Caffeine confusion

I tried the “Heal Your Headache” Migraine Diet for several months (I think like 4 months total) and noticed no benefit. This included eliminating all forms of caffeine. Now, I’ve stopped the MAV diet and re-introduced limited caffeine back into my diet. By limited, I mean 2 cups of decaff coffee/day and maybe an iced tea or two on the weekends. I’ve read some people say to remove all caffeine and others say limit caffeine to reasonable amounts, i.e. don’t drink 4 Red Bulls in a night, etc…:slight_smile:

Anway, I’m wondering how important the caffeine thing is. Like I said, I cut it out for 4 months or so and noticed nothing. I don’t have headaches with my MAV, just 24x7 dizziness, rocking, brain fog etc…

My morning 2 cups of decaf are one of the few things I look forward to each day :frowning:


We are all different so you are one of the lucky ones that can have a couple cups of decaf per day. I say…if it doesn’t bother you…go for it! What about regular coffee with caffeine…does that bother you?


Tekksan - have you been evaluated for any vestibular conditions? Though, even with inner ear conditions the recommendations and diets are really similar to MAV. I was misdiagnosed with Meniere’s back in June, but it’s really good to get the hearing and balance testing evaluations done as well if you haven’t already. Do you take anything over the counter such as meclizine? Also, it might not just be the coffee but something else you’ve missed in your diet. Dr. Buchholz doesn’t recommend eliminating tomato products, but I know plenty of migraine people who have problems with tomatoes and also salt. (I personally still miss any form of coffee and hope someday to be able to have the occasional teeny tiny cup of decaf). Are you on any prescription medications for the dizziness??


a full cup of caffenitaed makes me feel too jumpy but I typically don’t notice a lot in the way of MAV


i’ve been tested several tmes for in er ear issues. only one doc out of like 8 said it was Menieres but he was a lazy type doctor-my hearing is normal even after 13 years of this and my balance etc is just a bit off also i dont have tinnitus or episodes of severe vertigo.

i guess i get confused by the diet because my issues dont seem to get worse or anything after eating anything or drinking decaf. I’m pretty much the same more or less though changes in weather bother me. i do use motion sickness pills sometimes when i fly or take long car rides when I’m not driving-i’ve always had issues with motion sickness which I’ve read is common with mav

what happens to you guys if you tried to drink some decaff??

Hi Tekksan - you’ve been dealing with all this a very long time indeed. Wow. The only comment I’d make about the food stuff is that some foods/beverages/additives, etc. can cause delayed reactions due to either food allergies, food intolerances, or food triggers - they’re all different dynamics actually. So, keeping a food diary was the only way I could pinpoint problems with things I was eating/drinking - and all of them were things that I like. Bummer.
Anyway, the last time I had decaf I became dizzy within 20 minutes. I’m with you - with all that I gave up, and with all the changes and unpleasantness this condition brought to my life, one of the things I looked forward to was that simple cup of Pete’s decaf coffee first thing in the morning. Now, nothing but hot water. Ugh. MAV is a bitch. However, I’ve been told by some of my migraine friends that they were able to return to a bit of coffee consumption later on… A person can a least dream!! I am really grateful for my topamax, though… kinda like Santa came early.

I was told by my Dr. (Priesol at Mass Eye and Ear) that I should only drink water filtered or Swiss water filtered decaf. Sometimes it is the chemicals used in the decafination process that trigger a migraine. I use Caribou brand decaf and it is delicious. I have a Keurig coffee pot and can order Caribou decaf in the K cups online. It satisfies my coffee crave, tastes great and I have no dizziness from it. Give it a try, might help.


I’m dizzy all the time regardless of whether I drink coffee or what I eat thus I conclude that it is unlikely I suffer from food-borne triggers. I guess in that sense I’m lucky.

Hey, Tekksan, I did think of one other component to decaf/coffee consumption. Joan’s point about the chemicals is rather a good one as well. You might be dealing with some low blood sugar and not know it. I noticed that even when I wouldn’t get dizzy exactly from decaf, my blood sugar would plummet before it was time for another meal. I’m supplementing with chromium piccolinate which stabilized blood sugar as is also used by diabetics. Just a thought. Frankly, I haven’t gotten up the nerve to try decaf again, but I like Joan’s suggestion about the Caribou decaf. Sadly, I am still rather secretly obsessed with having some little treat like decaf (since regular coffee is out of the question) just because I’ve had to give up soooo many foods due to food sesitivities/intolerances, and now the da*&%ed food triggers!!
Hang in there - Let us know how the Topamax test goes!

Hi Tekksan,

The advice I was given by a consultant who is quite fanatical about the “no caffeine” thing (even no chocolate) was that up to three cups of decaff per day were ok. I figured no need to deprive myself further and have been happily supping my decaff tea ever since.


Bizarrely, even decaf is out for me. I tried that route – the Swiss water version – from a really top cafe and STILL I got the reactive headache and aches and pains but nothing like it would have been if it had been the full monty caffeinated version. For some, decaf is still bad news according to Buchholz’s book as I recall.

Yep, sadly Scott… I haven’t touched even decaf for awhile, either. I’m just getting evened out here so I don’t want to rock the boat yet. I might try again in a few weeks but it wouldn’t surprise me that coffee itself is a food allergy or intolerance much less a trigger with even a tiny amount of caffeine. Oddly enough I just want something hot that tastes like the black brew to sip in the morning… makes me feel like a “normal” again. Guess that’s just too too much to ask from the Universe/God/my whacked out brain :frowning:

Hey Gail – you should check out or order that dandelion/ chickory mix I mentioned a while back. It really will make you feel like you’re having a coffee again without sending you to Pluto and back – and it tates really good. Believe me because I was a real coffee snob before. :lol: It never messes with my head but can cause a bit of IBS if I have it too strong, so I go with a milkier version and all is good. Let me know if you need the link.


Hey, Scott - I couldn’t figure out how to buy it online from that website… I must be a real dolt or something. OR, my Dopamax was working overtime that night. Could you give me the link again??? I might as well give it a try. I like the fact that you were a coffee snob. Make matters worse, my daughter works for a major coffee chain and our house is stocked with all sorts of fragrant brews. AAAAACK. I feel like I had to give up crack cocaine or heroine or something. I am truly obsessed with replacing the black brew. Thanks so much!

don’t know if caffeine is one of my triggers yet i don’t think so - i did give up the lunchtime iced tea just in case been drinking it for years. I do still drink naturally decaffinated coffee though - yeah it’s an addiction love the flavor and the smell - everyone that comes into my office loves it too :slight_smile: hope it’s not a trigger don’t know yet - given up a lot of stuff lately though.


i tried giving it up for a few weeks and didn’t notice a difference, i’m dizzy all the time anyway!

Gail –

Here’s the link but it’s not clear how you can have it shipped overseas. Maybe you can email the company and ask who ships it out of Australia.


Most decaf coffee still contains caffeine. If you find that avoiding decaf coffee doesnt improve your migraine then I think it is STILL important to avoid it. You probably dont feel any better because you are still above your threshold limit. I think you would feel better if you tried medication and avoided migraine triggers. That would lower the amount of triggers, and raise your threshold limit.