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

Discussion in 'Hypersensitivity and Intolerance Reactions' started by Jonathan Edwards, Oct 30, 2024.

?

Have you had alcohol intolerance with ME/CFS and what sort?

  1. No

    13 vote(s)
    10.7%
  2. Worsened 'hangover' effect the next day

    37 vote(s)
    30.6%
  3. The taste became unpleasant

    7 vote(s)
    5.8%
  4. Just 'put off' - I don't feel like having it

    21 vote(s)
    17.4%
  5. Upset stomach - soon after

    12 vote(s)
    9.9%
  6. Aggravation of ME/CFS symptoms soon after

    60 vote(s)
    49.6%
  7. Pains elsewhere

    9 vote(s)
    7.4%
  8. Other unpleasant symptoms

    55 vote(s)
    45.5%
  9. I've been avoiding alcohol for so long now that I can't remember the symptoms that led me to avoid

    18 vote(s)
    14.9%
Multiple votes are allowed.
  1. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    9,560
    Were your liver enzymes elevated? This can be a result from many causes re non-alcoholic drinkers. Thyroid, metabolic syndrome, et I've had test results that showed my bilirubin was elevated from unknown cause.
     
  2. mango

    mango Senior Member (Voting Rights)

    Messages:
    2,799
    I checked Worsened 'hangover' effect the next day + Upset stomach - soon after + Aggravation of ME/CFS symptoms soon after + Other unpleasant symptoms.

    I can't drink more than approx 6 cl of wine nowadays. I still enjoy the taste, though.

    The first time it happened to me I was travelling solo in a south western European country, having dinner and a small glass of wine at a restaurant I hadn't visited before. I genuinely thought I might have been poisoned, but managed with very great difficulty to get back to my hotel. The symptoms eased a bit after a few hours and I fell asleep, I never called an ambulance.

    I get a very strong reaction after about 15 minutes or so, as if I've been poisoned. Extremely nauseous, super dizzy, vomiting, spaced out/lightheaded, difficulty thinking, balance issues, eyes affected too (difficulty focusing and processing), muscle weakness and shakiness, feeling as if I have an immense hangover (also very soon after, like half an hour after drinking).

    I've experienced all sorts of stomach issues while travelling before, like "Delhi belly" and "Pharaoh's Revenge" and all those things. But my reaction to alcohol was something completely different.

    The intense poisoned feeling lasts a few hours, and the "hangover" effect continues to the next day with added PEM beginning after 24-48 hours. If I remember correctly, it's been many years now. I didn't realize it was alcohol intolerance, until the second time it happened.

    I never had a hangover before ME.
     
  3. Sasha

    Sasha Senior Member (Voting Rights)

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    Location:
    UK
    Timing is looking like an interesting issue.
     
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  4. EzzieD

    EzzieD Senior Member (Voting Rights)

    Messages:
    611
    Location:
    UK
    It showed an abnormally high GGT. Bilirubin and everything else on the test (ALT, ALP, Albumin, Total Protein, Globulin) were all within normal limits. I don't know what any of it means; from reading a bit it sounds like GGT is very much to do with alcoholism, but may also be to do with viral hepatitis, and I've never had that either. It is a mystery.
     
  5. poetinsf

    poetinsf Senior Member (Voting Rights)

    Messages:
    341
    Location:
    Western US
    A quarter glass of wine used increase my head pressure and I'd get knocked out in about 30 min with debilitating fatigue. These days, I can tolerate a full glass or two.
     
  6. MrMagoo

    MrMagoo Senior Member (Voting Rights)

    Messages:
    1,192
    My recent liver etc blood results apparently normal and “show very clearly you don’t drink alcohol” thank you HCP!

    I did have a strange phase when mild, ahead of a crash I was craving Gin & Tonic, and Chinese noodles (both of which I hate).
     
  7. Florence

    Florence Senior Member (Voting Rights)

    Messages:
    129
    Location:
    London, UK
    I've had intolerance to alcohol ever since developing ME/CFS. Prior to getting ill I could drink moderately without problems.

    My intolerance means that even after drinking half a glass of wine I will develop large, red, itchy hives the following day. These are usually on the chest or stomach and resolve within 24 hours.

    I have had ME for more than twenty years and stopped drinking alcohol altogether years ago because of these symptoms so cannot confirm that I still have this intolerance, though I assume that I do.
     
  8. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    4,081
    I have never particularly enjoyed the taste of alcohol, and have always reacted badly to too much alcohol. The last time I over indulged was over forty years ago when I ended up vomiting for some sixteen hours such that my throat was bleeding. But I could drink moderately prior to ME without any issues. Interestingly my family tree over some two hundred years indicates a problematic relationship with alcohol for alternative generations, including some dying of such as liver failure, in contrast the intervening generations being tea-total. (By this pattern I am the teetotal generation.)

