The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page

One coffee might be ok ....


Another demonstration that these drugs are trying to hit a nail with a sledge hammer :wink:


I get where you are coming from. MAV should hv its own drugs but wouldnt call my migraine acute attacks ‘nails’, in fact they might have bn more ‘sledgehammers’, they certainly floored me. If you’d told me 5 yrs ago I’d be taking betablockers and using a walking stick I assure you my teeth would have visibly curled! But once this Beast started giving me 8 day long flat out in bed in the dark attacks at the approximate rate of 4 or 5 in 6 or 7 weeks. That’s right just a day or two in between occasionally, had to do something. Much investigation later and set off on betablockers ‘The Cure’ and living in the dark like a mole with dizziness and photophobia 24/7 for months on end, and then the impossible happened. The photophobia got worse! Why, the ‘cure’ betablocker is giving me Dry Eye and the main symptom of Dry Eye is - you’ ve guessed it - Photophobia! Helen


Yeah, I guess the main thrust of my phraseology there was to highlight how they get us to take these neurotransmitter altering drugs to influence some relevant processes, but at the same time this has a shotgun effect of affecting a dozen more :slight_smile:


Absolutely. Drugs are so non-selective. Much more so than a lay person would ever imagine until experienced.

There really should be a better way. Helen


what about decaf?


I drink decaf, seems okay to me. Has like 1/10 the caffeine or something like that.

My journey to Hell ... and (almost) back.

I decided caffeine was a trigger for my MAV some years ago. I was at a uni course feeling perfectly fine and at morning tea had a barrista coffee and a choc cherry slice which was very sweet. The combination of sugar and caffeine did me in. I started feeling very dizzy about 10 minutes later and had to leave. Shortly after that incident I gave up coffee and tea. I do drink decaf regularly though and have come to regard it as just a normal coffee (some barristas make it better than others). I also have Robert Timms decaf coffee bags always with me in case friends don’t have decaf etc. I started having one cup of tea in the morning (tea has some caffeine in it) and then that became two a day and lately I’ve sometimes had three. So far so good and I do enjoy the ‘hit’ of those cuppas! I also drink Rooibos tea freely which is very good for you and has no caffeine AND really tastes like tea but doesn’t have the kick of normal black tea, that’s for sure. I gave up alcohol when it became clear to me that it was yet another definite trigger so my cups of black tea are just about my only drug now …poor me!

(NB from admin: these images link to products members have found helpful and at the same time help fund the site: As an Amazon Associate I earn from qualifying purchases. More recommended products here. Thanks for your support!)

Redbush (Rooibos) Redbush Vanilla Redbush Vanilla (UK brand) Redbush (UK brand)
More recommended teas here


It certainly does! A black tea has between a third and a half of the caffeine of a black coffee. This is all in a table in the Diet Wiki

Yes agree that something very sugary combined with caffeine can be a lethal trigger! I had a total relapse after I got carried away with three coffees and sticky toffee pudding. Oops. In my defence I hadn’t definitively identified caffeine as a ‘trigger’ before this incident but seems it must definitely is.