Loved your detailed post. So very informative. Thanks. You may find this article of interest.
That’s refering to migraine, but not specifically MAV?
However, obviously there are lots of parallels.
I was struck by this statement:
“The best strategy in treating chronic migraine is to completely stop all painkillers and all caffeine as an abrupt withdrawal”
So that means NO (black or green) TEA, Helen!
Certainly would. That’s why I plumped for the John Hopkins Diet to struggle with instead! Helen
In all seriousness it would be interesting to know how many success-ish stories on this thread conform to caffeine free/painkiller free. I know @jojo65 still takes caffeine but not about the others. Helen
Yeah i still have tea…sometimes decaf and sometimes not. I LOVE tea!!
My fear with that is that you are reducing the benefits of the medication as well as potentially having to take a higher dose to make up for it.
It’s lovely sure, but if you have MAV it ain’t doing you any good, I suspect.
Oh don’t worry, I’m as weak as anyone else on this front - I drink decaf coffee (barista quality, not the instant stuff!) … but suspect that it still has plenty of caffeine because it tastes so damn good!
And the thing is James i know for a fact caffeine will make my nose pulsate but still drink decaf tea…a lot of it. Im addicted to tea
Hi Helen, thanks very much for the article, I hadn’t seen it so I’ve just read it. Interesting they hope to see 28 Crystal clear days per month… Gosh how amazing would that be…
As an aside, I don’t have any caffeine at all and only take a painkiller once, twice per month at time of month, when headache pain would hit an 8 out 10, other than that it’s cooling strips or ice hat. On day 5 of an increased dose and its causing some headache so hopefully this is a good sign, have to try keep moving up later this week so . Thanks again Helen.
Yes, I thought of it as soon as I read your neuro’s aiming at 50% crystal clear days! Perhaps the two neuros went to the same med. school! Helen
Same here Jo. I read this article by Dr Silver years ago soon after diagnosis of MAV, and I tried to quit. Cold turkey. Lasted less than two days. Couldn’t sleep. Grumpy as hell and twice as dizzy as I thought possible to be if you were already 24/7 dizzy anyway! Gave up. I never drink alcohol, never touch chocolate or oranges or ‘proper coffee’. Occasional weak decaf instant but I’ve got to have TEA. Aldi do acaff they describe as ‘caffeine free’. I’m currently chasing them about that. I agree with James it could be beneficial BUT… Helen
Everyone has at least one nemesis. You wouldn’t be human otherwise!
Im going to my office xmas party next week and will be eating things i shouldnt and drinking things i absolutely shouldnt. But i have some quality of life back and going to make the most of it!!!
Enjoy it. If you are as much like me as it often seems, you’ve got that evening and the next 36 hours before all hell kicks in! Enjoy! Helen
My dizziness subsided considerably when I gave up caffeine and my pain also improved when I quit pain killers. Not that it was easy. Both got worse before they got better.
Teeccino is herbal tea that tastes like coffee…they use chicory…addicted to it…not sure James if you have this one on your amazon product list
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|More recommended teas here|
@Jojo65 I was wondering how you were doing ! This is amazing to hear ! Gives me so much hope that we can all get there !
Your post just reminded me. We do have Camp chicory and coffee essence. Liquid in bottle. I’d almost forgotten it existed. My Dad loved it. Much was drunk during the War. I think because it’s already sweetened (I could be wrong there, it’s years since I drank any) but it saved rations. It makes lovely coffee flavoured sponge cake. Just checked, it contains caffeine free coffee essence. It’s old, goes way back but not sure it’s universally available, Helen
It took me about 4 months to feel 99% with venlafaxine. But once I reached that point, I felt great! I have only had one breakthrough MAV since starting Effexor 37.5 mgs. I consider myself one of the lucky ones. It has been 2 years since my first MAV.
Wow!!! Thanks for lettting us know how great you are doing…i certainly hope i get the same results. Im about 70% and been on 37.5mg for just over 2 months. Bearing in mind i have had severe MAV for 4 years it has some work to do!!!
Great to hear you are doing so well. The experts do reckon 4 months is about how long most preventatives take to really kick in so you’ve certainly proved the point there. Hope you continue to do well. Do you do Migraine Diet or/and restrict caffeine may I ask. Helen