Hi all, I’ll go by Don here
My story so far sounds pretty similar to a few others, but reading all of your experiences have helped me tremendously, so I want to pay that forward with a post of my own.
I am an early 20s male college student with no known health issues whatsoever. At the time that my symptoms started I had never been in better shape, happier, or healthier feeling in my life. I started having issues with what I now believe to be MAV/VM starting in September 2018.
For about two weeks I had horrible daily stomach aches. I think I had a very low fever during this time as well and felt somewhat flu-like, so the running theory is I had some kind of virus. In that time I had the worst headache of my life, with a very traditional migraine pain pattern, that completely cleared in a few hours. Once the stomach pain started to subside, I woke up spinning one morning and have not really stopped since. I was bed-ridden with vertigo for an additional two weeks, and made the decision to withdraw from school temporarily as I had fallen too far behind to recover.
I moved back in with my parents under the impression I was suffering from a virus and vestibular neuritis and would just need time to recover. The vertigo calmed down for a about a month, but I was left with intense brain fog, fatigue, a mild but strange headache-y feeling behind my eyes, and low-grade dizziness. After that month, more symptoms and much stronger dizziness came, and have stayed.
Now I am dizzy, motion sick, foggy-brained, and headache-y to some degree constantly. It fluctuates, but never goes away entirely. I have much worse episodes at least monthly, which keep me down in bed for a week or two. Recently, I have been having smaller episodes which only last a few hours. During these episodes I am light, noise, and very motion sensitive. Less frequently during the episodes I experience nystagma and the alarming “magneto head” feeling I’ve only seen described here. Outside of the more distinct episodes I experience strange visual disturbances, I perceive motion in stationary objects, and have frequent headaches.
I was first diagnosed with MAV/VM by a headache specialist in december 2018, and have since gotten the same diagnosis from a neurologist and two ENTs. I’ve tried numerous drugs with no luck so far. With input from multiple doctors and resounding reassurance from this forum, I will soon be trying venlafaxine.
I am still slightly hesitant with my MAV diagnosis because I don’t seem to fit the bill when it comes to migraine history. Maybe someone here can shed some personal experience on the subject. My family has a very limited history of migraines, and as far as I know I don’t have a history of migraines at all. I can think of maybe 3 times in my life where I’ve had a headache I would describe as a migraine. I could also treat my body terribly (from a migraineur’s perspective at least) and never have an issue. i.e Non-existent sleep schedule, putting back booze and coffee like there’s no tomorrow, inconsistent meals, maintaining high stress levels and putting 60+ hours/week towards my studies, etc.
However I have struggled with very frequent “normal” headaches and neck/shoulder pain for my whole life. I’ve also had two periods in my life where I would have a horrible headache every single day for around a month. These periods came and went with no apparent reason. With what I’ve learned over the last few months, I’m now questioning if these headaches are “normal” or not.
Regardless, seeing people’s experiences here and comparing them to mine is too convincing, and I am all in on a MAV/VM treatment plan. This site has filled me with hope again, and I am very happy that I found you all.