Better with alcohol

[AndyPandy]

In australia, there was a footballer who had cfs, the only way he could sleep was to drink, not to get drunk but just a couple to relax. He was a high profile person here, so he said he use to have different liquor stores mapped out that he would use so he wouldnt be seen at the same one all the time and not get a reputation as an alcoholic.

I think it was dr bell who wrote an article on pots/oi and how narcotic pain killers seem to help some with this issue. I can recall the ins and outs of it, but maybe its a similar situation with alcohol for some.

I find drinking hit and miss, usually a miss in that it makes me feel like crap. Dam i miss a good drinking session and watching the sun come up while sitting around a fire.

It was Alastair Lynch former AFL player and I think he used to drink Baileys or sometimes vodka to help him sleep. I recently read his book which contained this information.

Sadly, I am now acutely intolerant to alcohol due to ME.

 

[Gingergrrl]

Interesting thread and since CFS, I have become acutely intolerant of both caffeine and alcohol. They both affect my tachycardia, blood volume, sleep, and interact with other meds. Prior to CFS, I used to drink coffee every morning and I was a social drinker where I could have a glass of wine or mixed drink in a restaurant and be fine. Now my body has absolutely zero tolerance for both!

 

[Valentijn]

Alcohol intolerance is almost universal among ME/CFS patients. One swallow, and I feel pretty bad.

 

[taniaaust1]

Funnily enough I just got an e-mail updating Dr My-hills website, she questions whether a negative reaction to alcohol could be a marker for ME.
I can't tolerate even one drop.

At one point they almost put alcohol intollerence into the diagnostic criteria due to its almost universal that we have alcohol intollerence. So hence I'd query if someone has the same disease as I do if they could drink this and feel better from it.

edit @Valentijn great minds post alike (I just saw your post after I'd posted).

 

[maryb]

@deleder2k
I've just got up and feeling rough after a bad night......so I apologise for my sensitivity.
Not all of us British like Magaluf

 

[Helen]

I have low somewhat low blood pressure. Never tried tilt table test, but I get dizzy sometimes when sitting up. Especially when I wake in the morning. Started with propranolol 4 weeks ago. It works. It also relieves me of high pulse rate which I get sometimes.

Doesn´t propranolol lower the high puls that is functional with your low blood pressure as the body compensate for a low blood pressure with an increase in heart rate? Did you try anything to raise your blood pressure, as salt, liquorice or medication? Adrenal insufficiency? Just some thoughts.

 

[deleder2k]

Got word from my doctor that I need to increase my salt intake. Not quite sure how to do this... I could just apply more salt when I eat, but I'm not sure if that is enough. What about mixing a few spoons of salt and tap water?

 

[Helen]

I think any way is OK, but just as a trial. As you have a doctor appointment soon I guess she/he can take a closer look at your electrolytes, blood volume, blood pressure and others. I recommend borrowing or buying a blood pressure meter, if possible, to keep track of the effects. Good facts to bring to a doctor...
Liquorice inhibts the breakdown of cortisol so it is quite useful to take too - another day, also as a test, to see what happens if your cortisol level increases. Cortisol affects the blood pressure among other effects.
Could the vasodilating effect from alcohool be what helps you?

 

[maryb]

propranolol was the drug from hell for me......I was put on it after being admitted to hospital......no-one told me. I/my husband kept telling the nurses I felt ill (realised it was after taking this) their response just sit down until you feel better. Have they really got time for patients???
I weaned myself off those little beads from hell over 2 weeks, counting them down.
My doctor said I couldn't just stop them WTH. I now know all my head symptoms are related to neurolyme.
Sorry once I start on the NHS I can't stop...back to alcohol

 

[justy]

I cant touch a drop. When I could drink I found that after a couple of sips of red wine I would get severe pain in my legs which would go after a few minutes.

Really miss a nice large glass of red wine at the end of the day - preferably a Rioja or Chianti - None of that Australian wine for me, even when well - have you seen the amount of alcohol in the 'New World Wines'?

 

[justy]

Here is the article by Dr Myhill

http://www.drmyhill.co.uk/wiki/Alco...ves_us_a_clue_as_to_the_mechanisms_of_fatigue

She says at the end

Recovery from CFS/ME is often accompanied by alcohol tolerance. Phew! What a relief! Perhaps we should be using this as a test?

