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

All my Asian friends get that 'flush' from alcohol intolerance.

 

Funny how people know you have ME/CFS but they give you alcohol as a present.

 

I was given a stairmaster as a gift years ago because I was unable to go out for walks

 

A friend of mine. I had mentioned often to her that every now and again I get the urge to have a wine with a meal but that I am so intolerant that I don't buy any. So she bought me one to have a few sips.

 

I'd love to sip on a few old favourite'
s from my youth again.

Drambuie, maybe try a sherry again, kahlua etc.

 

Hitting just the right amount makes some of my symptoms easier to endure, especially lessens pain. At family events for example it's a good way to be able to chat. But that amount is small, going over it is awful, and I feel awful afterward, generally for a few days.

No excessive reaction, but I feel a kind of 'poisoned' feeling, intense malaise basically. I mostly stopped.

One notable thing is when I used to wear a heart monitor, my heart rate during the night would be elevated, up to the 90s.

 

My experience with alcohol was that when I was mild, I got drunk very, very easily - 1 small beer or bottle of cider would do the trick. I liked that, because nights out were much cheaper for me than for others.

At moderate, half a small beer would make me feel like I'd been poisoned, and I'd get the overwhelming urge to retreat from the situation and lay down until the feeling passed. I would describe it similarly to the way Jonathan has been trying to pin down the ME/CFS need to be horizontal sometimes. It would also come with feeling 'stupid' (like my brain couldn't make connections or put together a complex utterance) and a sense of pressure in the head, but not quite a headache.

 

Thank you for asking this question.

Interestingly after years of not drinking and exclusion diets, then resuming drinking again in the noughties - I was fine and could drink with no issues for a short while anyway!

I’ve had various relationships with alcohol depending on how unwell I have been over the just over three decades I’ve been unwell. I have either been fairly ok with a horrible hangover - exacerbating my usual symptoms; feeling like my body had been poisoned pain wise mostly, or experienced an allergic like reaction where I would vomit the entire next day until it felt like the allergen had left my body.

I realised at some point this would be around menstruation so I wonder now if this was possibly connected to MCAS. First time this happened was the first realisation I couldn’t really drink anymore, but because it didn’t happen very frequently and there seemed to be no rhyme or reason that I was aware of at the time, I continued to drink and if that didn’t happen I would often have experiences where I drank no more than usual but it affected me way more in a Kim Basinger blind date kind of way.

I got really sick with MCAS in 2017 and allergic to so many things so I have no intention of trying anything alcoholic again until I’m fixed. The thought of drinking alcohol whilst being so unwell… no thanks!

I wonder if alcohol allergies are MCAS related. When I had the initial reaction to alcohol and became too unwell to work, I was living in a mouldy basement. Perfect conditions to trigger MCAS, although I have a long list of other possible triggers too.

 

Near the beginning of my me/cfs adventure, I was in what was essentially remission. I'd been sick really acutely for about 4 months, then suddenly and spontaneouly "recovered." I could exercise. Or I could go drinking. But the combination was a cause of PEM. I learned to separate alcohol and exercise by a day or two.
I reduced my drinking over a decade as I tried to manage my symptoms. Later I realised I had to stop drinking all together.

The additive effect of alcohol and exercise for me is intriguing. I have wondered if for me, anything vasodilatory can be a cause of PEM.

There was another time I did some cold-weather exercise and then went in a spa immediately afterward, it absolutely blew me up, I see that as similar. There was also a day very early on where I had a couple of beers in the hot sun straight after exercise, and even though I was well enough to do exercise in the hot sun that day, the booze tipped me into PEM.

All these reasons make me suspect a vasomotor explanation is primary in my case of me/cfs. Another way to look at it: my me/cfs may be POTS-dominant.

A more general theory of alcohol ingestion might be that it triggers a protein misfolding system that is already on a knife-edge, so that we get the unfolded protein response.

 

It might also explain why I flush with even small amounts of alcohol. The sensation of heat isn't as severe as that I got during menopause, but the areas of skin that go a deep scarlet and feel hot to touch are the same. It's been pretty much a lifelong thing for me, though.

 

An interesting matrix to explore with a survey might be

• I have POTS symptoms, am alcohol intolerant
• I have POTS symptoms, am NOT alcohol intolerant
• I have NO POTS symptoms, am alcohol intolerant
• I have NO POTS symptoms, am NOT alcohol intolerant

 

Good suggestion, but maybe better to ask about orthostatic intolerance or dysautonomia so you don't leave out all of us with orthostatic hypotension etc?

