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Confused about caffeine

I keep seeing on here that caffeine is bad. When I get a regular headache and sometimes take the Excedrin, that helps. I asked me new neurologist as well and she was confused why I thought caffeine is bad and specifically said it helps. Is it just a trigger for the vestibular symptoms? Someone enlighten me please and thank you.

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I had this conversation with a standard migraine patient yesterday. Caffeine helps his headaches, probably because it’s a vasoconstrictor. Maybe it would help mine, too, after all my rescue med of choice is a barbiturates/caffeine/acetaminophen combo (Fioricet). BUT caffeine is a straight disaster for my vestibular symptoms. Things have to be way off the rails for me to take a rescue med that helps with one thing and hurts another.

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I called my Drs nurse just yesterday with the question! I have gone caffeine free for the past few months and have a headache that will not break. I asked her what I should do… she mentioned excedrin migraine. I told her I was confused by that since it has caffeine, she stated that while they do not want me drinking large amounts of caffeine, that as a “rescue” for the migraines or headaches, the caffeine in the small dose of a combined drug does help many people. I was very confused too!

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it is weird to be honest, i think large amounts of coffee are bad, but one cup or hald decaf / half caffeine (which is what I do) is ok. As for rescue med, they are good as once in a while, as other painkillers, but not too often. I had a horrible headache today, i hadnt had one like this in a while. I went for cbd, it helped but it also made me super sleepy! After sleeping for 2 hours I thought maybe another med would have been better. Who knows!

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oh one more thing, my neuro told me to stop all caffeine completely… :woman_shrugging:t4:

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It’s a trigger for some, not for others. I think the worst thing you can do is vary the amount and time you consume the caffeine. Only way to know is to eliminate it for a while (maybe even several months) and reintroduce it to see how you feel. I haven’t touched caffeine in like 6 months, I don’t really feel I crave it or feel I need it anymore to stay awake. It was a major trigger for me.

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Certainly the more common advice given.

The migraine specialist neuro I saw told me not to bother with any diet or caffeine restriction at all! Helen

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I’ve gone decaf completely and I don’t find it a problem to keep to that at all now.

I think the condition goes through many phases and in some phases it’s easier to identify triggers than at other times.

It wasn’t until I started get really much better that I noticed that caffeine was a big trigger for me because I was going into relapses after consuming it.

Since giving up caffeine I’ve not had a significant relapse. (but of course you never know I might just have been getting better anyway!! :D)

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I think your spot on James. For 4 years i was so ill i could never distinguish what was a trigger or not but then as time ticks on and your feeling more in control you can identiify them better. I cant even change tea bags without my sinus and ears playing up. Before i was too poorly to even notice…or care!!!

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Caffeine is, like exercise, both a trigger and a treatment. As are NSAIDs and other migraine abortive etc

Exercise a little, but not too much, as you can tolerate.

Take NSAIDs/migraine abortive occasionally and they help. Take them all the time and they make it worse.

Caffeine can help reduce symptoms. But too much caffeine can trigger attacks.

That’s just the way it is, I’m afraid!

:flushed:

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As can too little as it appears. As @ander454 said, and I read somewhere treat caffeine like a medicine. Take it regularly and consistently. Helen

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Apparently it causes long-term changes in the brain, so makes sense that any withdrawal should be steady and slow, just like any psychoactive medication. However I’m still a great believer in going to near zero and staying that way. It took me a long time to come around to that thinking because if I’m honest I was an addict and my brain was telling me to resist withdrawal. YMMV.

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I absolutely love caffeine, but for me it’s a huge trigger.

I don’t usually get the vertigo as I’m drinking the coffee either, it’s just that consuming caffeine regularly increases the amount and severity of the vertigo I experience significantly.

It’s worse the more caffeine I have. 1 cup a day causes about a 3-5x increase in vertigo symptoms overall. 2 cups a day maybe 6-7x.

Even after several months my body doesn’t seem to become accustomed to the caffeine.

Every single time I quite caffeine within a week the vertigo symptoms decrease. They don’t go away of course, it’s just the baseline without caffeine in my life is much more pleasant.

Unfortunately I’m absolutely addicted to coffee. Even after quitting it for weeks I still thirst for a cup if I have a morning where I wake up feeling tired still.

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I have that problem too when I wake up and just feel blah so feel like a cup of coffee will help get me going. So after a bad day feeling very lightheaded, I did notice feeling worse after the coffee. It’s usually not that evident but it’s clear it does have an effect. And when I skip on the caffeine completely I get a painful headache. I am going to try to cut down to half calf for my one cup. And once I get used to that maybe then try to skip it altogether. It’s a very delicate situation.
Thanks for all the valuable experiences being shared.

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Agreed although I was positively discouraged by consultant. Less caffeine reduced head pressure. I titrated down over several months to one caffeinated and two decaf tea. I only ever drink a weak decaff coffee occasionally anyway, must be more than twenty years since. I’m no coffee addict. It was cutting out the last daffeinated that seemed to have done it for me. Of. Of course, although I (since recently) started getting an aura, I don’t have the headaches. I seem to have vertigo in place. Helen

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I am drinking decaf now, sometimes I pour a bit of caffeineted to it. But a good alternative to the feeling of need something to get me going is a type of herbal chai tea, it has a very strong flavor (with ginger/ cinnamon/ cardamom).
Here is the link to it, I love it (James @turnitaround)

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Cardamon Cinnamon
More recommended teas here
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That sounds positively yummy! That’s going into my Amazon cart for sure. :coffee:

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My favorite!

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