Alcohol Tolerance Poll

[Allyson]

About 2.5 years ago, I began experiencing immediate and debilitating migraines after even the tiniest amount of alcohol. In hindsight, it seems this was one of the first insidious symptoms for me.

Not being a glutton for punishment, I stopped drinking alcohol altogether for over a year, but in the past few months I have mostly gotten away with a very rare half glass of white wine. If I do get a headache, it's not the raging migraine I experienced at first. I was never a big drinker, so it's not a great loss, but I do miss the occasional glass of really good beer. Ah well, since I've developed a gluten intolerance also, that's off the table anyway. Booo.

there is gluten fre beer availablel Moxie - did you get the guten intolerrance tested or self- diagnose may i ask?


cheers

 

[Allyson]

I used to get sick from the sun, but not so much at all after getting CFS-sick.

Calcium, huh? I used to regularly have turnip greens, but now I have an aversion to them. Maybe calcium is bad because it lowers (or blocks absorption of) magnesium? Thanks, that's something for me to mull over, as to why I avoid greens anymore (but not green vegetables like broccoli). I'd been guessing it was the oxylates in the greens, maybe that's wrong.

And no need for apologizing Anecdotal reports can have more value than studies, when talking about such a nebulous thing as CFS.

broccoli is bad for our IBS a/c to low FODMAPS diet guideline sSHerlock - high fructos e - to glucose ratio porcduces the damaging gases.

sick form the sun - ?may have been due to the heat and the vasodialtaion that causes rather thatn the sun itself?

cheers.


Ally

 

[Allyson]

I tend to get a very hot and flushed face after a drink or two, but it wears off. I am able to cope with a good binge on occasion without much in the way of adverse effects.

i get htat form wine with additives sometimes - you can get wine without.

or it may be rosacea? I have that - took doxycycline for it and not sure if ti has gone yet.

good binge - lucky you - would knock me sideways... luckily i am content with a glass very occasionally

 

[Moxie]

there is gluten fre beer availablel Moxie - did you get the guten intolerrance tested or self- diagnose may i ask?


cheers

I haven't found a gf beer I really enjoy yet but confess I only tried a couple before turning up my nose. I don't drink very often at all these days, but when I do, I mostly stick with a light white wine. One of my favorite local restaurants has hard cider on draft, and I'll have that on occasion, too.

I'm self-dx'd with the gluten intolerance with repeated challenges. Every time I eat it, I regret it. My first gf trial led me to think gluten wasn't my problem, then I took away both gluten and dairy together and that mostly did the trick.

I can see the logic in the EDS being the cause of alcohol intolerance, but why so acute? Not that I ever drank heavily, but I used to be able to have a drink or 2 (or 3).

 

[Moxie]

so following the logic of the above post you may be ablt to tolerate some alcohol if you

1 stay cool - take off excess clothing ( always makes for a fun night ) and maybe put on a chill pack -(? the ice bucket perhaps lol)

2 lie down for preferance during and after drinking or at least sit not stand and not on a high stool - dangling legs are a no-no for EDS - no muscle movement to pump the blood up that long distance

3 Hydrate ( and take electrolytes) well, before and after - coconut water chasers anyone?

4 take B vitmins - IM B12? at some point

Worth a shot...

Hmmm..y'know I did enjoy a couple of pina coladas in a pool in Mexico a couple months ago without repercussion...

I always, always make sure to hydrate well if I have any alcohol at all, and I take Bvits routinely because I'm deficient. Interesting!

 

[Allyson]

I haven't found a gf beer I really enjoy yet but confess I only tried a couple before turning up my nose. I don't drink very often at all these days, but when I do, I mostly stick with a light white wine. One of my favorite local restaurants has hard cider on draft, and I'll have that on occasion, too.

I'm self-dx'd with the gluten intolerance with repeated challenges. Every time I eat it, I regret it. My first gf trial led me to think gluten wasn't my problem, then I took away both gluten and dairy together and that mostly did the trick.

I can see the logic in the EDS being the cause of alcohol intolerance, but why so acute? Not that I ever drank heavily, but I used to be able to have a drink or 2 (or 3).

HI Moxie .. the reaon it is sso acute is that we are already compromised and struggling to maitain full circulation so aas soon as you add any vasodilator such as heat or alcol=hol or exercise ( blood goes tot the surface to cool you so less avaailable for core) then we are in big trouble. Air travel has the same effect with bells on- and that is hther reason even normals get very drunk easily on a plane - ie with less alcohol thatn they would need for smae effect onn earth. .

