What is the name of what you drink Scott? And where do you purchase it?
Hey Timeless,
I use this one but think it’s only available in Australia. You could order it I suppose?
http://www.bonvit.com.au/cgi-bin/bonvit.cgi/catalogue/info/index_html?25
I pack it into one of those coffee makers that you put on the stove and percolates away. It’s great with milk all frothed up.
Scott 
The painkillers I have been on since this started 20 years ago, have had caffeine in them, and, all this year, I have been trying to get off the caffeine, although I havent had it in coffee or tea for years. The first time, I went on the nurofen, I got a load of vertigo, I dont know if it was the nurofen or coming off the caffeine. Went back on it briefly, then, started again. I have now been 7 weeks on no caffeine and the major migraines have really lessened. I have had two in 7 weeks as opposed to 2 a week.
Now from what Scott said, I am wondering whether to cut out the decaf tea. Still have a dull head and dizzyish every day, am taking paracetamol and codeine for that.
Christine
Apparently there are certain chemicals used in the decaffeinating process that may affect particularly sensitive migraineurs.
Brenda
Actually, they use different sweeteners, which could obviously make a difference in symptoms for you.
I was told by my Dr. at Mass Eye and Ear to get decaf that is water filtered. The chemicals used to decaf coffee are big triggers for migraine. I use Caribou coffee, it is water filtered decaf. I use it in my Keurig coffee maker and I order it online. I think Paul Newman brand also makes water filtered decaf. It tastes pretty good. But I miss cafeine. 
Thanks for the information. 
I can say this about cig smoke. I recently had a colleague over as a house-guest for three-four days. He’s getting over major surgery, and was advised not to worry about quitting smoking until he’s fully healed. The idea is to avoid adding the stress of crutch removal at this time.
We palled around for 2-3 days, Rn preferring to do the driving. Every time he starts his car, he has to light up. He held his cigarette out the driver’s side, I imitated a pooch and hung my head out the passenger side until he was done. Even so, I’ve been headache-y and a bit nauseous, on and off, for three days. Some weather effect, some pollen allergy, but I’m rather convinced from this naturalistic experiment that even that modest amount of cig smoke served as a significant trigger.
Not sure there’s ever any gentle way around it. I wouldn’t ever have classed myself as a high caffeine consumer as (luckily for me) I don’t like the taste of coffee. Still got a stonkingly horrendous headache for a week or so when I went caffeine cold turkey however. Think it’s maybe one of those things you just need to bite the bullet for…
I stopped all caffeine when I was ill the first time but then relaxed this once my condition had stabilised, just the occasional cup of caffeinated tea if I was out at a friends house or a restaurant (it was so lovely not to have to be a freak and take my own tea bags everywhere with me, sigh!), plus of course chocolate crept back into my diet. Did’nt seem to have any obvious effect in moderation until I went to stay with a friend for a long weekend and drank loads and loads of the stuff at which point I did feel very vertiginous again which scared me right back onto the wagon for a while.
Again things slipped with time and now I’ve relapsed, I’m sure there’s much more to it than caffeine, but it does make you think.
Oh, and just to add to the discussion about painkillers, different docs seem to have different levels of acceptance for their use, Dr Silver recommends six “episodes” per year (ie if you have surgery and need to use them regulalry for a week that counts as one epidose) whereas obviously some are happy with more frequent use, whereas Dr Bahra seems happy with a couple of times per week.
Apologies if you’re all fully aware of this but it’s the frequency and not the actual dose of these drugs that causes the problem so if you find that you do need to take Ibuprofen for example then it’s best to take 400 - 800mg in a single bumper dose in an attempt to abort to attack than to take a miserly dose as you’re trying to avoid taking a painkillers, but then to keep repeating this every six hours because it’s ineffective (and to take it with domperidone if you’re having a “traditional” migraine episode).
I too quit cold turkey, in my case from a heavy-duty cocoa/choc habit. I mean, I would happily chomp a bite or two out of a bar of baker’s chocolate. Most days, I’d make myself a cup of cocoa “sludge” (slurry)–with skim milk, doncha know, to save on calories and saturated fat. I don’t see where tapering would have had any advantage for me.
For those looking for coffee alternatives in the US there is something called Postum which is available in most grocery stores. It is a grain beverage used by the Mormons as a coffee substitute. It’s OK but I prefer herbal teas. My doc took me off coffee many years ago but going caffeine free is still new to me and I am unable to notice a difference in just these two weeks.
Nice call, Kenny. I used to enjoy Postum, but haven’t bought it in years.
In reply to Tammy’s question about identifying triggers -
Have you checked out the “MAV Fact Sheets” section that Scott put up here on this website? There’s one very good 2 page handout called “Migraine Triggers” that summarizes what the categories are and examples of each.
