Hi everyone,
Any advise on drinking decaf coffee and tea, if you suffer M A V
For six weeks now I’ve excluded chocolate, tea coffee, all alcohol, cheese, Chinese and Indian foods and foods with msg, and also all processed meats
I’ve felt no difference so far still dizzy and still had migraine headaches, the headache lasted 10 days but may because I reduced my propranalol, I’ve upped it again to 40 mg a day.
I’m really missing tea and coffee .
I really want to go to costa coffee today and have a decaf soya cappuccino ( minus the chocolate sprinkles unfortunately!!).
Any suggestion advice on decaf drinks .
Thanks
I’m naughty and don’t really follow any diet strictly. I’ve only improved with time and on meds I don’t have the migraines anymore (though I get the very occasional whopper of a headache).
The one thing I do exclude almost completely is alcohol, but I do drink max 1 cup of coffee some days. I’ve occasionally found a milky coffee is good for getting rid of headache pain.
I drink herbal tea instead of caffeinated tea and never drink coke. I bought a by-the-cup boiling water dispenser/funky kettle which I use very regularly.
I enjoy Chinese and Indian take away and don’t correlate them to any relapse.
Thanks again James, I had a decaf tea out today with soya milk… didn’t have the coffee, I’ve started the magnesium now so let’s see if it works… are you still suffering from vertigo? .
It’s been 11 weeks for me now…my neurologist said it will go with time but does take ages, he wants me to be as active as possible do the vestibular exercises, take the vitamins he recommended, and hold off meds for a while… just so scary reading that people have suffered on here for years. I suppose everyone is different and everyone’s symptoms are slightly different, I am off balance only when I upright, I’m ok while watching tv and sitting, I’m ok when laying down and as a passenger in a car and I have no dizziness when driving, which I find bizarre.
I had no signs of this coming, just woke up dizzy one day ,but have suffered migraines for 7 years.
I do still have vertigo, that is I have a spectrum of vestibular dysfunction ranging from imbalance, light-headedness and artificial light discomfort at varying levels depending on the day.
Yes I’m only ‘off-balance’ when on my feet walking. Running & cycling, taking the bus or driving are non-issues.
I am usually 80 to 90% normal most days but have the occasional nasty relapse, but my recovery time seems to be 1 or 2 days now, whereas it used to take a week to recover a nasty turn.
Before meds it got the point where i could not watch TV or use a computer and I started to have visual hallucinations, especially around artificial light where the floor would rock in front of me. These symptoms resolved promptly on low dose amitriptyline.
Hi Nad,
I’m not prone to actual migraine headaches, but I have the vestibular problems of always floating, daily “regular” headaches, and dizziness. I was diagnosed in April with MAV and tried the migraine diet. I quit caffeine for 3 full months. When I carefully tried to add it back (1 cup of coffee on a day when I was feeling well), I felt horrible within 3 hrs of drinking it. I now drink 2 cups of decaf every morning, and I don’t get that shaky, horrible feeling. Yes, I miss a good strong cup of coffee, and I still have one every now and then, but it makes me feel so bad, it’s almost not worth it. I’m not on any meds for MAV, but I have been taking 400 mg Magnesium, 400 mg B2 and 375 mg of Feverfew everyday, and I actually feel good! I added chocolate back into my diet, along with most of the supposed bad foods on the diet list. I stay away from MSG & nitrates, and of course, the caffeine.
What’s interesting to me is that I started this journey to get rid of the tinnitus that I’ve had for as long as I can remember, but nothing has helped. At least I’m not floating and dizzy every day, which is a welcomed change! But I do wish I could figure out the cause of this tinnitus!
Good luck finding what’s right for you. If I’ve learned anything, it’s that we’re all different.
Take care,
Laura D.
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I’ll second that!!
Hi Laura thanks for your reply.
I tried decaf coffee today after not having a cup for a few weeks, and I really didn’t enjoy the taste.
Bought some caffeine free red tea today, which was lovely, had it with almond milk.
Glad you are feeling somewhat better, and have reintroduced some food,
I’m still craving chocolate I’ve been 6 weeks without it now!!.
All the best Nadine
I’m massively into Ginger tea right now. Chamomile doesn’t quite feel spicy enough.
I used to crave coffee really badly but wanted to avoid decaf as much as possible. I get this barley coffee, I’m not going to pretend it’s like having proper coffee, but it has a coffee ish taste. I drink redbush tea with oat milk- not too far off tasting like a proper cuppa!
Barley coffee? Mmmmmm might try that, thanks!
You can pick it up in health food places. I got a nicer one off amazon though. Apparently they drink it in Italy and call it orzo coffee. You can get it for cafetieres and everything!
My neurologist put me on propranolol first & it was the worst thing ever…I am now on 75mg of Effexor daily & this has eliminated all my vertigo (which was major !) but I still get headaches daily…sometimes they are worse than others… I am naughty & still drink coffee (2 cups a day) & I know that this aggravates my migraines as they come on immediately ( left side of face ) …I have started taking Feverfew again (I used this many many years ago with success but I didn’t have vertigo at that stage) so I will see if this has any positive effects…ask your doctor to try you on Effexor at a low dosage,this is typically used for depression & anxiety so has a stigma attached to it… my GP was unaware of the alternative use but knew my specialist by reputation & was impressed at the use. good luck !
Sorry to chime in here but I just want to check if anyone else gets this with coffee or energy drinks since their MAV started.
I am a big caffeine junkie in general and tend to have a few cups a day. I’ve cut down since the MAV began for me but I do slip. I’ve started to notice that if I have any caffeine then about the time I start coming down from the caffeine I feel really crap. Not just with physical symptoms, but my mentality. There’s been periods where I’ve had more than two cups in a morning and come lunch time I’m balling my eyes out and feeling super low and dark about my whole situation. This tends to settle later in the afternoon and I feel fine again by night.
I NEVER used to get this and since the MAV it’s been a consistent feature of caffeine consumption. Anyone else or any ideas?
Hi Puddletroll,
Did you get any side effects from the Effexor,
Did it make you feel worse to start with?.
I feel OK on propranalol, and have increased the dosage over a few years, I take 40 mg in the morning.
I take them for anxiety and they also help to reduce the migraine attacks.
I’ve never had vertigo before this episode and the migraines I get are pressure headaches on top of head no aura or sickness.
I’m scared to take meds as most I’ve tried in past for sciatic pain, had bad effects on me .
So glad it works for you though as being off balance all day is hell.
I tried to go clothes shopping today and it was awful, couldn’t concentrate on looking at clothes, it took all my concentration to stay balanced…online shopping for me tommorow!!.
I wake up feeling awful most mornings, I get anxiety as soon as my eyes open, but I also feel a lot better by afternoon/ evenings…I have not linked this to coffee and I’m sure my vertigo/anxiety is hormone related.
I have now given up coffee tea chocolate wine and cheese,
I’ve started drinking red bush tea…which I like…still craving chocolate after six weeks…nearly caved in today, but if I get that taste there will be no stopping me.
Why don’t you try Orzo coffee that Scottl recommends he gets it from Amazon it’s caffeine free.
I believe caffeine is a big no no. I was told by my doctor not to even have decaf- or if absolutely necessary, no more than one or two cups (decaf) .
Hi Scott,
after you mentioned barley coffee I looked it up and bought a jar of barley cup from Holland and Barrett made it with almond milk its really nice and taste a lot like instant coffee.
thanks for the tip 
Good to hear. Enjoy!