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Caffeine Anyone?


juliegee
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Hi All,

I don't consume any caffeine. A few years ago when my autonomic symptoms were horrible, even a sip of a coke or coffee would set off a full-blown tachy episode. I've voluntarily (because I'm a chicken!) given it up. I was wondering if any of you can tolerate it?

Julie

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I was prescribed it. My specialist told me he had done a study on it with people like us and found the majority felt better taking it.

He told me to take 500mg a day in whatever form I could get it, even chocolate :( Never had a Dr prescribe me chocolate before!!

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caffiene is one of the common early treatments for POTS--for some people, it helps to raise the bp enough to be useful w/o raising the heart rate. I'm one of those people and could not function without my cup of coffee in the morning. I just have one, but without it, I would be completely nonfunctional.

Also, I seem to have a paradoxical reaction to stimulants--they don't make me jittery, rather they have a calming effect on my body. I can't sleep if I have caffiene late in the day, but that's mostly b/c it makes my brain awake whilst the rest of me is very sleepy. I also get the backwards reaction to pain killers--while they help with the pain, I become very awake, physically active, and my heart rate climbs a bit. Been a struggle to find something to help me with my bone pain (a common EDS issue) that doesn't keep me up all night. Still haven't found the right one yet.

Nina

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I can tolerate it pretty well. actually i don't think i could function well without it. Caffiene doesn't have that jittery effect on me and it doesn't keep me awake...it has more of a calming effect on me like Nina.

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Caffeine is generally more beneficial to me than not. Like the others, I have to have my morning coffee or I am nonfunctional. I have also recently discovered a small cup of coffee in the late afternoon makes a huge difference in my functioning.

Carmen

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Julie,

Funny the timing of you asking this question. I have not tolerated caffeine well even before getting sick, but now it is even worse.

B/c my body is already in fight or flight all of the time...it just makes me jittery and more tachy, etc.

But, I keep thinking every big once in a while, since it works so well for some folks (Tearose calls it her 'morning nectar), I'll give it a shot.

The other day, I decided to make a cup of tea and quite by accident used a caffeinated tea bag instead of a decaf one. This was a good experiment!!!!! Because I did not know I had used the caffeinated tea bag until later that day after I felt lousy the rest of the afternoon, really tachy, and couldn't nap b/c my heart was going crazy...

Lo and behold, I pulled the teabag wrapper out of the trash later and found I had grabbed the wrong kind and sure enough, I DON'T tolerate caffeine. It was a perfect experiment b/c I never know if I am just 'thinking' I am reacting to the caffeine.

Well, now I know! And that was just a cup of tea!

But, lots of folks do great with it. It seems that for some folks it works great and for some it is just an aggravant...really depends on the individual...but for those whom it works, what a great treatment plan! My ANS doc hasn't wanted me to do the caffeine thing.

Emily

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I can't have caffeine whatsoever...My cardio/EP told me to avoid caffeine since it causes so much tachy with me..I haven't had sodas, etc. in over 3 years...

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Caffeine is like poison to my system. Would love to have a cup of coffee every now and than, but just not worth the tachy, adrenaline rush, weakness symptoms within an hour of having it.

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i was told at first to cut it out of migraines. then after a year i missed it and go to the point that i didn't care if i was sick i wnated to LIVE!!! :( RED BULL! if i am going anywhere i pop a tab of midodrine and knock back a can of the wings! yes ma'am! $2 but well worth it if i can stand longer than a few minutes. now.... i will say though that the next day i am no good to anyone but if it is something i really want to do... it is worth it. LIVE it up (but pack the wheel chair for when i crash)!

dionna :)

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No way, makes my HR go beserk. I can tolerate caffeine in tea, but it is a lot less. I sometimes order a decaf coffee and then tell the waiter to make sure it is decaf as I will pass out if it is not (has happened!). Sounds dramatic, but it is fun to see their face. Worked with a girl who used to deliberately make caffeine coffee for people who asked for decaf. She thought it was hilarious.

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I never thought I could have problems with caffeine. In fact, I love it.

After been admitted into hospital I understood that part of the reason of being so sick was due to the many Cokes I had been drinking. I think I was addicted to it. Not long ago, I could drink around 5 a day...

When I stopped with it, I started feeling better...

I never drank caffeine any more.

I had a similar problem with Nestea (tea) and I had to stop drinking it...

Love,

Tessa

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:) Can't tolerate caffeine or chocolate at all and, boy, do I miss it! Not sure whether it is the POTS or the fact that I have adrenergic excess that is the problem--I suspect the latter. But I haven't drunk coffee or cafeeinated tea for 15 years. I had terrible headaches once I stopped it too--I was a bit of a caffeine junky I suspect. The worst thing was giving up my English cup of tea--my Mum used to send me English teabags in the mail all the way to Ohio when I lived there. It's got less caffeine than coffee, but I still can't tolerate it.

