Caffeine And Hyperadrenergic Pots Patients

[kitt]

Found this about caffeine on the Dinet 'What To Avoid' page...

Just read this and thought other hyper pots patients might find it interesting.

Pasting:

"However, caffeine also increases the length of time that catecholamines remain active and this can be detrimental to those with a hyperadrenergic state. POTS patients should check with their doctor before taking over-the-counter products.

An 'ah-hah' moment for me.

Used to drink coffee daily, but in the last year stopped drinking it almost exclusively. Just stopped for no reason other than it didn't 'feel' good anymore, but never made the connection.

Had a cup of coffee this morning, and I felt far worse than normal all day. It's an interesting point. I know caffeine helps some pots patients with vasoconstriction.

[Joann]

I used to love coffee, but about 10 years I started to have reactions to it. Heart pounding, red face, anxiety, all that lovely stuff. May be related to pots, or just be a sensitivity to it. My brother and dad have problems with it also. Not my mom though, she drinks pots of it everyday.

I used to drink decaf, but too many of them have caffeine in them too. I think Folgers is the best 98-99% caffeine free.

[bustersacc11]

Coffee makes me feel lousy. Feel like I am having a heart attack. I truly believe if I was given a Red Bull or shot of expresso it would kill me. Anything that mimics adrenaline opens up the adrenaline flood gates on me and I go into a full blown storm. It is awful. I used to drink 4-6 cups of coffee a day. I loved it. The past 5 1/2 years I can't even tolerate decaf coffee. Simple things we enjoyed.

[blueskies]

I didn't drink coffee for 20 years because I was told it would be making my anxiety attacks worse and it would be wise to stop. A few years ago a gp suggested I drink 2-3 cups of good quality ground organic coffee a day. I do. And that has no effect on my tachy. I guess for me that's an acceptable range. It does help a bit with migraine sometimes -- the vasoconstrictive effect I guess.

blue

[margiebee]

I don't know what kind of POTS I have (I have some characteristics of hyper POTS), but I cannot tolerate caffeine at all. I think perhaps I am just extra sensitive to it, because even the amount in chocolate or decaf gives me a "buzz" similar to what a normal person would experience with a cup of coffee. Caffeine does increase my BP which is generally good as my BP is normally in the 85/50 range, but it makes my tachy go absolutely insane.

[Psalm 23]

I must be one of the odd hyper pots patients as I seem to benefit from a cup of organic coffee ( with a good splash of almond milk in it ) in the morning. But only after I have eaten a small meal, salt/fluid loaded and taken my medications first. I suppose It helps push me into the next part of my morning routine which would be a walk. If I go past drinking a cup or try to have more in the afternoon I would be over run with the jitters and have increased difficulty sleeping. I guess we all find different things or routines that benefit us. Mornings are the absolute worst for me in terms of overcoming those flu- like symptoms that try to keep one from getting out of bed.

I had actually read the Dinet page of things to avoid a while back and eliminated coffee for a short time in an attempt to try anything suggested that might help my condition but in my case I just felt the worst for it.

Janet

[ramakentesh]

Caffeine gives me a half hour boost and then a massive crash. It decrease adenosine modulation of sympathetic synaptic NE potentiation. It may also result in increased alpha 2 presumaptic receptor blunting on me release or cause the body to shoot off too much NE if synthesis is compromised.

caffeine also reduces cerebral blood flow in normal people due to increased cerebralvascular resistance.

for me it makes you think of net deficiency - boosted activity and release but then it all might leak into serum and bleed vesicles dry earlier.

[ramakentesh]

Sorry I meant if it makes the body shoot off too much NE where ne synthesis is compromised it may just make a person crash earlier.

[ramakentesh]

In hyper it would just add fuel to fire.

[anna]

Now this is starting to make sense, my mother, myself and my children find coffee makes us fall to sleep!

