Caffeine and ms

[metalbender]

I have been reading that caffeine helps prevent ms...(some study in 2008)....But then I read it makes the symptoms worse...Since I drink LARGE quanities of coffee because I can use all the energy possible, I am curious of what others here think?...

Michael

[Ben739527]

According to this https://www.summitpartners.com/companies/sector/growth-products-services, summit partners is invested in Philz Coffee. They gave the largest amount of funding, $95M, to healthline media in 2016 (https://www.mmm-online.com/home/channel/media-news/healthline-media-receives-95-million-in-equity-funding/). Healthline media owns healthline, medicalnewstoday and some lesser known sites. That $95M is the only reason you've heard of healthline and medicalnews today. Definitely don't trust https://www.medicalnewstoday.com/articles/307370. I only trust results of publicly available, well designed, double blind clinical trials with a decent population size. So far, I've found none in regards to MS and caffeine :/

[sllowe]

Hi there,

I love my coffee - though while I was in my bad flare I couldn't have it - it ramped up everything I had going on. I would take sips only (just to ward off the headache).

I think in terms of what it can prevent it's like butter - good one day, bad the next, you know, the everychanging research.

Last I heard it was good for your heart. Though I'm sure for those who it gives palpatations would beg to differ!

-Shell

[metalbender]

Thanks everyone for your input...When the doc put me on amantadine and was instructing me when to take it, I asked if I could take it with my coffee in the morning...He chuckled and said "Of course".   So, I kind of took it as coffee was not a problem with ms...But I still wanted your inputs...

After I get up in the morning, I get my morning sickness....When I'm in the bathroom vomitting (usually dry heaves), the coffee is brewing....After about an hour after waking and have my first or second cup, I start to feel better...This is the best I will feel all day!!....I do not get tremors until later on when I'm at work....I get them so bad that people tell me to sit down because I'm at the point of falling over....And it is simple....It's because I get excited about something and I push myself...I will drink an entire pot of coffee in the morning but I have no caffeine while I'm at work...Not even a soda pop...Well, that' not true, maybe one or two throughout the week...But generally I don't drink caffeine at work....Weird, but true...Speaking of coffee, mine is ready and I will pour a cup..Just getting ready to go fishing...YEAH!

Thanks again everyone,
Michael

[supermum_ms]

About the coffee, we've talked about this a few times before, what i've worked out is that when you in the states say coffee its not the same as when i say coffee. I think instant and not the beans brewed perculator expresso coffee shop type coffee, lol and i've got a blastedly expensive italian coffee machine sitting on my kitchen bench that would be more usefull as a door stop lol.

I actually always find these conflicting research projects ammusing because I think there probably wouldn't be a doctor in the world that hasn't had more caffeine running through their veins than blood during their internship, so where are their diseases? Surely with dr's breading like rabbits every year, their numbers and consumption levels could easily prove these theories true or false lol

Its all common sense if you think about it, caffeine is a stimulant, it affects your adrenaline (sp) levels and is said to affect your CNS which for MS is a bit of a problem. Caffeine withdrawls and or over stimulation frrom caffeine is equally problematic if you already have medical issues eg tackicardia you dont want to consume anything that could (artificially stimulate) inadvertently set off your heart.

Tremors can be equally a sign of withdrawl or over stimulation it just depends on the before or after factor to when the tremor happens and thats for anybody MSers or not. If you have CNS issues anything that stimulatates can conceivably have either a positive or negative affect. The amount you consume is going to be individual, for someone easily affected it wont take much before its a problem but for others it could take a truck load and still they dont feel it.

I need the stimulant and my tremors and low energy levels are there before, during and after a cup of 'real' coffee, i dont drink enough to have withdrawls, though my brain is still fast asleep until i've had that first cup so maybe i'm just a coffee addict and dont know it lol

Cheers......JJ

[doublevision1]

Weird, they're gone now. I'm on my lap top now; saw them earlier on my desktop.  

The words "patients" in my post was highlighted in blue and double underlined.  Also "constipation" and I think "caffeine" in Jen's.  

When I clicked on each word a small window opened with an ad, but of course I can't remember now what the ads were for.  Bizarre.  

[RazCarver]

The blue words are. Links to ads and they have been there. Not a virus but a real pain.

[supermum_ms]

LOL i had that a couple of weeks ago, my hyperlinks went to kinky stuff or erectile dysfunction adds it drove me nuts accidently getting these ads on my full screen, ds thought it hilarious lol.

