Is decaf coffee a trigger for episodic ataxia attacks?

[Rhyothemis]

I have seen coffee listed as a trigger, but I have also seen caffeine. Is it the caffeine that is the problem in coffee or is there another component?

[Crochetkatt]

That's what my neurologist said, and chocolate. I can't say about the caffeine as I don't drink tea or coffee, but chocolate is definitely a trigger when I'm going through one of my ataxia phases. Even the smallest amount such as the chocolate in the bottom of a cornetto can set it off. Thankfully, I'm ok at the moment, so I can eat it. As the name suggests it is episodic, I've had it for 43 years, misdiagnosed for over 20. But I can go years without any attacks, then suddenly BAM! it's back. Acetazolamide controls it for me. Without it the vertigo attacks can last over 30 hours. Not very pleasant. I'm just getting back to normal after having attacks for over a year. Balance is improving, but still wobbly. I try to walk unaided every day. I find this helps me in the long run. Hope you're looking after yourself and keeping safe.

[Rhyothemis in reply to Crochetkatt]

Thanks for responding. It's more of a research question - I have not been diagnosed with anything. I have lower urinary tract symptoms and some other autonomic problems - much of the same early symptoms as my father who was diagnosed with multiple system atrophy. I don't know if I am in the prodrome of MSA - which is supposed to be pretty much always sporadic (though there have recently been reported a few familial cases) or perhaps an undefined ataxia (I'm assuming the doctors did an ataxia panel for my father so it would not be any of the genetically identified ones). Sometimes coffee seems to trigger my LUTS - regular or decaf; which is unfortunate since it also seems to give me a really good cognitive boost. Other sources of caffeine are not a problem. My father had tobacco sensitivity with his MSA; second hand smoke is also a trigger for me.

[wobblybee]

Although it is often assumed that decaf coffee is 100% caffeine free, USDA regulations report that decaffeinated coffee only needs to be 97% caffeine free. Although 3% is a relatively small amount of caffeine, it's still enough to affect people who are sensitive to caffeine.9 Nov 2017

businessinsider.com › is-there-...

It’s widely accepted that coffee can be one of the triggers for an episode, particularly for people diagnosed with EA.

[Rhyothemis in reply to wobblybee]

Thanks for responding. Do you know if there are people who are triggered by coffee but not other sources of caffeine (tea, soda)?

[wobblybee in reply to Rhyothemis]

🤔 I recall people on other support groups mentioning things other than caffeine being a trigger for them. It can be different for everybody... I used to have regular episodes of Deja Vu, for me these were triggered by running water, mostly early in the morning.

[suzie44na]

Hi, I heard that high Methylglyoxal can cause tremors and make them worse. This is found in chocolate, coffee and manuka honey. In PNKD you have a higher Methylglyoxal level, so maybe in ataxia it could be high too, not sure but just a thought. Best to avoid trigger foods. All the best.

Suzie

[Rhyothemis in reply to suzie44na]

I don't think it is the methylglyoxal since I took a high MGO manuka honey for a stomach issue and it did not cause an increase in LUTS, but thanks for pointing that out. I didn't know that coffee and chocolate contain methylglyoxal.

[suzie44na in reply to Rhyothemis]

Maybe it is just in PNKD then, I now have decaf tea and coffee which has helped my twitching muscles.