Coffee

[Guest tearose]

Any ideas?

I'm trying to help myself to more scientific understanding about why I am not getting better. You know that I have my morning coffee and we are told in moderation it is okay. What if we just become desensitized to the bad effects and are actually contributing to our ANS being out of sync?

I am going to try to read more but here is a link to an article..

http://mentalhealth.about.com/library/yourturn/uc091602.htm

I started to think about my management skills and wonder if the coffee "nectar" I use in the morning could be making me sick.

If I am so oversensitive to things like medicines and temperature maybe the coffee is not helping.

Anyone notice a difference stopping coffee? If you were using it to help you get your blood pressure up and going in the morning what do you do instead?

best regards,

tearose

[yogini]

Hi Tea,

I had written you a longer response, but lost it! I think there are varying opinions on caffeine. I experimented with cutting it out completely (as recommended by my PCP to improve sleep). I then felt better sleepwise and POTS-wise. I still have it sometimes if it happens to be around and find that my worst days are often those on which I have caffeine - sometimes, but not always. So I only have it once in a blue moon these days. You may want to try going caffeine free for a week or two to see what happens...it does help some people, so you can see whether cutting it out helps or makes you worse...

[bellaluna]

I agree that you should try to cut the caffiene and see how YOU feel. From what I've heard everyone is different in this area. Personally, I've found that caffiene makes me feel worse, so I try to limit it as much as possible. Hope this helps.

Mary

[jjpots]

I've also experimented with the coffee thing and it doesn't seem to correspond usually for me. Some of my worst days are when I've had no caffine and vice versa. Who knows.

JJH

[morgan617]

I don't tolerate caffeine at all, in any form. And I haven't for a long time. I initially went off it because of my meneires (inner ear disorder) but it really makes me surge and my heart pound too. A big nono for me. But I sure do miss it! morgan

[Rachel]

I have gone without coffee for days, weeks, and even months at a time, but going without didn't help my health. A cup of coffee gives me a little boost in the morning. It also helps with motility issues a tiny bit.

It could be worth going without coffee for a while to see if you notice any improvements in your health. Perhaps an extra dose of fluids and electrolytes in the morning would help to raise your blood pressure.

I hope you can find some answers.

Rachel

[iheartcats]

I went without any caffeine for a month - while I did sleep a bit better, it didn't change my POTS symptoms at all. Now I have it in moderation, a latte once in a while in the morning, Coke Zero once in a while, but try to have it before noon.

[flop]

I cut out as much caffeine as I could when I was first diagnosed - my cardiologist advised me to cut out tea, coffee, cola, chocolate. I dutifully did this for 6 months but it didn't really seem to make any difference to my symptoms. After a while I began to have the odd cup of instant coffee then became more adventurous and had "proper coffee". On one or two naughty occasions I have even taken Pro-Plus tablets (caffeine tablets) to keep me awake. The caffeine doesn't seem to have any effect on my POTS or heart rate. I'm sure that too much caffeine isn't good for anyone (POTS or not) so I don't drink much coffee but if I feel like a cup I don't stop myself.

Flop

[juliegee]

I went without coffee for years. Even a sip sent my heart into major overdrive (200bpm) and I would almost lose consciousness. Believe me, if you really can't tolerate it- your body will let your know. Even a tiny sip of diet Coke would do the same thing. It was difficult going off caffeine (and I only drank a cup a day.) I had body aches, headache, etc. Just this year, I began to experiment with a sip here and there. Lo and behold, I'm tolerating it. I LOVE the extra boost of energy it gives me. I can safely drink a cup in the AM. I haven't scientifically checked my pulse, but I'm definately not having the severe tachycardia any more.

Julie

[Guest tearose]

Caffeine was toxic and coming off it has shown me how sick it was to me!!!!

I am more clear headed, I am sleeping better, I am voiding better, I have less arrhythmia, and this is only day 17!!!

I hate mocha, coffee ice cream and just don't like the coffee taste. I was drinking it because the doctor said it would help raise my blood pressure.

It makes me wonder now how many years I have lost due to a caffeine toxicity/ allergy and all the while I thought it was my POTS. Once you become desensitized to the initial symptoms of caffeine, it can be a dangerous drink. Just think, you are ingesting the allergen and the epinephrine at the same time. You wouldn't know you were getting ill, in us, it would mimic our POTS and ANS dysfunction symptoms.

Now I am rebuilding my body and my life.

[corina]

congratulations to you tearose!!! (now your forum name is clear to me: it's TEArose ).

i am glad that cutting out caffeine is working for you.

for me it is quite different. it seems that i really NEED caffeine. i've been drinking coffee since i was about 8 (no, my mom didn't want me to, but she couldn't hold me back) and i really love it. when i am sick (nausea) i drink coffee and have a little bite and start feeling better immediately (i don't do this during the night of course i eat carrots then!!!). in the morning i start off with tea at breakfast but after that it is coffee for me.

good luck on your healing journey!!!

corina

[yogini]

Tearose, I'm SO glad it's helping. I actually did a project on caffeine in the 5th grade. I cut it out b/c I remembered all of the side effects - insomnia, tachycardia, arrythmia - it seemed like it might not work well with someone who has POTS. Not to say that it is true for all, but still worth experimenting with for many of us. I wish our docs would sit down with us and look at things we do, eat, etc. in our lives that might unintentionally be affecting how we feel, but we are sort of left on our own to do this. It's great to have a forum where can get different ideas on what help others.

[ellen]

Tearose- good for you! That is so great to have that kind of improvement with such a small change.

I have gone caffeine free for several months without much change. Now I'm back to decaf tea every morning (4mg caffeine) and all is the same.

[ajw4790]

It normally if anything has a good effect on me, then now recently I am bummed because it seems to be making me feel worse at times! Bummer! We will see! It may also be the sugar or something...

[Kitsakatsa]

Wow! This is sooo individual. I never would have thought. I credit coffee for saving my job. I need it after lunch for the BP drop and the cog clouding. It turns my day around and without it, I would have to go home.

It does increase the nausea, but I have to pick and choose which I need to tolerate and just get through. Coffee helps me keep my daily POTS drama a secret from my co-workers and corporate counterparts!

[Sophia3]

WOw. We all are different.

Once years ago I tried some healthy way of eating and felt HORRID..no caffeine and no chocolate or junk food. PLUS I lost too much weight.

And without AM coffee, i can NOT get my mojo working. Even with COFFEE it's stuff but at least I can get upright in between the reclining or lying flat all day.

Also can help before I go out of the house for a venture like quick dinner or recently, to hear an old fave band play close to home. THANK GOD THEY BANNED SMOKING in all restaurants and clubs in ohio, LOL.

I would take midodrine more often if I could afford it (like coffee only I don't get the jitters or stomach upset)

Glad YOU are seeing improvement, tearose.