Eugh. I know deep down I need to give up caffeine to help my MAV/headaches. However it’s my one vice that keeps me going. As a result of my VM my mental health is quite bad, and caffeine perks me up and helps me pretend to function like a normal human!
I need a kick up the butt or I’m never going to get better. I have tried both ways (cold turkey and tapering off) but I have given up either way!
Has anyone else been in a similar situation?
I know the feeling! I LOVE coffee! I gave up for a while. It may not be required forever (2.5 years in I can enjoy again)
I basically explored the herbal teas and to my surprise I’ve found two keepers. There are loads of them so you can really enjoy having a good exploration of them.
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| Redbush | Redbush Vanilla | Twinings Spiced Ginger | Teeccino! |
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| More recommended teas here |
I just feel like a better person with caffeine 
Oh I know how you feel, I’d drive miles for a good coffee. I’ve had to give it up, almost two years now and found two herbal teas that are good. I found at times when my headaches were exhausting I’d slip and have a coffee or a decaf and whilst temporarily I felt good it always caught up with me and affected my sense of balance, I’m hoping ify meds work at a future point I’ll try it again. First few days are hard but were strong people on this forum, you can do it!! Best of luck
I reluctantly gave up coffee when this all started 4+ years ago
The first couple months were difficult. Then after that I found that I actually felt better in the mornings than I did when I was drinking coffee. I could wake up and I’d be ready to meet the day
That being said I do love coffee, so decaf has now become my best friend
first couple of months are difficult? oh god I can barely last a few days without it!
Oh and don’t you dare have MILK in your coffee! 
don’t worry…already lactose intolerant!
Awwww. Well that part is easy then 
I absolutely LOVE coffee! It has a piece of my heart, ha ha. I had to give it up 5 months ago and I miss it dearly. I get so jealous watching my husband drink it every morning 
But right now I keep telling myself it’s for the best and only temporary. I’m determined to be able to have a cup or two in the morning again!
I was having 2 cups of decaf per day until I read on this site’s MAV survival guide that even 1 cup of tea a week is enough to perpetuate chronic migraine. Have a read of it.
I gave up caffeine completely 3 weeks ago and have been MUCH better since, including 6 days completely symptom-free.
Drop the caffeine, I reckon.
I love coffee but I love not being dizzy more…!!!
From this site’s MAV survival guide:
Dr Nicholas Silver in the UK is the neurologist migraineurs see when they have failed to gain migraine control under the supervision of previous neurologists. He is extremely systematic and methodical in helping people gain control. He says the main reasons that people fail – even when they are on a migraine preventive drug – is because patients are still using caffeine in some form (coffee, tea, green tea, chocolate, colas) or they are using painkillers. Some nasal decongestants can act similarly to perpetuate the condition. A chronic migraineur should NEVER use any painkillers – not ibuprofen, paracetamol, Tylenol, or aspirin and definitely not the more heavy-duty ones such as the opiates unless it is an emergency but no more than four times per year. Even one cup of caffeinated tea per week can be enough to perpetuate chronic migraine, so NO CAFFEINE. If you’re using painkillers now, the best way to get off is to go “cold turkey”. Headaches may get worse over the first week and should then ease off. Use other methods to work with headaches such as cold packs etc.
My MAV began 4 weeks AFTER quitting caffeine for other reasons. I have been off it for long periods and back on, and I’m not convinced it is a trigger for me.
interesting
if you don’t mind my asking, why did you quit? did you feel something wasn’t right, or completely unrelated?
I had started having severe panic attacks (on top of pre-existing generalised anxiety).
Did quiting caffeine have any noticeable effect on your MAV?
That’s truly hard to say actually. I’d say at best it decreased incidents of the worst tinnitus but not sure having one coffee did anything bad.
I’m much better now if not symptom free. I regularly have two coffees a day with no issues.
When I was really ill I guess I gave up coffee just because I’d try anything to improve.
Hmmm … sorry to confuse the situation, but I’m now getting the feeling Caffeine is a ‘trigger’ for me.
By trigger I mean it actually increases the risk I get fluid leakage from my ear. This then apparently leads on to potential imbalance and brain fog.
You see I had been doing so well this year and had ‘got my balance back’.
Unfortunately I got a bit cocky and started to relax too much wrt to diet.
I started drinking coffee more regularly and eating dark chocolate (and new my nemesis: chocolate popcorn which is dusted with dark chocolate!)
It may be confirmation bias but it seems to have lead to a nasty relapse.
So I stopped all but decaf and most chocolate and now I’m heading back to being ‘normal’ again.
So now I’m thinking … hmmm … there is more truth in the caffeine restriction than perhaps I realised!
Food for thought! (ahem).
Perhaps you’ve hit the nail on the head with use if the word ‘regularly’. I’ve read it somewhere before. You should treat caffeine as a drug as part of regimented routine. Then if you read the John Hopkins diet sheet it says: under ‘Caffeine’, ‘foods to avoid/reduce’
Two cups containing caffeine per day
‘Do not vary the amount or timing from day to day’.
Maybe there’s something in that? Helen
Yes very true Helen. As with meds the body may adjust to caffeine patterns.
My neurologist quite firmly stated that if I was having caffeine, to be very moderate about it (less than 200mg/day), and to have it at the same time and in the same quantity every day. I very gradually reduced my coffee intake so that I’m off it now. Not sure it has helped me much but the consistency factor was strongly recommended.