective, I'd think people with ME/CFS (and especially those with POTS) would respond poorly to it since it depresses the central nervous system. I know people say caffeine causes them problems and it's a stimulant, but I find it helps me. Maybe it depends on the symptoms and how you gauge them? 1 cup of coffee helps energize me and like all my friends and fellow classmates, we rely on it to get through endless hours of studying, haha. :lol: I think we would have to consider the BAC, since some larger guys and gals might say "yeah, 1 drink doesn't make much of a difference to me." On the other side, 1 drink would bring me up to a BAC of .5 leaving anyone (ME, Dysautonomia or not), in a very different state of alertness.
 

antares4141

Senior Member
Messages
576
Location
Truth or consequences, nm
All the evidence for me points to two fundamental things causing or provoking my symptoms. What I eat, and what I breath (mold and chemicals). Before I discovered my gluten sensitivity I was doing two to three shots of whiskey a night in total denial to the adverse effects it was having on me. Life is too short and moment's of "clear" are too sacred to "test" weather certain things are causing me to be bedridden and incapable of functioning cognitively but I put alcohol high up on the list of things that probably cause these symptoms. First let me say I do get drunker but I think the longer term effects I suffer are profound the next day or days (depending on whether I am drinking nightly or just a one time thing.)

Interestingly I don't think this phenomenon is limited to alcohol. My CFS symptoms were so bad a year ago I decided to try smoking small amounts of cannabis to see if it had any therapeutic effects. The verdict, none whatsoever. The pot I was smoking was average grade I'd take one or two hits out of a bowel and be wasted for a couple of hours. To the point where trying to conduct simple chores were next to impossible because half way to getting to where I wanted to start a chore I would forget what I was doing.

Mind altering effects were Much Much more profound than in my late teens and early 20's when I smoked recreationally. Even though I recognized this effect instead of quitting altogether I limited it to bedtime. Did it for quit a few months. (consumed roughly 2/3's oz over a 6 month period) I didn't fully appreciate the effects it was having until I spent some time with my dad and left the dope at home. I was dumbfounded as to why I felt better staying on the porch of a 70 year old mold infested house situated in the middle of a western NC temperate rainforest.
When I came back home to sw new mexico to my controlled environment:
http://s185.beta.photobucket.com/user/antares41_41/media/house1_2.jpg.html?sort=3&o=34
I was bedridden and befuddled. I linked it to two things, I probably took 4 hits off my pipe and the water out here is very "hard water" in that it is full of minerals to the point it leaves stains on the ground if it is leaked for any period of time, or turns a pan white if you boil water it. Both those discoveries were a revelation for me.

When I was doing these things on a daily basis it wasn't overly obvious to me the profound effects they were having, although that became very clear when I came home and these two different variables were the only things I could tie my reactivity to.

What I learned? Pot smoking would be a wonderful type of cognitive stress test for a physician looking for a tangible way to verify CFS in a patient, which is paramount if were ever going to be taken seriously by main steam. Stop drinking ground or tap water and go to distilled.
Robert Christ