Coffee

[mully2014]

I'm wondering if people have tried drinking coffee everydy and notice a difference in their POTS symptoms. My doctor had recommended it before and I had tried it and didn't notice a difference now considering trying it again. Anyone acually notice a difference with having caffine.

[icesktr189]

I used to tolerate it and now I get really bad headaches. I can tolerate it when my POTS is more under control and it seemed to give me more energy and "up" time, but now my bp is all over the place.

[POTSMama]

Before I developed the MCAD symptoms a few months ago, I admit to having been a bit of a coffee-aholic. I loved, loved my morning cup and because there was good coffee at the office, I'd drink several more some days to keep me perky! I had to drop the coffee cold turkey to prep for my 5-HIAA test to rule out carcinoid syndrome when I started this flushing, and had the worst coffee withdrawal you can imagine (migraine headaches, shaking, etc), and realized that maybe I had been doing too much of it!

Then with my current inability to eat very many foods without reacting, and my BP also whacko, I haven't tried it again. But I'd dearly love to have a small cup in the morning, and maybe I should try since my BP/HR are always a bit too low when I first get up before they start soaring later. FWIW, though, my PCP who seems to know a fair lot about POTS thought that coffee was generally a bad idea since it was a nervous system stimulant.

Carol

[Angelika_23]

Caffeine makes my HR increase.

[juliegee]

I have a love/hate affair with the wicked brew The long and short of it, I LOVE it when I can tolerate it. When my MCAD was out of control, even a sip of anything caffeinated, would send my heart into an SVT. I had about a year or so where I was forced to totally stop all caffeine. I have gingerly re-tried it and LOVE it. I can't start my morning without a nice cup. The additional vasoconstriction is both good and bad for me- helps with pooling and my low BP, but it can hurt my reynauds. Moderation & a medium strength, as opposed to the extra bold favored by my hubby, are key.

[Katybug]

I do get some good effects from it but I have to be careful. If I feel like I'm having blood pooling but not a lot of adrenaline surges in the morning, then I can have a cup (only one cup) and it makes me feel better and allows me to leave the house for a couple of hours. If I'm not sure sometimes I do 1/2 caff and that helps too. If I am having adrenaline surges then it makes me too shaky. It also has the effect of helping me sleep sometimes when I can't get my body calmed down...weird, right? If its after midmight and I'm still not asleep and having surges, I will dink a cup of coffe and it usually has me asleep in 1/2 hour. Can't explain it but I know someone else on the forum said it does that for them too. Like many of the other respondents I had to use trial and error to see under which circumstances it helped and which it made worse.

[Sif]

I was a heavy coffee drinker (5-6 a day sometimes.. eck) before I got sick so I wasn't too happy about suddenly not being able to tolerate it anymore. Anything caffeinated makes me all jittery and tachy now so I have to avoid it!

[HopeSprings]

I do 1/2 caf, 1/2 decaf too. Coffee seems to help a lot to snap out of the horrible, groggy, foggy headed feeling in the AM. However, my husband made the coffee a few weeks ago with mostly caffeinated (i didn't know)... I felt nervous and like my heart was going a million miles an hour. Sif - Maybe try doing 1/2 decaf.?

[potsgirl]

I have one cup of coffee in the morning, and then I switch to green tea, which is decaf. I really enjoy some of the flavors of coffee from Trader Joe's, and right now they have a holiday green tea out that I find yummy! The coffee does help me function first thing in the morning.

Jana

[Dizzysillyak]

We have athread here on caffeine if you're interesred. And regardless of what's being promoted about the bemefits by

The coffee companies, Some people will not be ok with a small amount. It takes me 48 hiurs to recover from the adrenal rush I get from a tiny amount of caffeine. I love coffee and chicolate but it's not worth feeling like my heart and adrenals are racing. Tc .. D

[GingerA]

I have 2 cups per morning. A doc told me that it would slow digestion some. I am afraid to stop because of withdraw so I'm not sure if it works or not.

[mully2014]

I've noticed that occasionally when I have coffee it will make my tachycaridia act up even more than normal but other times it deosn't seem to do anything. Any advice on how to know when to drink the coffee and when to not? I love the taste of it so I just need to figure out when it is a good idea!

Thanks for posting!!!

[POTSMama]

Just a couple notes:

Green tea does have caffeine, unless it's specifically marked as decaffeinated green tea. I didn't know this and had tried to reduce my caffeine consumption last year by switching to green tea, but then found that out. I assume it's less caffeine than coffee though.

I think there might be some research out there saying that caffeine has the opposite of a stimulant effect in persons with ADHD. I know someone whose son is severe ADHD and she didn't want to put him on ritalin. She instead put him on a cup of full caffeine coffee in the morning and he calms down as well as ritalin - - go figure! I don't know if this has anything to do with POTS (as our nervous systems are presumably "rev'ed" too?) but thought i'd mention it.

I used to feel better when I drank coffee. Since the MCAD (tentative diagnosis - - still being evaluated but pretty likely) I've been afraid to try it again (I was forced to drop it for the 5-HIAA test and didn't pick it back up again). I feel sluggish and not sure if it is the lack of a morning coffee or the MCAD.

[mully2014]

Wow, that's really interesting about the ADHD... I take Ritalin for POTS and the NCS. I'm not exactly what the Ritalin does for the POTS; I guess it raises the blood pressure slightly. Do you think it would be too much on the body to drink the coffee and be taking Ritalin.