And I say thank god for that!
Actually last year, after a couple of months on Armour I had a great summer and even started to be able to tolerate a small amount of alcohol - just a small glass of a wine that was about 8 - 10% and it was lovely to feel a bit normal again.

Right now I am so sick I cant imagine even wanting to add alcohol into the mix - my brain hurts, I am foggy, my stomach aches all the time and I already wake up feeling like I have a hangover!

 

[Sidereal]

Even one sip of alcohol makes me feel very sick/poisoned. Severe alcohol intolerance in CFS has been known since the early days. I remember reading about it in Osler's Web.

 

[Valentijn]

Really miss a nice large glass of red wine at the end of the day - preferably a Rioja or Chianti - None of that Australian wine for me, even when well - have you seen the amount of alcohol in the 'New World Wines'?

I liked Sake ... there was something in most grape wines which I rather disliked, primarily regarding flavor.

 

[Hanna]

Can't stand alcohol either. Regular wine gives me terrible muscle pain. Organic red wine without bi-sulfite is slighly more tolerated but no more than one half glass.

 

[Iquitos]

At one point they almost put alcohol intollerence into the diagnostic criteria due to its almost universal that we have alcohol intollerence. So hence I'd query if someone has the same disease as I do if they could drink this and feel better from it.

edit @Valentijn great minds post alike (I just saw your post after I'd posted).

I was alcohol intolerant for the first 30 years of my ME. It's only since I've been using medical cannabis that I am no longer alcohol intolerant.

People may react differently depending on disease progression or disease treatment.

 

[Gingergrrl]

Got word from my doctor that I need to increase my salt intake. Not quite sure how to do this... I could just apply more salt when I eat, but I'm not sure if that is enough. What about mixing a few spoons of salt and tap water?

I use a tablet called "Salt Stick" that my husband buys at a local bike shop but I believe you can also order on-line. I also add a lot of salt to everything I eat (sea salt not table salt) and take a tiny dose of Florinef and drink extra water. I also take potassium and magnesium and sometimes Nuun electrolyte tablets that you mix with water. Someone (I think my ND?) said not to take Licorice if you are taking Florinef so I have never actually tried the Licorice supplement. Hope this helps. Almost forgot, I take Atenolol for the tachycardia which is the most helpful of everything.

 

[acer2000]

Total guess here, but Alcohol can have a sedative effect on the nervous system. In that sense, I guess maybe it might help OI because in some (maybe all) people OI can actually be an over-reaction to the stimulation of the sympathetic nervous system.

See: http://en.wikipedia.org/wiki/Vasovagal_response

In my experience, even small amounts of alcohol make me feel pretty terrible in short order.

 

[NK17]

Alcohol has always been a total killer for me. I grew up in Italy and one of my grandfathers was a wine connoisseur, he used to bottle his own wines. Back then it was common to give a little wine to young adults and all my cousins seemed to tolerate it well. My immediate reaction was heavy and painful legs, increase in brain fog and overwhelming malaise. Needless to say I've never got drunk in my life. With beer it was a bit different, I really enjoyed the heavy creamy irish one, maybe its large content of yeast and b vitamins might have made it more tolerable in my early twenties.

I've always naturally craved salty foods, since my early childhood and frequently recurred to a tall glass of water to feel better. I was also a voracious eater of licorice candies, my grandma couldn't believe that such a young child could like the strong taste of pure licorice (I also chewed on licorice root sticks).

I'm now addicted to olive oil and sea salt chips, they are my to go to snack. Not the healthiest snack, but I still need some guilty pleasures . Still have to get to like kale chips ...

 

[cigana]

what is OI?
Do you have CFS/ME also?
Reason I ask, I seem to improve CFS when i drink a few beers, weird as it sounds, it improves my energy next day

That is weird you should say that, because I've noticed the same...it improves my energy the next day!

 

[deleder2k]

I talked to one of the doctors engaged in the Rituximab study at Haukeland yesterday. She said that another patient gets better with alcohol too. They found it very interesting. I was told that they probably would do some sort of gene analysis on both of us!