Caffeine: helps, hurts or makes no difference?

[me/cfs 27931]

@Webdog I have 2 unrelated questions for you : what do you mean by " 2-3 hour wake-up period " ? Do you mean you sleep 21 hours per day ?

Why are you diagnosed 84%-91 % ? Just curious, these are very precise numbers, and why not completely diagnosed ?

@Dechi It takes me about 2-3 hours from the time I wake up to being "fully awake". I'm in a hazy mental fog during the transition.

I'm diagnosed 100%. But according to the 2015 Institute of Medicine report, 84%-91% of ME/CFS sufferers in the US are undiagnosed.

An estimated 84 to 91 percent of patients affected by the condition are not yet diagnosed (Jason et al., 2006b; Solomon and Reeves, 2004), and people with ME/CFS often struggle with their illness for years before receiving a diagnosis.

https://www.ncbi.nlm.nih.gov/books/NBK284905/

 

[HowToEscape?]

In moderation it seems to be helpful; I'll get a brief window of feeling better, then a longer window of being somewhat above zombie status. Since I was going to be stumbling around in a useless fog anyway, whatever additional knockdown it causes later in the day in not a problem, because that was going to be useless time being incapacitated anyway. BUT, if I have it when I'm really flat, then it just prevents a required nap while providing no benefits. Also, no coffee after noon, or sleep is (even more) problematic than usual.

YMMV, ya gotta experiment for yourself. If you want to try, start with one cup, and that's normal drinking cup not a pint's worth.... though I suspect anyone posting here already knows that ;-)

Properly made coffee (it's kind of a pain to do) actually tastes good. No cream no sugar needed, and it will have actual flavor notes.

 

[IreneF]

I love coffee, I drink 2-3 cups every day, never more than 4. It's one of the few things that really helps, esp. w/ headaches and brain fog. It's been used as a headache remedy for decades.

I think you'll know very quickly if it doesn't agree with you.

I grew up in a family of coffee drinkers, and I've been drinking it since I was 15.

 

[KristenSF]

I make two cups in the morning out of habit and because I love the smell and taste of it, and the ritual of having hot coffee first thing. I usually end up drinking just 1-1/2 cups though. I think I've become immune to the effects of caffeine.

My fatigue has intensified so much over the last few months. I get out off bed shortly before 9 a.m. each day, have a cup of coffee, make another and am halfway through it before my eyelids start drooping and I need to take a nap around 10:30 a.m. When I wake up 10-30 minutes later the second half of cup two is cold and usually gets tossed.

I drink Gatorade with lunch, and I think that gives me a tiny boost of energy, more than coffee, anyway.

 

[Hugo]

Since Caffeine stimulates cortisol production I guess that generally people with ME can get a boost when we drink it and probably a negative effect sometimes aswell cause it disturb the balance of cortisol production. I noticed a huge difference now than before ME regarding coffe effect.

But I think we get a smaller effect if we take it every day. I remember that in a bbc program with Dr Mosley he was searching for something that can keep you alert longer time and it should be a better alternative than Caffeine. Since Caffeine has a very small function on ones alertness if we are regular coffedrinkers atleast compare to non coffedrinkers. The participans felt that chewing gum gave them higher alertnes in self assesment but in test the best alertnes product seems to be salvia.
http://www.bbc.com/news/magazine-29817519

 

[Tunguska]

Pure caffeine powder in 50mg doses helps, clean effect, cheap as dirt (same good taste), won't have it any other way.

 

[Hyperflux]

I wrote up a small analysis and my thoughts on caffeine here: https://www.reddit.com/r/Nootropics/comments/4hsxl5/habitual_caffeine_usage_an_analysis/

It's a tough one for sure. There was a study that showed that a single dose of 200mg caffeine taken in the morning still negatively affected sleep 16 hours later. I also notice subjectively diminished sleep quality even if I take 100mg first thing in the morning and no re-doses, and objectively via Sleep as Android (app detects sound and movement during sleep).

One thing I have not taken into account is genetics. Obviously if you're a poor metabolizer of CYP1A2 then caffeine is going to royally mess up your sleep and you'll create a vicious cycle every morning. Also, I'm wondering if COMT + comes into play on how caffeine would disrupt your sleep, since you have more catecholamines flowing as you go to sleep compared to someone who's COMT -/-. Any thoughts on that? @caledonia @Valentijn @alicec

 

[maddietod]

I'm a poster child for that study. Caffeine is fabulous for mental clarity and energy-motivation to do things. Then it ruins my sleep. No matter how early I drink it, and no matter how little I drink (although more is worse).

