For the first part of my life, I didn't really ever suffer from headaches, let alone migraines. At least that's what I thought. Not all migraines are headaches..but I didn't know that until much much later.
I was between 18-21 when I began getting my first episodes of vertigo. I wasn't eased into it lightly-it was slamming full force vertigo. Think of drinking too much until the room spins....without the alcohol. In the beginning I would wake to the room violently spinning and being bed ridden all day. In the beginning the docs diagnosed me as "low blood sugar" or "ear infection". I would be given some meclizine and sent home.
A few years later, 1994 to be exact--August, I got to experience it coming on in my waking time. That is not fun. Feeling it coming on and being able to do absolutely nothing to stop it. When these struck I was bedridden. Movement of my head would make me throw up. Movement of any type made it awful.
Sometime after that they seemed to disappear. I didn't have any episodes for years. Prior to that it seemed I would get two episodes a few months a part and then be ok for about a year.
In August of 1999, something changed. My husband and I were out and about and I just felt off. I could best explain it as feeling like I'm walking in the clouds. I guess I could compare it to being "buzzed". I felt light headed and just not right. This lasted several days and I stayed home from work. My hub worked in an ENT clinic at the time and got me in before they opened. I explained it to the doc and eventually she gave me more meclizine and told me to get some rest. (like I wasn't already doing that) . Day 5 it turned into the heavy spins of old and by Day 6, I was in recovery mode. The severe spins ALWAYS lasted a day. The whole next day was recovering from the awfulness of the day before. Yet NO ONE could tell me what was going on.
The next few years I would get a mixture of the two types above. I'd get the cloudy "buzzed" feeling that would last for days or I would get the onset of the violent spins. It sucked. I actually preferred the violent spins because I knew those only lasted a day. The other ones ...there was no time frame. Those were coming with more frequency.
Eventually having enough I began to seek answers. After test upon test, I ended up at a second neurologist with the Cleveland Clinic who specialized in vertigo disorders. My own research and the results of all previous tests knocked out Meiniers and MS. I described the issues to the nurse and when the Doc came in he said to me "Good News. I know what it is!"
Hearing those words was like the best thing ever. He explained that I had Benign Paroxysmal Positional Vertigo (BPPV) , what it was, and all that. I was happy to have a name to it. I was tired of just saying I have a vertigo problem. EVERYONE has a vertigo issue at one time or another and when you have issues regularly, I don't like being thrown in with everyone whose had an ear infection.
I was given literature and exercises to do when I had an episode. I also began learning, things I enjoyed before were now off limits. Riding a roller coaster or any other activity where you were jostled around was out. Leaning my head back and looking up for any period of time was out. Just shaking my own head to music was out.
However as I read, I began to questions the diagnosis. Yes this explained the buzzed feeling. Yes this explained the light headedness. Yes this explained the cloudy thoughts. But what this did NOT explain was the severe spins I would get every so often.
Eventually I went several years without a severe issue, but regularly had the BPPV episodes. Exhaustion and stress brought them on.
In Dec 2007, a few months after starting my new job I was hit with a severe episode at work. Hub had to come get me and I was sick. I was sensitive to smells, light, temperature and definitely, most definitely movement.
Again, it took only a day for it to go away and a day of recovery. This was the first time I'd ever had one that early in the day and at work. I also wanted to know more.
The internet and information available now in 2007 versus 2002 had improved greatly. In researching BPPV and other vestibular disorders I literally stumbled upon an article that briefly mentioned MAV.
Migraine Associated Vertigo.
From there I looked into MAV. The jackpot. I hit the jackpot. THIS is what I've been suffering with since 1992. This is what those severe episodes were. AND get this...people with BPPV were predisposed to having MAV. Holy Crap. I FINALLY had a name and self diagnosis for both parts of my vertigo issues.
Sometime after 2010, I began experiencing headaches. The Dec 2007 and Early 2008 MAV episodes were the last ones I had by this time. The BPPV episodes had diminished. If I felt them coming on, I'd take a severe headache pill and sleep. That usually helped. So by 2010 my vertigo episodes had practically disappeared. However in it's place I began having headaches. Bad headaches. I don't know if it's related to the MAV or my Fibro, but I would regularly have headaches.
Now these severe headaches weren't the debilitating migraines I've heard others describe, but they were strong enough to be distracting and interrupted my normal daily functions.
So during the time frame of 2008-2012, I hadn't really suffered from the BPPV or MAV, but I sure as heck had some massive headaches that I never used to have.
Of course in Dec of 2012, the 2nd week into my new position MAV hit HARD at work. Talk about embarrassing. Again it was awful... all the migraine symptom sensitivity with the motion sickness thrown in (all in front of new co-workers).
So apparently I'm not done with the MAV. Sigh. At least my co-workers now understand that I have a Vertigo disorder and what to do in the future (never an ambulance).
This past Sunday I had a BPPV episode. Ugh. Sleep and meds lightened the sensitivity, but I knew it wasn't over.
This morning I woke up for work and didn't feel right. I was lying there in the dark and just knew something wasn't right. Turned on the light and moved slowly. Showered and just didn't feel right.
Decided not to risk going into work nor would I be able to work from home.
I think what I'm feeling is a slight hybrid of the BPPV & MAV.
I have a very severe headache. It's at the back of my skull and neck. I am sensitive to motion, but not full on motion sickness. I've got cloudy thoughts. I can't seem to think clearly.
So in bed I was all day. Well almost all day. I did get up between noon and 2 and now 6 and ...whatever. I am trying to tire myself out. I took more meds. I have my glasses on. I'm hydrated. But lord does my head hurt. Movement --no cars for me. I'm hot and cold and hot and cold. I have zero tolerance for most everything.
I feel like it's always one strike after another. I was sick for nearly 2 months with a cold and then sinus infection. Now this.
Sigh. I did learn today that MAV is also now being called Vestibular Migraine.
Research for information today is so much more fruitful than it was when I was first diagnosed. Sigh.
So I have no idea about whether or not I will be able to work at all tomorrow. This thing I'm having today is new territory.
So that is why I haven't worked out this past week. :)
MAV information
https://vestibular.org/migraine-associated-vertigo-mav
BPPV
https://vestibular.org/understanding-vestibular-disorders/types-vestibular-disorders/benign-paroxysmal-positional-vertigo
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