 

The main issue for me is that alcohol causes me to get migraines and it doesn't take very much so I don't drink at all.

Edited to add:

I've had ME/CFS since I was 17 (1983). I don't know if alcohol would have still caused me to get migraines if I didn't have ME/CFS. ME/CFS made my migraine condition much worse and it is also part of my PEM symptoms.

If you were to separate my migraine condition from ME/CFS, which of course you can't, but if you could, I would say my migraines are worse than ME/CFS even though I am severe and bedridden because uncontrolled migraines are a reason I could see for killing myself. ME/CFS at this point isn't.

 

Short (currently) Reddit thread today with people describing that alcohol helps, reducing PEM.

 

Can I ask what you are meaning by MCAS, @Arisoned ? My understanding is that MCAS is supposed to be a term for presumed mast cell activation that is not allergen related - i.e. not standard allergy. I am also unclear as to quite what symptoms it is supposed to have. I think allergy to alcohol would be surprising since it is not in itself an antigen recognisable by mast cells. It could possibly act like a hapten does but I have never heard of evidence for that.

All these stories are useful but the more they are described directly in symptom terms rather than presumed mechanisms the more it helps me. The idea is to try to work out if there are mechanisms in ME/CFS that people have not thought of or misinterpreted.

Similarly, I would prefer to keep away from description in terms of POTS symptoms because recent discussions suggest that symptoms said to be associated with postural tachycardia may not actually have much to do with the POT itself.

The stories are beginning to show some patterns but I will defer any thoughts on that until everyone has had a chance to vote. I don't want to bias people!

 

I wonder could all this not just be explained by being unwell in whatever way a person might be affected, differently for everyone, and consuming something toxic and that being a bit much for a sickly body and provoking some extra symptoms or intensifying the standard ones. Also seems maybe we get dehydrated pretty easily lots of reports of people drinking more water than pre illness.

I have known people who found alcohol really helpful.


I look forward to the verdict.

 

I forgot to say that I sometimes get a stuffy/runny nose and aches or pain in my cheek/lower forehead, on the left.

On the occasions where I feel OK after one, maybe two small glasses of red, I feel tipsy and enjoy it and feel energetic and happy.

Any more than tipsy always makes me feel awful immediately (all symptoms described here and in my previous comment) and I get a hangover, can't say much more about that because it has been too long since I tested it.

 

Same results from alcohol as pre-ME but from a third of the quantity.

Possibly worse destabilisation of vestibular function and worse hangover effects. I recall it made me feel more woozy and hangovery at the time the ME started in 1986.

After ME onset I was glad to have been given a special license for the initiation to join the "hoods" rowing club within a club at my college, comprised of of tragic/heroic rowing failures (we lost the headship i.e. leading position in the college races) by drinking 8 pints of orange juice and lemonade instead of 8 pints of guinness.

The undergrad community of my college quietly recognised there was something very wrong with me, knew enough from received wisdom about such matters to recognise alcohol was not recommended and were kind enough to respond appropriately. Even the provost was sympathetic and gave me an extra year to complete my degree just from looking at me! Though at the same time medical officialdom in the form of doctors denied my symptoms existed and could not offer a diagnosis.

I still take the occasional dram of drambuie. It has medicinal value in calming febrile hyperactive nervous mentation and the after effects are not as unpleasant as straight whiskey or brandy which tend to have an excitatory effect the following day but its not recommended repeatedly or in excess as it makes me clumsy and lacking in perspicacity. Plus it only takes a tiny amount, about one measure i.e. 25ml and that is plenty.

 

Alcohol makes no difference to my ME symptoms. I can't drink as much as I used to for the same effect but I put that down to aging.

 

My alcohol intolerance is that I get a hangover effect from just a sip, directly and also a poisoned feeling. (I did not vote because it is immediate, not delayed).

I have also developed a lactose and fructose intolerance since I got ill.

Could this combo be related?

Could this combo mean the liver is somehow malfunctioning?

There was an it-researcher that hypothesized that maybe the liver was involved.

Edit; before I got ill, I drank alcohol moderately and rarely had hangovers. Also ate loads of fruit without issue.