[Birdlady]

10 years ago before I knew what was wrong with me, I was well known for my caffeine addictions. Coffee, tea, lattes and soda were the only way I could do anything at all. At that point I was working 40 hours a week and going to school full time. I don't know how in the world I did it.

I still do fine with coffee, but there are just some days where it's really bad. For me my heart isn't the problem. Usually I will get the crash that Rama mentioned and then I'll have to drink more caffeine to pull myself out of it. My morning coffee is something I look forward to and I rarely have issues with a single cup. When I have more than 2 is when I begin to have trouble, so I try not to do that very often! Someone mentioned chocolate....For some reason the ultra dark organic chocolate bars are terrible for me. I feel nauseous and get a headache. Regular hershey's or Nestle's chocolate has no effect on me.

Go figure though, I can take pseudoephedrine and feel better, so this all makes so little sense to me. haha!

[Psalm 23]

Maybe I better rethink the morning coffee habit after hearing the convincing arguments against. In theory it is probably one of the worst things one can consume with hyper pots but I suppose I have convinced myself otherwise in favor of what I suppose are short term benefits. I do crash after even a short easy walk. Maybe the crash is more post coffee related than walk related. I crash on and off all day so it's hard to tell. In light of all the convincing arguments against coffee consumption though I will try eliminating coffee again and see what results it brings.

Janet

[MomtoGiuliana]

I don't know how my POTS is classified, I never got any diagnosis beyond POTS. However, coffee makes me extremely jittery and my heart race/palpitations. I can't tolerate even a sip or two.

[dpeeps]

The best I feel is when I have only one cup of coffee per day. If I drink more, I feel bad - and if I drink less I feel bad. I know this sounds odd. I find that the one cup perks my spririts and gives me a little energy to face the work day. If I drink more than one cup though, I crash. I seem to have a personal "threshhold" for caffeine.

[dahlfacepoet]

Caffeine is the only thing that helps my migraines, although it's a double edged sword. After having two tachy episodes in a month I cut out my Starubucks coffee energy drinks (gentle on my belly), and stick only to coffee to help take the pounding of my migraines away. I'd like not to be depending on the caffeine and have the daily migraines under control, but it works for now.

[ramakentesh]

10 years ago before I knew what was wrong with me, I was well known for my caffeine addictions. Coffee, tea, lattes and soda were the only way I could do anything at all. At that point I was working 40 hours a week and going to school full time. I don't know how in the world I did it.

I still do fine with coffee, but there are just some days where it's really bad. For me my heart isn't the problem. Usually I will get the crash that Rama mentioned and then I'll have to drink more caffeine to pull myself out of it. My morning coffee is something I look forward to and I rarely have issues with a single cup. When I have more than 2 is when I begin to have trouble, so I try not to do that very often! Someone mentioned chocolate....For some reason the ultra dark organic chocolate bars are terrible for me. I feel nauseous and get a headache. Regular hershey's or Nestle's chocolate has no effect on me.

Go figure though, I can take pseudoephedrine and feel better, so this all makes so little sense to me. haha!

Dana - you and I have pretty darn similar POTS! Apparently some constituents in strong dark chocolate are hypotensive.

[ramakentesh]

Ive spent the last two months trying to work out how pseudoephedrine works so well for my POTS with limited success. A medication that tricks the body into releasing more norepinephrine would probably only work if something was stopping that NE from being released in the first place...

[Relax86]

1 morning cup is good for me. I used to have 2 but the second one hurts my belly. I typically like the second around 1 or 2 pm but I usually just drink half the cup. I think it's a mental thing.

I also feel crappy with dark organic chocolate. Recently bought a bar w/salt and can't seem to tolerate a square. I do love my Hersheys kisses though!!

I watched the thread where this group was chatting about pseudoephedrine. I still don't really know what type of POTs I have so I'm cautious about jumping on the bandwagon of other peoples treatment. I did start to use some Loratadine which is Allegra....not the D....because I seemed to be having more reactions to food, more often. But please don't take away my coffee!!!!!