FWIW I'm +/- on COMT V158M and H62H, and -/- on COMT P199P.

 

[IreneF]

I can go to sleep after a cup of coffee if I'm tired enough. My sleep tends to be less deep in that case. Skipping my evening cup doesn't make sleep any easier.

 

[alicec]

One thing I have not taken into account is genetics. Obviously if you're a poor metabolizer of CYP1A2 then caffeine is going to royally mess up your sleep and you'll create a vicious cycle every morning. Also, I'm wondering if COMT + comes into play on how caffeine would disrupt your sleep, since you have more catecholamines flowing as you go to sleep compared to someone who's COMT -/-. Any thoughts on that?

Here is a review of the genetics of caffeine consumption and response.

Twin studies show that there is a genetic component to caffeine response ranging from 0.3 - 0.6 in different populations.

Several different genes are involved. CYP1A2 influences the rate at which caffeine is metabolised and different SNPs in the gene lead to three classifications - fast, slow and normal metaboliser. Clearance of caffeine can vary up to 40-fold both within and among individuals.

This is not the whole story since fast metabolisers can still be very sensitive to caffeine (I fit into this category).

The physiological effect of caffeine is primarily mediated through its competitive inhibition of adenosine receptors A1 and A2A. Adenosine itself has an inhibitory effect on several neurotransmitters (acetylcholine, glutamate, dopamine) so caffeine, by inhibiting an inhibitor, effectively increases these neurotransmitters.

SNPs in ADORA2A (coding for adenosine receptor A2A) have been associated with caffeine-induced anxiety and sleep changes in caffeine sensitive individuals.

Caffeine has dopaminergic effects though doesn't act directly on dopamine receptors. SNPs in the dopamine receptor DR2 and in COMT, which affects the rate of breakdown of dopamine, also seem to be associated with caffeine response.

Table 2 in the review I linked above lists SNPs linked to acute and chronic response to caffeine.

 

[Hyperflux]

Here is a review of the genetics of caffeine consumption and response.

Twin studies show that there is a genetic component to caffeine response ranging from 0.3 - 0.6 in different populations.

Several different genes are involved. CYP1A2 influences the rate at which caffeine is metabolised and different SNPs in the gene lead to three classifications - fast, slow and normal metaboliser. Clearance of caffeine can vary up to 40-fold both within and among individuals.

This is not the whole story since fast metabolisers can still be very sensitive to caffeine (I fit into this category).

The physiological effect of caffeine is primarily mediated through its competitive inhibition of adenosine receptors A1 and A2A. Adenosine itself has an inhibitory effect on several neurotransmitters (acetylcholine, glutamate, dopamine) so caffeine, by inhibiting an inhibitor, effectively increases these neurotransmitters.

SNPs in ADORA2A (coding for adenosine receptor A2A) have been associated with caffeine-induced anxiety and sleep changes in caffeine sensitive individuals.

Caffeine has dopaminergic effects though doesn't act directly on dopamine receptors. SNPs in the dopamine receptor DR2 and in COMT, which affects the rate of breakdown of dopamine, also seem to be associated with caffeine response.

Table 2 in the review I linked above lists SNPs linked to acute and chronic response to caffeine.

Thanks for writing. Looking back at my genes, my response to caffeine makes a lot of sense. I should only be using it sporadically as to not regularly compromise sleep quality but that's easier said than done once you're physically dependent on it.

 

[Orla]

I never liked coffee and gave up tea (which I was totallly addicted to ) in the first weeks of illness, as I was sleeping badly and wanted to see if it helped to give tea up. It helped a little. I noticed once I was off it that if I did drink even just a cup of normal caffinated tea it would take me hours longer to get to sleep.

Unfortunately I can't even tolerate green tea. I did drink it occassionally, and found it wasn't as bad as black tea for keeping me awake, but it does often cause a problem. Just to give a few examples.

A few days ago I drank a few cups of green tea in the afternoon (finished about 2.30pm) and I was still awake at 7am, with no sign of getting to sleep, so I had to take a sleeping tablet and finally got to sleep after 8am. I normally don't sleep until around 3am or later, but I could feel that night that I just was not getting sleepy at all. This is in spite of taking melatonin and Prothiaden every night for sleep.