    So by the time I developed ME I only ever drank very small amounts and only in social situations. Post onset the first couple of times I had half a glass of red wine I came out in a rash, then a glass of wine or some shandy would always be followed by PEM the next day, but it was hard to know how much was down to the wine and how much the exertion of the social situation. A bottle of wheat beer on one occasion was followed by a migraine, but was this a gluten issue as my gluten intolerance is consistent unlike any alcohol intolerance?

    So I say I am alcohol intolerant, and now only ever drink a couple of mouthfuls of champagne during toasts at the rare family events I attend, but given the variability of my response to alcohol I can not be certain that this is true.
     
  9. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,374
    Location:
    Aotearoa New Zealand
    I ticked the 'just put off - don't feel like having it' box.

    I haven't drunk much alcohol since I became ill. I don't think it makes me more ill, but I haven't really monitored that well. I will have to experiment!

    In a 'correlation is not causation' consideration, at least for those people with ME/CFS who don't clearly have a bad reaction to alcohol, I think it is worth mentioning that for social drinkers, the opportunities to have a drink are much reduced for many people with ME/CFS. Sitting alone at home with a drink feels perilously close to drowning one's sorrows, and that rather takes the shine off it. There's also the cost - when you don't have much of an income, alcohol is not a priority expense. And, as the years have gone on and I've put on some weight, the pleasure versus the empty calories rarely seems worth it. And I sometimes get asthma from the sulphites in wine...

    I like beer and will have a glass now and then, even on my own, for the taste. Although that is usually at night, so perhaps if it caused symptoms, I wouldn't notice so much, and it's not a lot of alcohol. And occasionally some wine at social events, and there I would have attributed the PEM that follows to the various exertions involved.
     
    Last edited: Oct 30, 2024
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  10. Simon M

    Simon M Senior Member (Voting Rights)

    Messages:
    995
    Location:
    UK
    I’ve always been struck by how this was a strange and pretty common symptom. It doesn’t seem important in its own right, but maybe it tells us something important.

    my answer of “other unpleasant symptoms”, isn’t very informative.

    What I actually experience is a hangover coming on pretty fast, half an hour or so. Not the next day.

    Though I do have a safe threshold of maybe a quarter of a glass. And I only feel tempted on a good day. That’s a 1970s/80s size wine glass, 6 to a bottle.
     
  11. MeSci

    MeSci Senior Member (Voting Rights)

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    Location:
    Cornwall, UK
    I'd not heard of these, so looked it up - interesting.
     
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  12. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    4,896
    Location:
    Cornwall, UK
    I used to drink a lot, and carried on when I had ME, until I couldn't any more. I just have a small glass of wine each evening now. Can't drink beer any more because of gluten. I suppose I could buy gluten-free beer but I'm happy to stick to the (made from kit, so very cheap!) wine.
     
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  13. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    3,734
    I've had ME/CFS a long time and although I had drunk before I had it I was young so who knows what some experiences 'would have been' if I hadn't had it and aging etc. although I do have family members and peers to compare certain things to

    Having said that the starkest thing of all is the different 'types' of alcohol. e.g. I've never been able to even sip/toast champagne as I get immediately slurring words drunk, and wine isn't much better from much more - it is weird and so fast it is more like an allergy even though no allergy symptoms. Game over, no point. I have been able to eg drink some spirits particularly with loads of mixer or maybe alcopop type things. I'm near certain this wasn't a practice thing that made this vast difference.

    There is a vast difference for me however between when my illness, or any other illness is 'live' (I'm on a downhill vs it's 'constant') as to whether I would touch it at all, which can mean pretty much years at a time sometimes. I guess much of that is that at that point I'm hoping it's just a 'relapse' but also I'd find it would just make me go to sleep and I wouldn't fancy it. And if I did then it wouldn't have the same effect just increase the sleepiness etc. So throughout my life I've had huge swathes of time when I just wouldn't have touched it because innately it didn't make sense. Like when I had glandular fever for ages. Or if I had another whatever illness.

    I did have days where I did 'big nights out' (still heeding these rules on type of alcohol) and my hangovers were couldn't move, banging head, rheumatic, aches absolutely everywhere (although of course I was also probably doing things as I didn't know about PEM for most of this) - and I know everyone gets them but mine were markedly different to others and lasted days, often swollen glands too. And in fact I'd 'get properly ill' a lot from nights out, as others would perceive it ie what seemed to be fully blown eg tonsilitis.

    On the other hand if I'm really particular about the what and amount etc then when it's not 'live' ME-wise and there's nothing else eg another illness a few well diluted spirits I might be OK, heck it might even come with benefits like relax aches a bit at the time. Tip that invisible line and the next day I will get in particular very painful rheumatic aches all up arms from wrists and ankles and feeling everywhere in joints and muscles as well as it exacerbating the 'bad day' ME stuff re: bed-bound and communication etc. There might be other things I'm forgetting because you know, ME symptoms as they are anyway (migraines etc) but that's the weird distinctive one.

