Alcohol Intolerance poll. Please do the poll even if your answer is no.

[Hutan]

More on that, the rabbit study above reported the endothelin-1 synthesis is decreased by alcohol.

About endothelin-1:

ET-1 is a potent vasoconstrictor, meaning it causes blood vessels to constrict or narrow. ET-1 has been shown to be one of the most potent vasoconstrictors. Vasoconstriction is mediated principally by ETA receptors on the underlying smooth muscle, where a small proportion of ETB receptors may also be present.

There is a bit of evidence that endothelin-1 is increased in ME/CFS e.g. in two studies by different teams:

The ET-1 concentration was significantly elevated in both ME/CFS and PCS patients compared to HCs and PCHCs.

But they did find some differences between the two groups of patients combined and the healthy controls. It looks like patients had lower activity levels, worse sleep quality, a worse lipid profile and higher levels of endothelin-1 and VCAM-1.

What if over-production of endothelin-1 in ME/CFS was an adaptation to poor control of blood vessels because the peripheral vascular nerves aren't working properly? (or maybe a deficiency of effective endothelin-1 receptors?) And what if alcohol stopped that adaptative increased endothelin-1, resulting in even worse vasodilation and lack of a constrictive response?

 

[Starrynight]

I think this is a really interesting question. However the poll doesn't seem to have a box which corresponds to the best description of the reaction I have WHEN severely alcohol intolerant. In that case for me it is like rapidly feeling "poisoned" or more specifically the Disulfiram + alcohol reaction as I have understood it from reading descriptions (I don't have personal experience of that medication). This never happened to me prior to ME/CFS

The really confounding thing is that this comes and goes and doesn't necessarily correlate with severity in my case. When I am intolerant it is bad enough for me to give up alcoholic drinks for several years, which I have done and then found, perhaps by chance, that I can tolerate some and go back to drinking a bit for several years. Until it comes back...!

 

[Haveyoutriedyoga]

I think this is a really interesting question. However the poll doesn't seem to have a box which corresponds to the best description of the reaction I have WHEN severely alcohol intolerant. In that case for me it is like rapidly feeling "poisoned" or more specifically the Disulfiram + alcohol reaction as I have understood it from reading descriptions (I don't have personal experience of that medication). This never happened to me prior to ME/CFS

The really confounding thing is that this comes and goes and doesn't necessarily correlate with severity in my case. When I am intolerant it is bad enough for me to give up alcoholic drinks for several years, which I have done and then found, perhaps by chance, that I can tolerate some and go back to drinking a bit for several years. Until it comes back...!

Yes it’s odd how it comes and goes isn’t it!

 

[Sean]

I think this is a really interesting question. However the poll doesn't seem to have a box which corresponds to the best description of the reaction I have WHEN severely alcohol intolerant. In that case for me it is like rapidly feeling "poisoned" or more specifically the Disulfiram + alcohol reaction as I have understood it from reading descriptions (I don't have personal experience of that medication). This never happened to me prior to ME/CFS

The really confounding thing is that this comes and goes and doesn't necessarily correlate with severity in my case. When I am intolerant it is bad enough for me to give up alcoholic drinks for several years, which I have done and then found, perhaps by chance, that I can tolerate some and go back to drinking a bit for several years. Until it comes back...!

Important variable.

Sometimes a drink or two can be fine, at least at the time of drinking. It has the normal expected pleasant effects. At other times it feels unpleasant pretty quickly, within maybe 10 min. The 'poisoned' sensation, as it were.

 

[hotblack]

Interesting that there are people talking of a variable response. Not something those of us who don’t drink can attest to but I guess it’s possible we’d see the same. The talk of experiments ‘for science’ becomes more appealing!

They also mention botulinum toxin as achieving the same effect - stopping vascular nerve function results in vasodilation and a lack of ability to constrict when faced with a challenge

What if over-production of endothelin-1 in ME/CFS was an adaptation to poor control of blood vessels because the peripheral vascular nerves aren't working properly? (or maybe a deficiency of effective endothelin-1 receptors?)

I’m interested in how vascular nerves could fit in and wonder about correlation with other nerve problems often mentioned (peripheral neuropathy, small fibre neuropathy). And the studies which have shown endothelial dysfunction of some sort.

Difficult to survey the latter but maybe we can get an idea of prevalence of the former from people here?

 

[Snow Leopard]

I get circulation issues like subconjunctival hemorrhage if I drink more than a bit.

 

[T&O]

This is very much my experience too, horrendous flulike/toxic-type symptoms and muscle weakness. And beyond that, I even get a bad reaction to alcohol-containing cosmetic items such as deodorants and skin lotions. Just the smell makes me feel 'off'.


I developed intolerance to caffeine. Didn't have intolerances to either alcohol or caffeine before I got ME.

ETA: Interestingly, a doctor I saw a while back said my blood tests showed something odd to do with liver function - she remarked she had only seen that in alcoholics, so didn't know what to make of it with me, as she knew I don't drink. If this result happens in people with ME, I wonder what the mechanism might be behind that?

Could this be why Naltrexone (low doseage) can have a beneficial effect for ME sufferers ?

 

[T&O]

… to do with liver function - she remarked she had only seen that in alcoholics, so didn't know what to make of it with me, as she knew I don't drink…”

 

[shak8]

I use alcohol as a drug to dampen brain activity. I use measure out less than an ounce (one ounce=a "drink") of vodka into an iced diet lemon lime soda and add fresh lime juice.

I drink this usually before 3pm, so it doesn't interfere with sleep (awakenings) as much. It is also feels justified on hot days or coping with the constant stress of political news.

Alcohol's effect is immediate, which is useful.

