Dear fellow Mav sufferers,
I had a black coffee the other day (after 6 months of being coffee free + trying new meds) after having woken up with a bad headache and feeling like crap. Within 30 minutes my headache had disappeared and I was about 80% functional. I was able to have conversations, felt pretty clear in my head and was less imbalanced?
Can someone explain to me the effect coffee has on the brain and if this is a pretty clear indication of me having MAV?
With best wishes,
I think it’s fairly simple: it puts your brain in a more excitable state so you are more at risk of getting a migraine.
Thank you turnitaround! But why does the coffee improve my symptoms so much more then any medication I have tried?
well, its funny you should observe that, because I’ve had the same experience. Whilst on Amitriptyline which pretty much stops the migraines (but does not prevent all vestibular attacks) I have found coffee to be at least enjoyable and sometimes makes me feel better too :). I cannot explain that tbh.
btw my personal opinion is that though migraine as the perpetrator of MAV is a current popular medical hypothesis, I’ve not read any evidence that proves migraine is causing the condition though. My personal hypothesis is this is a condition related to physical disturbance in the inner ear that is less severe than, say, menieres, but nonetheless causes debilitating symptoms in the patient albeit with no significant hearing loss. In my view the migraine is one of the results, not the cause of the condition. I note migraines are also a regular occurrence for sufferers of menieres and BPPV. I was very disappointed to learn that current scanning techniques cannot resolve the inner ear with sufficient detail to rule out a physical cause, therefore to me this diagnosis is pure dogma, based on observations and medical response only and there is a lot of uncertainty around it. Hain notes that Menieres and MAV are very similar and may be part of the same spectrum of conditions. This is very compelling.
PS I’m aware this opens a can of worms, but I believe we are owed a reasonable and proper explanation for this horrible condition, not simply fobbed off with drugs! I know my consultant is doing their best but in my view the science is severely lacking and this needs to be resolved asap.
Thanks for your input - I am on Ami at present 20mg but feel too sedated in the morning to keep going. My consultant advised to change to Nori and wean off slowly over a month. Next step will be Propranolol and or cranial botox.
The whole MAV thing makes no sense to me as I am unwell for nearly 2 years now and actually getting worse - how can a brain be so “out of it” to cause such symptoms.
Still - I am so surprised by the effect the coffee had on my wellbeing - its slowly weaning off now but still had some pretty good 5 hours were I was at least function-able compared to the morning hours.
Many Thanks again for your message,
best wishes Johannes
Yes I am slow in morning but better if I take the Ami earlier in the evening. My experience with Propanolol was not good. On very low dose it really slowed me down, much much worse than Ami. Also I’ve found Ami better and better over time.
Best wishes to you too!
I think that even though caffeine may initially help the migraine by reducing (constricting) swelling around the agitated blood vessels in the head, it causes vasodilation (increased vessel swelling) as it wears off. This is the “rebound” effect. So caffeine contributes to headaches in the the future. And triggers are cumulative and additive. If you are having caffeine in your diet daily, then you have raised your threshold of excitability and when unavoidable triggers occur, you are less able to handle them. Also, caffeine is a diuretic and dehydration is a major trigger. Many people say they are getting enough non-dehydrating liquids during the day but unless they write down the ounces for a few days, they may not be getting enough. I sure do miss my half a cup of coffee (it does wonderful things) but I am so afraid to resume drinking it as I now feel much more in control. Not carefree, but more in control. Good luck to you. (vertigotalesandtastes.blogspot.com)
Caffeine is an interesting one for sure. I used to be an avid tea drinker until I started the VM diet but cannot drink it at all now, I got through half a cup on Christmas day with my usual nut milk and I felt really really sick. I was in a restaurant where they didn’t have fruit tea so I thought one cup wouldn’t matter but it did big time. I usually have a cup of coffee in the morning, I used to have 3, but I have noticed that although it wakes me up and I am more alert it is also heading towards making my VM symptoms appear more noticeable. So no more caffeine for me, I will just have to walk my dog in zombie mode!
Thats exactly what my consultant told me! Thanks for the input.
Its just so interesting for me that a cup of coffee can improve my symptoms so much. No painkiller nor preventative was able to do that. It just explains to me that there must be a chemical imbalance that is causing my problems - I was never a migraineur before this happened out of the blue in March 2015 - it was just a very hectic and busy time…
So I am just reading about the mechanism coffee has on the brain - very interesting.
Meaning you have caffeine and pretty immediatly you get VM symptoms? In my case it gives me good 5-6 hours of improvement…
If you are looking for a hot-drink substitute for the morning (or any time) I have found two. Mt. Hagen decaffeinated coffee is pretty good. It is CO2 processed decaf, as opposed to using chemicals. You can buy it at Whole Foods or at Amazon (same price) and perhaps elsewhere. Remember, not all decafs are the same. Caffeine levels vary and some companies use chemicals. You want CO2 or water processed. Vertigo Tales and Tastes: S G Blog Post: CAFFEINE The other hot drink I have all day is Rooibus Tea. Make it dark and put in a little Agave sweetener. Yum. Do not buy Chai Rooibus or Vanilla Rooibus, etc. Just Rooibus. Twinnings and Numi are two brands that make it. It also goes by “Honeybush”. Also, Vitamin B12 gives me a little boost. I have to take it early in the morning or it will wake me up at night. I do not know why but it happens every time. Good luck to you. (vertigotalesandtastes.blogspot.com
Yes, that is exactly what happens to me. Just another annoying thing!
This is random but I was going through a bit of dizziness and slight headache today. It was on and off but i had to go for a long drive later in the evening. As soon as i start the damn car and get going i start feeling like crap, of course! Wife wanted coffee and i have been completely off of it for the last 2 months. I decided screw it, i wanted a damn coffee and to feel like a human again. 10 min after i had a cup, i felt so much better. I found this very odd as coffee is apparently a big trigger in the migraine world. Anyone in here actually have a positive effect from caffeine or coffee?
I am almost sure I remember @nin commenting likewise quite recently. Coffee gave her a short term boost. I am sure, somewhere, I have read a detailed explanation for this but details currently evade me. @andy might have some ideas too. All linked to the caffeine no doubt.
When it comes to diet MAVers vary considerably. Much like meds what suits one is anathema to another. Personally I found an overall improvement in head pressure once I moved almost completely over from strong Builders Tea to decaff however soon as I quit the last remaining daily cup of caffeinated tea I started experiencing bad room spinning vertigo like I had not had in years. In the end I just stuck with the one daily mug of proper tea. It’s all linked up there somehow somewhere. Helen
Both to being a trigger and beneficial. Well, it’s beneficial in the short term after you get the initial hit but I’d stay away. I do drink coffee but with caffeine only 2-4 times per month.
Coffee is a stimulant so it activates fight or flight, it raises blood sugar and also dehydrates / vasoconstricts so it’s a MAVers worst enemy. You’ll get a delayed increase in symptoms.
Yes, I’m heavily medicated for mav but on the occasion where nothing will reign it in, I’ve had experiences where a strong coffee actually helps. I stopped all coffee for 3 years but last year reintroduced it. I have one cup daily early morning and if it were a day where head pounding I’d have a 2nd.
I think it’s great you had this experience today because you can place it on your list for rescue meds/options. If you’re going to have make sure it’s good quality and enjoy it
The neurologist told me to cut down on caffeine (I maybe had 3/4 cups of tea or coffee a day at the most) I did, it made no difference. But I have had cravings for coffee during an attack, dark chocolate too!