Might explain why some people are two pot screamers?

re te dairy - have you done a lactose challenge ? easy to do at home and wil tell you for sure.

best

ALly

 

[Moxie]

HI Moxie .. the reaon it is sso acute is that we are already compromised and struggling to maitain full circulation so aas soon as you add any vasodilator such as heat or alcol=hol or exercise ( blood goes tot the surface to cool you so less avaailable for core) then we are in big trouble. Air travel has the same effect with bells on- and that is hther reason even normals get very drunk easily on a plane - ie with less alcohol thatn they would need for smae effect onn earth. .

Might explain why some people are two pot screamers?

re te dairy - have you done a lactose challenge ? easy to do at home and wil tell you for sure.

best

ALly

Hi Ally, to clarify, I meant why is the onset of alcohol intolerance so acute - not the onset of symptoms once I drink alcohol - I totally get the physiological effects of alcohol. I used to tolerate it before I became ill, though. To me, that would imply that the cause of the intolerance is something new (CFS), rather than something genetic and lifelong like EDS. I don't fit any of the EDS major criteria and don't believe it factors for me, but thanks for the information. My husband on the other hand..I think he probably does have a mild case. (Yet he can drink like nobody's business when he wants to..how unfair. )

 

[Valentijn]

HI Moxie .. the reaon it is sso acute is that we are already compromised and struggling to maitain full circulation so aas soon as you add any vasodilator such as heat or alcol=hol or exercise ( blood goes tot the surface to cool you so less avaailable for core) then we are in big trouble. Air travel has the same effect with bells on- and that is hther reason even normals get very drunk easily on a plane - ie with less alcohol thatn they would need for smae effect onn earth

I'm doubting alcohol and air travel are causing problems by the same mechanism ... I get very unique and specific symptoms from drinking alcohol, sometimes just seconds after taking the first sip. Whereas with air travel my problem is a combination of PEM + OI. Airports really are hell without a wheelchair.

 

[Allyson]

Hi Ally, to clarify, I meant why is the onset of alcohol intolerance so acute - not the onset of symptoms once I drink alcohol - I totally get the physiological effects of alcohol. I used to tolerate it before I became ill, though. To me, that would imply that the cause of the intolerance is something new (CFS), rather than something genetic and lifelong like EDS. I don't fit any of the EDS major criteria and don't believe it factors for me, but thanks for the information. My husband on the other hand..I think he probably does have a mild case. (Yet he can drink like nobody's business when he wants to..how unfair. )

HI Moxie,

good question. For me, i am not sure that it was " acute" though i was not always aware of it.

How do you compare how you feel - sober or after one drink or two - with how someone else feels.?

(Why do the symptoms of EDS often start to manifest later in life rather than earlier? Lots of gentic inlnnesses do not manifest - or at least ar not noticed til later in life - Parkinsons MS Lou Gehrigs etc.
I am not sure on this have never asked an expert but from the mid 20 on it is generally a downhill form peak for most people's bodies. So we lose mucsle tone and skin tone; possibly - this is just a total guess most of this par - something like flying might exacerbate it by causing an incident of larger thatn mormal vasodialtaion and pooliing that stretches the major blood vessels out of shape. WHy do varicose veins only appear later in life .. and most arthritis? Skin decreases in taughtness as we age, maybe all connective tissue surfferst to some degree too? )

I have always got drunk fairly quicklly if i took alcohol. I always used to detest afternoon summer barbeques where you sit outside in the heat drinking alcohol - but i never knew why. At the beach my favorite activity would be sitting in the water in the shade on a flotation device - i hate lying on the beach "sunbaking". The only time i have drunk on a regular basis was the only time i hed a sendentary office job for about 8 months - thought even than i had troubel sitting at a desk for any lenght of time. But i would come home and have brandy and dry - or two; and noted that made me feel good. SO i suppose here that the inebriating effects of alcohol overrule your negative toerance - ie alcohol might vasodilate you so you feel bad or faint but you get drunk at the same time so you don not notice or care. Any way a friend said to me when iasked that two drinks a day was enough to turn you into an alcoholic so i just stopped; and i had to leave that job for unknown reason - I just could not cope with the hours and posture.

More soon i have run out of puff..... but also I suppose a lot of illnesses - even gentic ones - do not start til later in life; It has not been proven that ME is viral or contagious or what causes it - we just do not know with any certainty alas. If gentic testing improves in the next few years we may soon find out however, at least if it is genetic or not.
I suppose EDS research could feed into it as it has known gentetic cause so you could ask.