    I think, but I didn't for example have whilst I was working even thought about having one on a weekday because I'd invariably have been collapsing into bed when I got home with exhaustion anyway, but also the mission of trying to get a broken body to somehow get up and into work when logically it wasn't in a fit state anyway didn't need anything else adding into the mix. But at the weekend certainly for one night I'd often go very locally to a pub or someone's house and sit down and have a few noting all these limits, normally starting later than most having had a big 'disco nap' before. I might have felt rotten sometimes after but I guess by then I had an intuitive sense of limits and 'built-in' that I'd be in bed feeling rotten and having to rest due to ME exhaustion anyway, and recovery for the week - I'd never for years have been able to do anything real getting out of the house doing a trip etc at the weekends, only if I had a week or more of annual leave.
     
    Last edited: Oct 30, 2024
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  14. AliceLily

    AliceLily Senior Member (Voting Rights)

    Messages:
    1,809
    I voted 'worsened hangover effect'. From memory, I feel more dehydrated.

    I was given a bottle of wine at Christmas last year and it is still sitting in the fridge over three quarters fill. I've only had 3-4 sips with a meal about 4 times and then lost all interest.
     
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  15. hibiscuswahine

    hibiscuswahine Senior Member (Voting Rights)

    Messages:
    564
    Location:
    Aotearoa New Zealand
    I have met clients with clinical alcohol intolerance due to a genetic defect in the aldehyde dehydrogenase enzyme. They show facial flushing and rapidly become nauseous, faint, headaches etc. The flushing is very obvious to others and they usually never drink again.

    I was able to drink alcohol for many years with ME but over the last decade, it started to make me drunk much quicker, interrupted my sleep and had rougher hangovers with pain, fatigue, cognitively less with it (?PEM) over the next day which impacted on my ability to function which is already much lower due to ME. So any of the pleasant effects of alcohol was not worth it. So gave it up and not missed it at all.

    I suspect that my "unpleasant symptoms" as voted for in the poll, is more to do with my aging brain and liver. I have noticed a lot of other friends in their 50's giving up due to the deleterious effects of alcohol.

    Edited to add - from my training, one of the exclusionary conditions for the diagnosis of ME/CFS was alcohol abuse as this can cause similar symptoms to ME (cognitive, pain, fatigue) and should be ruled out in the diagnostic work-up.
     
    Last edited: Oct 30, 2024
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  16. hotblack

    hotblack Senior Member (Voting Rights)

    Messages:
    347
    Location:
    UK
    That could be a good way of putting it. Maybe what I experienced was not worsening of ME symptoms but an instant hangover, which I guess could itself (like so many things do) make ME symptoms worse? I just bundle everything that didn’t happen to me pre ME as an ME symptom.

    It’s been probably close to a decade now so difficult to remember. The longest sober period in my life! (There’s some irony here but that’s another story for another time).
     
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  17. Holinger

    Holinger Established Member

    Messages:
    19
    Location:
    Melbourne Australia
    A good discussion. Surely there has to be something in that as i don’t really know of another disorder where alcohol makes you feel shocking. I like the taste with food but about an hour later I feel like I’ve downed a few Periactin tablets. If I have more than a tiny amount I feel poisoned for days. This is only a post me/cfs thing as between 17-19 I was a normal Australian drinker.
     
    Last edited: Oct 30, 2024
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  18. wingate

    wingate Senior Member (Voting Rights)

    Messages:
    204
    Drinking alcohol seems to make my OI worse. I also tend to have worse sleep on nights where I’ve had alcohol, especially in the evening.

    Sometimes it feels like the effect of the alcohol hits me much quicker than it used to, for instance, after a number of sips versus after a drink.
     
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  19. MrMagoo

    MrMagoo Senior Member (Voting Rights)

    Messages:
    1,192
    Trip is a well known brand available in most supermarkets. I couldn’t manage a whole one at first. Now I’ve graduated to the hard stuff - CBD and caffeine Medahuman. It actually makes me “drunk”.

    I used to like beer and AF beer, but again can’t bear the taste any more.
     
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  20. forestglip

    forestglip Senior Member (Voting Rights)

    Messages:
    874
    Since ME/CFS started, I've only drank alcohol a few times. I remember one time in college I drank probably two or three shots, and I became very sick. Not vomiting or nauseous, but just a very lousy, fatigued feeling. Almost immediately after drinking, I curled up in bed instead of socializing. And I distinctly remember someone telling me I looked green.

    But I don't think I've had such bad reactions the other few times. Most of the other times were beer, not liquor, though.

    Two reasons I don't drink at all now:

    1. It doesn't have much of an effect. Maybe a little more relaxed.

    2. I don't want to risk my mental health getting worse long term for a few hours of relaxation. I've got significant anxiety. With drugs that make you feel better mentally, I think there's always a chance of a tolerance/adaptation effect long term. That was the case for me with cannabis. Even if one night of drinking only reduced my mood for several months by 0.1%, I need all the mood I can get, so I don't even risk that effect.

    Edit: I guess I'll put Other Symptoms since the question seems to be asking if alcohol intolerance has ever happened, which it did that one time. For all I know, it might have been a bad batch of liquor though. Although no one else had that experience from that bottle.
     
    Last edited: Oct 30, 2024
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