Stupidly I did it again yesterday. I didn't get enough sleep and thought green tea might help give me a bit of a morning kick, (which it didn't ). It was a bit earlier in the day, so I thought I would get away with having some caffine at that time. At 6am, when I was still wide awake, I realised my error and took half a sleeping tablet to get off to sleep.

So I am going to give away my remaining green tea as I know it will only tempt me if it is in the house. Funnily enough, I think the ginger or licorice teas have a better effect on my in terms of waking me up a bit, so are a better option for this.

 

[Tunguska]

I'm a poster child for that study. Caffeine is fabulous for mental clarity and energy-motivation to do things. Then it ruins my sleep. No matter how early I drink it, and no matter how little I drink (although more is worse).

FWIW I'm +/- on COMT V158M and H62H, and -/- on COMT P199P.

I don't remember my SNPs but 23andme told me I was sensitive, and I always got the same sleep problems if I overdo (just over 100mg could do it sometimes).

I found increasing inhibitory neurosteroids concomitantly with caffeine allows me to take more caffeine in a day and not ruin my circadian rythm, though I stick to 50mg doses anyway. (The neurosteroids are hilariously underappreciated and (with all due respect) this forum isn't the best place to find out about them.)

 

[Johnskip]

I don't remember my SNPs but 23andme told me I was sensitive, and I always got the same sleep problems if I overdo (just over 100mg could do it sometimes).

I found increasing inhibitory neurosteroids concomitantly with caffeine allows me to take more caffeine in a day and not ruin my circadian rythm, though I stick to 50mg doses anyway. (The neurosteroids are hilariously underappreciated and (with all due respect) this forum isn't the best place to find out about them.)

what are neuro steroids?

 

[Tunguska]

what are neuro steroids?

Exactly.

 

[M Paine]

It's helpful to know how much caffeine there is in a coffee, one shot of espresso is around 200mg. Green tea is around a quarter of that (~50mg), Black tea is around a third (~65mg)

I'm sure most people have heard this advice, but limiting caffeine intake in the afternoon is a good idea for sleep quality reasons. Any of us who have tried a double shot (flat white here in NZ is what I drink) in the afternoon, knows the feeling of trying to sleep afterwards that night.

A green tea after lunchtime however... seems to give me much more energy than a coffee does, and doesn't leave me with the nervous jitters, and most importantly, I can get to sleep

 

[HowToEscape?]

Pure caffeine powder in 50mg doses helps, clean effect, cheap as dirt (same good taste), won't have it any other way.

OK if you are not prone to errors, but pure caffeine is a potent thing to have around. A Lethal dose is easily ingested if one mistakes it for sugar.

 

[Tunguska]

lol! I get the 200mg pure powder capsules and open them. You can get the drug store tablets instead but they're full of extras.

 

[xrayspex]

hey was doing a search on here for COMT158M and this thread popped up-I was reading about it at https://selfhacked.com/2014/12/24/worrier-warrior-explaining-rs4680comt-v158m-gene/

I have always been sensitive to caffeine btw so gave it up, still miss coffee after 25+ years....did black tea but had to give that up few years ago after love hate relationship and as aging more am having to get away from chocolate

but I was curious if any of you can tell me how to search on 23andme to see if I have The COMT V158M Gene (rs4680) it would explain I think the caffeine sensitivity but according to the article at the link above if you have low COMT you shouldnt take quercetin---and I have been taking it for many years because I thought I perceived a slight reduction in sensitivities with it probably because of mast cell help although it can also make me more fatigued. I dont know if I have low or high COMT because I have symptoms of both.

 

[pattismith]

I used to drink coffe in order to be more awake when I was younger, but very quickly it became obvious that I couldn't take more than an expresso.

As my disease got worse, I was tempted to increase my consumption, this is when I realized I was very bad when doing it. Now that my disease does progress for 35 years, I can't drink any more coffee, even very diluted over hours.

It may be because Coffee makes Lactatemia to increase, as hyperlactatemia is one of our problem.

Of course metabolism problems could be involved as well, I have not yet tested my genetic..;

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http://digitalcommons.calpoly.edu/cgi/viewcontent.cgi?article=1068&context=star