I saw a new clip last night on how an early test for Parkinson s has been develped at Flinders University SOuth Australia; One early sufferer had been diagnosed and dismissed with - yep , anxiety, but this new test picks up very early signs so treatment can start earlier.. DR ROB....somthing - i remebered the name carefully for a friend who has Parkys but have forgotten the last name.

cheers
Ally

 

[Allyson]

Hi Ally, to clarify, I meant why is the onset of alcohol intolerance so acute - not the onset of symptoms once I drink alcohol - I totally get the physiological effects of alcohol. I used to tolerate it before I became ill, though. To me, that would imply that the cause of the intolerance is something new (CFS), rather than something genetic and lifelong like EDS. I don't fit any of the EDS major criteria and don't believe it factors for me, but thanks for the information. My husband on the other hand..I think he probably does have a mild case. (Yet he can drink like nobody's business when he wants to..how unfair. )

Another posiblity is - if it si a gentic disease - epigenetic reasons
as i undesrtand it in simplified form
some enironmental trigger can cause a gene to switch on

My specialist asked if I had ever fainted - yes at 12
had migraines - yes at 18

these are - I now know - typical indicators of EDS ( at these ages) but I had never connected them nor noted any fatigue before the migraines started.

but if it is mild reduction in energy you may not be aware of it - you cannot know how other people feel to compare yourself..do you get innebriated more easily than others? How do you compare this?

The poll answer seem to indicate poor tolerance of alcohol in ME and i think it is an acknowledged symptom of both ME and EDS ....but EDS has an expanation for why it should occur.

was just sent this article on gene changes and "cfs" which may be relevant.

http://www.research1st.com/2012/06/12/mcgowan-riww/


cheers
Ally

 

[Allyson]

Also Moxie I am just back for the Docs

standing waiting at the desk and i feel breathless, nervous ....I always feel like this when i go out - I used to think it was the last minute rush to get there on time

but i never knew why or precisely what the feeling was

now i know it is from OI and the afffects of adrenalin secretion to try and vasoconstrict to help me stand upright - especially standing still is difficult - no muscle movement to pump the blood up for you.)

but unless someone had told me that this was i did not know that everyone did not feel that way or that it was unusual as i always felt like that

When we first start to drink alcohol in many culture the idea is to get inebrebriated quickly which is how i drank - socialy and only on a saturday night sitting out with friends at dinner etc -so you do not know the difference between how you feel and what the alcohol does to you.

(Also you are maybe drinking coffee before during or after too. - which vasoconstricts strongly and thus masks the effects of vasodiatation.)

In my case my severe symptoms started after a trip to Italy and when i stopped drininkg coffee

So maybe the constant coffee intake was masking my symptoms earliier and the airflights i had done to date had done some cumulative damage to the veins - just a guess - why do we all tend to get bad jet-lag all well.

Raises another question - I stopped coffee as it was making me shake - why did it start doing that as it does for many years when prior to that i tolerated it with no ill effect?


cheers

Ally

 

[Allyson]

I'm self-dx'd with the gluten intolerance with repeated challenges. Every time I eat it, I regret it. My first gf trial led me to think gluten wasn't my problem, then I took away both gluten and dairy together and that mostly did the trick.

.

i did this too a few years ago i was happy that gluten caused all my problems

this was pre my Me/cfs Dx


then someone said get it checked out

so i got tested for coeliac - negative

but definitely lactose intolerant - and that coauses a lot of problems if I don t take lactase with dairy

and IBS - fructose intolerant - wheih means too much gluten will not be good for you

but the gluten should not caouse the massive crashes i was getting

kept investigating tilI found out about ME/cfs and got Dx


but now i think it is right that it is the EDS /OI that acounts for all my "fatgatigue" and various crashes of energy .

If is stay lying down and eat a low FODMAPs diet my symptoms disappear entirely - until the next time i go upright for any length of time.


cheers

Ally

 

[Allyson]

I'm self-dx'd with the gluten intolerance with repeated challenges. Every time I eat it, I regret it. My first gf trial led me to think gluten wasn't my problem, then I took away both gluten and dairy together and that mostly did the trick.

.

i did ths too a few yeara ago i was happy that gluten causeda ll my problems
then someonsaid get it checked out

so i got tested for coeliac - negative

but definitely lactose intolerant - and that coauses a lot of problems if I don t take lactase with dairy

and IBS - fructose intolerant - wheih means too much gluten will not be good for you

but the gluten should not caouse the massive rashes i was getting


but now i think it is right that it is the EDS /OI that acounts for all my "fatgatigue" and various crashes of energy .

If is stay lying down and eat a low FODMAPs diet my symptoms disappear entirely - until the next time i go upright for any length of time.


cheers

Ally

 

[MeSci]

a friend said to me when iasked that two drinks a day was enough to turn you into an alcoholic

Probably only if you have a predisposition to it. I was drinking a bottle of wine a day and having brandy for breakfast for a prolonged period to cope with being stuck in a job I hated. I stopped drinking for a year after a suicide attempt, then started again more moderately. I am definitely not addicted. However, I have had different addictions. It's probably due to the chemistry of the relevant neuronal synapses. The synaptic gap may be too wide, too little neurotransmitter may be released or there may be too few receptors on the receiving neuron. Things like this can make the difference between whether or not you feel a strong need for a particular substance, and whether or not you are liable to become addicted to it.