Regarding the girl who gave caffeinated coffee to decaf patrons: I seem to remember a case around about 10-12 years ago where a bloke with a heart arrythmmia sued a coffee shop for serving him caffeinated coffee instead of decaf. It nearly killed him. Doing stuff like that is certainly no laughing matter and it distresses me no end when I see this on t.v. sitcoms. I am sure that I have been served caffeinated coffee instead of decaf in the past. I have just given up ordering decaf altogether when I am out because I don't trust what I am getting.

India

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I have been craving the taste of coffee (even though I never drank much of it anyways before I got sick) but every once in a while it would sure hit the spot...

THE PROBLEM: My mom heard a report on the news that many decaf coffees are not really 'decaf'--and they have quite a range of how much caffeine is in them. I did a search online trying to find out if there is a truly decaf coffee out there.

I found a recent study I think done at U of F? I have it somewhere, but too tired to go get it. Anyways, they went around to various places, ordered decaf coffee and found there was quite a range in terms of how much caffeine was in them.

Only one of the coffees they tested was truly decaf--I think it was Folgers Instant Decaffeinated??? So, my mom bought some for me to try. It says it is 99.7% caffeine free. So, I sure hope that 0.3% is negligable!!!

Anyone else know anything about this????

Also, my caregiver just went to a whole conference on addiction, etc. and one of the things they discussed was caffeine--and how, even if you go to Starbuck's every day and buy the SAME type of coffee every time, the amoutn of caffeine per cup can vary a great deal depending on the BEANS THEMSELVES. I thought this was really interesting. Like did they grow on the sunny side of the mountain or the shady side!

Okay, enough coffee ramblings...

But, if anyone knows of a truly decaf coffee...let me know!!!!!

I want some!

Later alligators!

Emily

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Emily,

Strange that you mention Folgers because I caught the tail end of a piece on CNN today--it was going along the ticker on the bottom of the screen--that said that the Folgers instant crystals was really the only "decaf" coffee that had a very small amount of caffeine in it. Decaf just seems to mean that some of the caffeine has been taken out, I guess, as opposed to "caffeine free" which means no caffeine at all. I presume food labeling standards for caffeine are the same as those for fat and calories. I think I read somewhere that you can list a product as calorie free or having zero calories if it has less than 5 per serving. And similarly you can list it as having no saturated fat if it has below a certain amount per serving--truth in advertising eh? So labeling a coffee decaf could mean different coffees could have a whole range of caffeine amounts in them. Did anyone else see this report?

Is Sanka completely caffeine free? Is it really coffee? I too have absolute cravings for coffee: I often visit a coffee house around campus with students or colleagues and it drives me nuts. But luckily they serve some good caffeine free tea--African Autumn (a rooibos (?) tea) which is quite pleasing.

Ultimately, I have to remind myself that giving up caffeine is just a small thing compared to what other people have to avoid, and I have the widest range of herbal teas outside of Twinings!

India

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I drink two cups of coffee in the morning to boost BP and blood volume (It's half decaf coffee)

I also drink iced tea in the summer when I need to get things done and it helps me IMMENSELY. But I can't have it late in the day or it adds to my PRE exisitng insomnia problem.

Then again, years ago I once drank CAFFEINE coffee at 9pm to stay up late to watch a movie and ha, fell asleep around midnight...wonder if I should try that experiment again to see if my body does the opposite! :)

My tachycardia can handle a little coffee. Some with POTS in the passed told me they drank real coffee ALL DAY to keep up with kids and the house. Caffeine is often suggested in moderated doses but NOT if it adds to the problem. Duh, common sense comes into play, folks.

But you will NOT TAKE MY AM coffee away from me. Helps me a lot though I still feel exhausted after I drink it...it does help as a vasoconstrictor and many of us need that.

But I wouldn't do expresso or the super strong coffees...I need to control the dose and how it enters my body. I also use Cremora to slow the jump into the blood stream.

Also, there is theobromine and another xanthine deal in coffee. In some folks THAT can be a bladder irritant or make you nuts like caffeine. So decaf coffee still has other things in it. On rare days when my BP is very low, I will have an extra cup or two of coffee. Helps...I may get the jitters then but take meds to counteract it.

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India...so interesting you saw that on the news ticker!!! I may give it a go. I don't know about Sanka, but they do have the same 'claim' of being 99.7% caffeine free on their little bottles of instant coffee. I LOVE tea also...I was in heaven when I lived in England for a bit.

Sophia--could you enlighten me on theobromine and xanthine???? I know nothing of these. are you saying they could produce the same effects as caffeine??? i will have to watch for bladder irritation, but one cup here or there should not be a problem, hopefully...

Emily

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