I dont know if this worked to fix it or if it was just a coincidence, but i blocked pop ups, fully logged off and logged back in and it was gone and i haven't had it since.

[Lulu54]

DV - what highlighted words?  I don't have those on my screen.  Have you acquired a special virus on your machine?

[doublevision1]

what's with the automated highlighted words?  they hyperlink to ads.  Is this new or am I clueless that I didn't really notice them till now?

[jensequitur]

Speaking personally, I haven't noticed any particular problems from the gallons of coffee I drink every day.  Actually, I only have 3-4 cups of coffee per day, at most.  I drink a couple in the morning, then one or two during the day.  The biggest problem with coffee is that it exacerbates constipation, but honestly I haven't noticed a difference.  And I can put psyllium fiber in my coffee, so I usually put a big ol' spoon of that in the coffee during the day.

But I don't have a racing heart from too much caffeine.  I can drink a cup of coffee before I go to bed, and not have a problem.  I can also take Benadryl without having the sleepy attack that most people do.  

doublevision1 has it right on the whole smoking thing.  Smoking will escalate your disease course.

[Lulu54]

Michael,
Have you read enough from us now to consider weaning the coffee a bit?  Like I said, don't do this cold turkey.  I quit the coffee and the smoking this way, but under medical distress and being captive inthe heart hospital.  I wouldn't recommend that method to anyone.  

[doublevision1]

I've read contradictory info about caffeine and MS; some sources say it;s discouraged because it intereferes with sleep which is so important; others say in moderation can be helpful to ease fatigue.  I drink 1-2 cups a day and it doesa help my fatigue.  I am wiped out on days when for some reason I skip it.


SMOKING on the other hand has been shown not only to increase MS risk in those who have other MS risk factors, but also accelerates the rate of progression, ie: RRMS patients who smoked progressed to SPMS much faster than non-smokers.  The good news is that quitting may partially reverse the negative effects on disease course.  Now there's some motivation to quit!    :)


Here's more detailed info, it's definitely worth a read:

http://www.medscape.com/viewarticle/706194

[HVAC]

With any changes I have made since being diagnosed I find I have to do them very slowly, replace them with a habit I like and be really willing to make the change. I did not make a lot of changes at once. Caffine really is not an issue for me.

Alex

[RazCarver]

a 6 years ago I went completely caffine free. I still had tremors, trouble sleeping, bladder issues. mostly I cut the caffine because it messed with my heat rhythm. I have gotten back to drinking a few cups of real coffee a day. I can tell the difference and I really need to cut it all back out because I get my heart rate going to fast and wacky.

I thought it would help with being tired but for me it only truely makes it worse. walking more seems to help the tired more. not much but i keep trying. walking is right exhausting. i don't walk well and I fight my body doing it. guess I'm pretending I'm in control. to much caffine can make my tremors worse.

[metalbender]

I can't quit cold turkey because of withdrawls...I am currently taking amantadine twice daily and it helps a bit but the coffee is the most satisfying...I do have tremors, but they happen mostly at the end of the day when I push myself to hard....I do see the neuro on Monday...My symptoms have not improved since the onset of all of this...Actuallly I feel perhaps a bit worse physically, mentally and emotionally...I will tell the neuro this....My vision is what really upsets me...And the lightning I see when I turn to fast is aggravating...I was just wondering how many people have heard anything on caffeine...Smoking is another story and I know I need to quit....

Michael

[HVAC]

Hey good question. I have not heard that. The truth is once you start showing symptoms if it is MS you do not have to worry about prevention. No one knows what triggers MS. It probably a combination of genetic and environmental.  Researchers do not even truly know what MS is.The real question is is it bothering you now. There are medications that can help with fatigue.

My only dietary sin these days is my coffee and I am not giving it up.

Alex

[Lulu54]

M - I think all of this is simply trial and error in finding what feels good for us as individuals.  You might want to throttle back on the coffee, though.  Whatever you do, take it slow because cold-turkey without the caffeine can give you killer headaches.

We know coffee is an irritant to our bladders - do you find you have sudden urges?  Could be related.

I was a huge coffee drinker before my heart attack.  While in the hospital they gave me this brown cr ap that was supposedly decaf and advised that I cut down or even out the coffee.  I just gave it up and I've had maybe 10 cups of coffee in three years.  Surprisingly I found I don't particularly miss it.  

Believe it or not, exercise will give you a boost of energy - you might want to try adding some of that to help.

As for preventing MS, it obviously didn't work for me and a large number of MSers who I know who still drink coffee.

Lulu