I bet many, if not most of us never have a complete understanding of our “list” of triggers - and then it may not be a matter of just presence vs. absence, but questions of quantity and degree may enter in… like most things associated with our condition, it’s NOT simple!! Is a little chocolate or coffee OK? Will a gradual change in the barometer do anything, or just a rapid change?
Reading over this thread has caused a lightbulb to go on over my head - the increased number of headaches I’ve been having may not just be due to my backing down on my dose of Topamax (done due to side effect problem at 200 mg, but 100 mg isn’t too bad). I’ve been having some joint pain that I’ve been treating with daily - dah dah DUM! - ibuprofen. Think it’s time to see the doc about the joint problem. I stopped the ibuprofen yesterday (moist heat helps, but…), and my headache comes and goes (never a brain-splitter, fortunately). But this joint thing has gone on long enough that I probably should get it looked at, and maybe there’s something else I could take for it that wouldn’t affect my migraine brain.
Or maybe not! :?
Good afternoon. I realize there havent been many recents posts on the subject of caffiene, but I wanted to post that I have had good experience with reducing (didnt give it up all together) the amount of caffeine have in my diet. I was diagnosed this past Novemember, after 8 months of no doctor getting to the bottom of what I was experiencing. A Doctor at Mass Eye and Ear in Boston diagnosed me, and suggested the Migraine Diet (which did find posted here myself). I cut down to 50% Caffeine coffee for my morning needs and have switched to decaf for the rest of the day. I only allow 2 small cups in the morning - that is all. I did have an occasion at work where I thought - “what’s one cup going to do” … well I found out when I had a terrible dizzy spell a couple hrs after it! The Doctor also told me that Paul Newman’s Own Decaf coffee is the one brand he knew to be “water filtered” as opposed to Chemically filtered to reduce the caffinie. I also found Sam’s Choice at Wal-Mart that is water filterd and pretty good! Finally, after the diagnosis and starting Nortriptyline and the diet for going on 3 months now, I am so much better, I wasnt able to drive for months on end, because the dizzy spells were so bad. I also quit smoking 6 months ago, and from what I have read - smoking with MAV is a NO NO! Just wanted to share a positive experience - to know they are possible!
Hi Shilo,
Well done on making the changes you have made. Quitting smoking is no easy feat and on top of that you’ve altered your diet and have had success on nori. Great to hear.
Another name for the decaf prepared using a water technique is known as “Swiss water decaf”. Unfortunately for me there are other components even in decaf that trigger this junk. I don’t want to rain on your parade but have you ever tried NO coffee at all to see if things improve further? Just a thought.
Best … Scott
Hmm, I too had my slapped wrist on this topic just before christmas.
Having been caffeine free for several months (max 3 cups decaf per day, no caffeinated tea/coffee/soft drinks, no chocolate etc) and still struggling with this illness (though objectively, my symptoms are much less severe) I was questioning whether I was depriving myself unnecessarily. Visited my auntie before xmas who made me a cup of caffeinated tea - I didn’t want to be rude and thought, well what’s one cup going to do?.
Answer. Woke up the next morning feeling like it been run over by a truck! Pain, dizziness, totally wiped out.
Not doing that again…
It kind of makes sense really, my Doc talks about this condition in terms of a hyperexcitable nervous system. Caffeine is a nervous system stimulant and thus works with this underlying condition and opposes the action of the various meds we’re all on.
Hx
Just weighing in on one of my favorite topics. I quit drinking regular and decaf coffee between September/October 2010. It did not help at all in eliminating or decreasing my dizziness. However, the large benefit to me was the knowledge that after 30 years I no longer needed a caffeine fix in the morning, and I also finally knew definitively that my dizziness was not related to caffeine consumption - something that I would not have known if I had not eliminated it altogether. It took me a month just to feel awake in the morning, and I suffered from all sorts of withdrawal symptoms (including horrific headaches, muscle achiness, fatigue, etc.). Ironically, I still miss drinking some form of coffee every morning. Maybe in some mythical future that can at least happen occasionally. But for now, it was a great victory for me.
Gail
Gail – did we ever chat about using that dandelion/ chickory mix? It’s VERY good and makes you feel like you’re having a coffee. I was a real coffee snob and I like the stuff. S
Hi Scott - sorry about all the disastrous weather in your country down south of you… (right?). Anyway, you suggested the dandelion beverage and I e-mailed one of the retailers online but they never answered me. I couldn’t figure out how to purchase it otherwise because it’s not carried by amazon.com. It’s not sold here in California, but I’d try anything to stay away from the Black Brew…
Gail