I’ve lost my old login, but i’ve posted a few times…
4 years ago i had my first migraine with aura (at 35), it was bilateral and lasted 25 min and went away. over the next 3 months i had 3 more and each one was followed by MAV (dizzy, felt drunk, things moved slow etc). I had MAV quite badly - it led to me sleeping in bed for a period of 3 or 4 months because it was too depressing to be up out of bed and living with MAV symptoms. Every morning I would wake up and feel ‘normal’ for about an hour until the MAV kicked in.
My trigger for the first migraine was optical in nature - bright lights, wearing my contacts for 3 weeks at a time, going suddenly into the light from a dark room, and specifically dry eyes.
Like many of you I was proactive with this, I researched and read EVERYHING i could find, i ended up taking:
- Magnesium Citrate 500mg once a day (twice a day on bad days)
- B2 (riboflavin) 400mg once a day
- Krill oil (two capsules twice a day)
for my migraines and if I forget my magnesium and B2 i can tell the difference within one day.
Now fast forward a few years…
I am slowly getting better. After the migraine I couldn’t go to the grocery store longer than 10 min, I couldn’t drive longer than 10 - 20 min, I couldn’t read books, I couldn’t put myself in crowds or bars - all of these places have a lot of visual stimuli going on - a lot of aisles in the store look the same - bright colored boxes and cans that you have to visually distinguish and isolate, print words were tough because again i had to isolate individual words amongst words that look very much alike, driving was tough because i had to focus so carefully at objects around me that were moving on different trajectories at different speeds…
i ended up buying sunglasses with sidewalls (made for artic explorers) because they did two things… 1. block out the light which i was sensitive too 2. block out the side motion and that would give me more time out in the ‘real world’ before i would get feeling ill and have to return to my dark room.
Now I am able to ride my motorcyle about 40min each way (80min rt) in one day and only feel a bit fatigued… I can grocery shop for an hour… I can take trip on a plane and deal with taxis on both ends… a LOT BETTER!!! and i’m SO thankful for every improvement.
The past few years though I have a few strange side effects -
I go through severe sleep phases - when i’m in a phase i can sleep for 16-20hrs a day, I have very vivid dreams, I am exhausted beyond measure but it’s not the same kind of (yawn) tired you get from a hard days work… I can sleep like this for weeks on end… Waking up but feeling ‘wrong’, usually waking in the evenings, feeling brain-foggy, out of sync, unreal… This has caused me unending annoyance because I lose so much of my time and life, have lost my ability to work the way i once did (I’m a consultant thank god), and I feel like my life is stolen. I saw several neurologists and one mentioned I might have Klein Levin syndrome (sleeping beauty syndrome) but I didn’t believe him.
although i know this will sound bizarre - I have hyper-smell and taste - I find sometimes my sense of smell and taste receptors are way over-sensitive, I am often repelled by peoples breath, odors in the air, etc… My dating life has all but faltered - when I kiss someones skin all i taste is sweat glands - lol…
I am extra irritable sometimes, even suffering from ‘rages’ - things like driving at night - the lights coming towards me when people leave their high-beams on - it HURTS and i get physically ANGRY as if they were doing it to ME on purpose… I am irritable with my friends when I get tired, and very narcissistic.
I’ve become very private. I built a house using ‘introverted architecture’ - it has no windows on the outside walls - instead all windows from rooms face the inside where there is a central pool in the house… I don’t like people to come into my space anymore, I’m very private,it is stressful to me to have company for more than a few hours, and i don’t really date because I don’t like my partners staying the night.
As you can plainly see - since my first migraine I have been a mess… ha… my friends all say I have made not dramatic but at least significant changes… Well these changes SUCK, so I’ve been looking for the reason - I thought maybe i was terribly depressed (sleep) although i don’t feel depressed… I thought the irritability was due to some mood disorder so i researched them, i thought the privacy was again due to social withdrawl and antisocial personality…
Today I was sleeping and it came to me - and I popped awake…
I read someplace that migraines over-excite our brains, some cells in the brain (help me out here) release extra chemicals which damage the cells around them… That’s why anti-inflammatory, certain drugs targeted for migraines, or even drugs like xanax can help - they limit the over-production and damage (please correct me if i’m wrong)… Well what’s happening to me at least is that my brain is getting over-stimulated, then over-excited and when it’s over-excited i get:
- extra sensitive to smells and tastes
- extra sensitive to lights, sounds, irritability
- i then withdrawal into my room and home and i clamp down on letting anyone else in
- i sleep for 1 - 3 days while my brain heals and resets itself.
i also read someplace that when kids get overstimulated, or have emotional trauma they simply go to sleep… this fits my experience completely.
now the reason my sleep lasts for weeks is this:
- i get overstimulated, get some version of MAV and then fall asleep and am out for 1 to 3 days.
- i wake up and think about how much of my life i just lost, so i immediately engage in a night on the town of drinking, too many lights, sounds, stimulaton - or i spend 14+ hours on the computer catching up on my work, or i spend lot of time cleaning the house, running errands buying food etc…
- this overstimulates me again and of course i fall back into my sleep mode
- this cycle is repeated over and over and over - until i finally just take a break from everything and lead a quiet life - then it evens out and i’m MUCH better.
i have proof of this cycle because i keep daily sleep logs and i’ve been seeing that i’m sleeping 16+ hours the first few days of the week, but only 12+ on the weekends… well my shopping day is sunday - and now it makes sense - sundays i’m out and about - get overstimulated - my brain cells get hyper-excited and do their damage - and then i have to repair on the weekdays…
even as a child and teenager - if i would go to Disney, or even the mall - i would fall fast asleep afterwards my brain just felt ‘tired’… so i think the underpinnings of migraine, mav and neurological disorders has always been there.
now i’m going to research:
- drugs that can keep that to a minimum
- try to find out how to ‘exercise’ my brain to see if i can re-hab some of the stuff i’ve lost
anyway - not sure if any of this rambling will help any other MAV people or not - but it’s been a long hard road to get to this realization, now that i have it - i think i can break the cycle by figuring out what triggers this hyper-sensitivity in my brain, and then use the irritability, smell, lights etc to tell me when i’m overdoing it…