I drank alcohol yesterday after a 90 minute shopping trip (Trade Joe's--an Aldi-like store) toward the end of which I became hyper, almost manic from exceeding my energy limits and being exposed to stimulation. I struck up a convo with a fellow shopper as though I was doing stand-up comedy. That's my last gasp. Made a new friend, phone numbers exchanged but price paid.

Shopping there was a novel or rather non-routine experience and I couldn't just get in, get out in 15 minutes.

I couldn't turn off my hyperactivity when I got home, like a wind-up toy. Only after a bit of alcohol's CNS depressant effect did I finally begin resting--it took me 3 hrs of manic thinking before I realized I should try a my vodka drink. I had it and then managed to lie down in my usual resting spot on a heating pad and begin the recovery..

So, despite the warnings about the risks of alcohol to health, I am currently using it in small doses, after an 8-month period of easy abstinence, initally resuming imbibing due to a certain USA election result.

 

[Ravn]

This study (on a completely different topic, S4ME thread) recorded ‘alcohol drinker status’ - % of current, never & previous drinkers - in an ME/CFS cohort of n=875 compared to UK Biobank healthy controls (table 1)

Unless I missed it it doesn’t record the amount of alcohol consumed, i.e. light vs heavy drinkers

The number of pwME recorded as current drinkers was 82.9% vs 95.8% of the controls

 

[StellariaGraminea]

I think I could drink a little alcohol now 5 years in and be ok, but was never really a fan and rarely drank anyway and decided my body is under enough stress without adding that on.

In the first couple of years though was very intolerant for the rare times I tried anything. I can remember drinking a very small amount of wine with a meal once and very shortly afterwards my arms became dramatically weak, could barely lift them. I think my legs might have been weaker too but not so dramatically. It took a day or so for the effect to wear off, so I didn't try drinking anything again for a long time.

 

[V.R.T.]

Worsened hangovers at 19 were one of the first signs along with insomnia and DPDR that something wasn't right with me. When I got full ME/CFS seven years later the hangovers became even worse and I noticed feeling drunker with less alcohol although I was trying to cut down a lot on drinking at the time so could have been reduced tolerance.

I suspect my body doesn't metabolise alcohol very well. People would sometimes say I smelled like vodka when I'd only had 3 pints.

 

[AliceLily]

I was given a bottle of Villa Maria Pinot Noir for Christmas by someone who doesn't know I am intolerant. It is a red wine. Funny thing is, because I don't drink I don't know how good the wine is or whether Pinot Noir is normally a red wine so I may not even of had to say red wine.

It is sitting at the bottom of a cupboard. The only way I am going to be able to drink it is to have about 5 or 6 sips every other night or more with a meal. I have a feeling from memory that I am even more intolerant to red wine.

 

[bobbler]

I was given a bottle of Villa Maria Pinot Noir for Christmas by someone who doesn't know I am intolerant. It is a red wine. Funny thing is, because I don't drink I don't know how good the wine is or whether Pinot Noir is normally a red wine so I may not even of had to say red wine.

It is sitting at the bottom of a cupboard. The only way I am going to be able to drink it is to have about 5 or 6 sips every other night or more with a meal. I have a feeling from memory that I am even more intolerant to red wine.

Ha! But useful for this audience.

Wine is the alcohol I’ve been most obviously ‘sensitive to’ so never been ok with it ever, even when at certain points some other types I could manage as long as I could live with the aftermath etc (wine makes me incredibly drunkfrom just sips so I can’t even toast with it - or is it? I end up slurring my words but normally if that was drunkness you’d also be rowdy and falling over in that same ‘stage’ wouldn’t you?)

So I’d have no clue that Pinot noir was red even tho I worked in bars etc for a few years so know what I think is the obvious (Chardonnay, Merlot etc) but is likely decades out of date but remember back then villa maria was thought of as a pretty ‘above average’ brand.

 

[bobbler]

Worsened hangovers at 19 were one of the first signs along with insomnia and DPDR that something wasn't right with me. When I got full ME/CFS seven years later the hangovers became even worse and I noticed feeling drunker with less alcohol although I was trying to cut down a lot on drinking at the time so could have been reduced tolerance.

I suspect my body doesn't metabolise alcohol very well. People would sometimes say I smelled like vodka when I'd only had 3 pints.

Interesting- I had an incredibly rude and unpleasant by ‘people I’ve seen over a lifetime now’ standards tutor at uni once so out it down to how vile she was (every time it was some made up reason to say she hated me that seemed to be for no reason to do with me)

One time I was trying to present my work and she just waved her hands and said I ‘stunk’ of booze. She was so nasty I didn’t have words but also knew replying to say I didn’t know why would have just extended it. I did drink a bit then but not the day before seeing her and not in large quantities any days near seeing her.

I went away puzzled and self-conscious and eventually assumed as I worked in a bar until 6months before (plus did do a few shifts at the start of that year but health wise realised I no longer could) so popped in to see old colleagues that maybe my coat had dipped in something spilt on the bar or from being hung up there that I rarely dry cleaned but then its weird no one else ever said that to me.

 

[NelliePledge]

I was given a bottle of Villa Maria Pinot Noir for Christmas by someone who doesn't know I am intolerant. It is a red wine. Funny thing is, because I don't drink I don't know how good the wine is or whether Pinot Noir is normally a red wine so I may not even of had to say red wine.

It is sitting at the bottom of a cupboard. The only way I am going to be able to drink it is to have about 5 or 6 sips every other night or more with a meal. I have a feeling from memory that I am even more intolerant to red wine.

That’s a decent wine. Pinot noir is a lighter red. Maybe regift it. You could use it to make a casserole if you eat chicken or beef.