 

[Allyson]

Probably only if you have a predisposition to it. I was drinking a bottle of wine a day and having brandy for breakfast for a prolonged period to cope with being stuck in a job I hated. I stopped drinking for a year after a suicide attempt, then started again more moderately. I am definitely not addicted. However, I have had different addictions. It's probably due to the chemistry of the relevant neuronal synapses. The synaptic gap may be too wide, too little neurotransmitter may be released or there may be too few receptors on the receiving neuron. Things like this can make the difference between whether or not you feel a strong need for a particular substance, and whether or not you are liable to become addicted to it.

Thansk Mesc; interesting - a moot point no tho as alcohol - more that a glass of wine will make me quite ill.
What wa involved in the job that you hated it? looking bck i have never been able to stick one that involve sitting or standing dtill for long periods - desk jobs; I aways resiged for no apparent reason and only stuck it iat jobs wher i had to move a lot - and preferably start late inthe day..

OT but I saw the people on this fb page all talking of the same issues we have - hard to find docs... docs who don t believe them.... ; PTs who say -" lucky you you can t work"! - People not getting diagnosed til they are in their 30s and 40s. Might be of interest for your husband.

https://www.facebook.com/messages/#!/groups/32353501203/?fref=ts


best
Ally

 

[Allyson]

.

The theory on why we get bad jetlag extends to alcohol's effect BTW

Airtravel cause these in PWME/EDS

Vasodilation due to depressurisation from altitude
plus dehydration from airconditiong
plus sitting upright for prolonged period
plus sitting STILL for prolonged period - no muscle movement to help venous return
plus hot crowded environment
plus lots of waiting around in queues and lounges

If you throw in alcohol that magnifies everything; alcohol does most of the above as well so you get a double whammy

these reasons above are why normal people get drunk more easily at altitude too - when you are dehydrated alcohol has a more potent effect.


This is also possibly why our "crashes" resemble both hangovers and jetlag...similar effects but when normal people do not get them unless they drink or fly or both.

cheers

Ally

 

[Undisclosed]

Alcohol is much more than a vasodilator. It's also cytotoxic, it interferes with normal oxygen use by the tissues, it crosses the blood brain barrier to cause immediate effects, it has effect on various enzymatic processes, etc.

Most people with ME/CFS that report increased intolerance after getting ill describe feeling 'poisoned', a small amount can cause symptoms that takes weeks to get over.

I believe the subject of overall increased sensitivities to medications, alcohol, many chemicals, as well as increased light and sound sensitivities in many with ME/CFS suggests a dysfunction within the immune system and/or the nervous system rather than dysfunction related to the circulatory system. It does however make total sense that drinking alcohol does exacerbate the symptoms of OI, it's also true that alcohol tends to exacerbate the symptoms of many illnesses.

 

[Allyson]

I am a bit less tolerant of alcohol than before ME. Like someone else, I gave it up for a year, but in my case it was after a suicide attempt and because I just didn't fancy it. Then I fancied trying it again and found I was OK, although not able to cope with the prodigious amounts I used to drink, which is probably a good thing. I've given up beer and gin and tonic due to the grain and sugar, and fortunately just at the time I realised I was going to have to ditch the G&T, which was my favourite drink, I also realised that I had gone off it! I now stick mostly to wine, with the occasional cider.

Unlike someone else, after using cannabis for many years I decided to try going without it to see if it helped to reduce my sinus problems. I don't think it made much difference, but it was having very little positive effect either so I don't miss it at all.

I tend to get a very hot and flushed face after a drink or two, but it wears off. I am able to cope with a good binge on occasion without much in the way of adverse effects.

the hot flushed face may be due to additives ?
It takes some observation but I do notice a delterious effect - esp if i am sitting up it is subtle - just a feeling of not being very happy or comfortable - i do not feel faint or feel by BPdrop or anything, i would just ater be lying down or walking.
It was not until the cause was pointed out to me that i made the link with wo i feel.

we have compony her ewho make aditie free wine and in French wine iit is often banned.

 

[Sherlock]

the hot flushed face may be due to additives ?
.

Have you heard of "Asian Flush Syndrome" aka "Asian Blush Syndrome"? It's due to a genetic deficiency of alcohol dehydrogenase (which breaks down alcohol).

 

[Sherlock]

then I took away both gluten and dairy together and that mostly did the trick.

Maybe the gluten sensitivity gave you intestinal permeability, which let the dairy proteins through the gut barrier and gave you food allergy symptoms.