Hey! I just wanted to make a kind of FAQ about my neurological disorder and how it affects me personally: Spatial Disorder and Migraine Associated Vertigo. Since its upsetting to constantly explain I figured what better way than to write about it! Spreading awareness and knowledge is always great too! This is a chronic invisible illness. It matured in full when I was 20 years old; according to doctors it is genetic.
What is Migraine Associated Vertigo?
Migraine Associated Vertigo (MAV) is dizziness that is associated with having a migraine condition (remember, migraines are not only headaches; headaches are a side effect of the migraine disorder). So, in other words when I get a migraine caused headache (a recurrent throbbing headache that typically affects one side of the head and is often accompanied by pain, nausea, problems processing thoughts or conversation and disturbed vision) I also get dizzy and I get the sensation of spinning - sometimes it is me and sometimes it is the room. If you have ever had “drunk spins” think of that. This causes me to have to lay down in a quiet dark place, otherwise I might vomit or pass out.
What is a Spatial Disorder?
A Spatial Disorder is when one’s brain has a problem with processing. This ranges from basic visual sensory deficits that result in visual spatial errors to higher level processing of visual information that result in abstract visual disability. So what does this mean for me? My brain takes in sensory information triggers (i.e. touch, movement, smell, sight, sound, taste) and reads it skewed. When there is an overload of sensory “triggers” my brain gets overstimulated, which triggers me to become very sick (nauseated, migraines, puking, panic attacks, pass out). Sometimes - if not most of the time - it also triggers my Migraine Associated Vertigo (both trigger each other and work together to make me feel horrible).
So what does this mean for you Jamie?
These two disorders have put restrictions on what I am able to do without becoming sick (nauseated, migraines, puking, panic attacks, passing out). By following these restrictions I am able to live the most “normal” life I can live - if I do not follow them I become very sick and am usually forced to take spot treatment medications, go to sleep and spend the rest of the day (sometimes week) in bed. I have spent almost six years studying my “triggers” to know what I am able to do and how to do it.
above is the overview of the disorder. if you'd like to know more of my personal experience with it and how it effects me, below is that…
What is a Trigger?
Triggers are anything that might trigger an episode of being “sick.” Triggers have a HUGE range! So this is the fun part where I get bummed out listing everything I am unable to do because most everything is a trigger. Remember, I have been at this 5-6 years; this stuff is not negotiable - some of it I have figured out ways to try and cope, but again, none of this is easy for me. These things below are what trigger me. Now, I may be able to put up with a few triggers, but once there are too many, that is it. A good analogy I have heard is to think of yourself in a pool with each trigger being another foot of water. You are fine until the water is over your head and you drown - it’s harder to come back from drowning than not getting there in the first place. Anyway…
-Movement: This has a few different features: traveling and the movement of objects around me. I am unable to drive past 25 minutes myself without feeling sick, and my limit as a passenger is around 40 minutes. I also have a hard time with moving items in front of my face or around me: a busy restaurant, stop and go traffic, walking behind people or even walking down an isle in a store while looking sideways at the products as I pass by are all prime examples. I also can’t move my head around quickly, usually to view something I move using my entire body.
-Volume: THIS IS MY BIGGEST PROBLEM!!! I cannot be in loud places because it instantly triggers everything! No restaurants on a Friday night. No movie theaters. No concerts. No blasting car music! No loud voices. No loud multiple people conversations.
-Hormonal changes: I am a girl, I have monthly hormonal changes. With this said, that change alters chemicals in my body which serves as a trigger.
-Barometric Pressure Changes: The weather changing. For example, if today is a rainy day or the weather changes rapidly..it affects me.
-Food: Although for the better, I am unable to eat any food with MSG, preservatives or Nitrates. Restaurant food, food from a box etc… typically is a no go.
-Alcohol: I can only drink “pure” clear alcohol. Vodka.
-Environment: Things like overly lit rooms or under lit rooms give me a hard time; sometimes even ceiling fans trigger me, big parties, family parties, indoor bars, concerts, movie theaters, busy restaurants, elevators.
So what can you do Jamie…
Quiet and calm places are the best places for me. Usually if I go out to eat I go earlier or later after the rush. Also, sometimes I am able to do or eat the above, but there is a tradeoff: usually if I eat bad food or drink, the next day or a few hours later I am sick. If I travel far I have to then be able to go to sleep for a few hours to reset my brain. So there is a way to do some stuff but it always affects everything and has a trade off; am I able to afford to stay in bed the entire next day? Do I want to be puking the next day? It depends. Is the tradeoff worth all of that? Sometimes even when it is, I get tired. It’s hard on me. I also carry medications to try and help me through everything.
Outdoor activities, outdoor bars and homebody activities, I really like to set up photoshoots, paint, and do creative things. I even have been able to be at concerts when they were OUTSIDE since I can be farther away and there are no vibrations like there are in concert halls. I like malls when they aren’t busy, I like arcades when they aren’t too loud, I love to cook, I like to go to the gym at night, I go to cons that I know the ins and outs of for what areas are not as crowded or loud (you will usually see me in big open areas), I like to play retro video games (sometimes the graphics on newer games trigger my vertigo, this is one of those trade off things haha). I can drive with in a 15-25 minute radius. Usually I will take my own car to events as well so that I can be there for a little while and when I start feeling bad, I just go home. I do not want to ruin anyone’s fun. Also, if I have to be somewhere a few hours away or even a flight away (which I have only tested a 1 hour flight, and it was the worst experience I have had in a long time, I am not keen on this, its border-line impossible for me, I almost got taken off the plane, and took a few days to recover from) usually I will do my traveling a day early, get a hotel, spend the entire day/night (sometimes even the full week before) preparing myself for the next day, try to get a good sleep, and then go to the event the next day. YES JUST IF ITS AN HOUR AWAY I HAVE TO DO THIS 99% OF THE TIME. I try my best to be as “normal” as I can be and this is how I am able to make it appear that way.
What medications do you take, have taken, have you tried this?
The answer is yes, so stop trying to diagnose or medicate me. I have tried everything on a list of possibilities aside from a medication that could result in Parkinson’s Disease. Will power, optimism, stubbornness and dedication is not an issue. I have been through 9+ doctors, neurologists, ENTs, 8 of which told me “nothing is wrong with you.” I am now working with 1 of 8 in the world renowned dizziness specialist neurologists. I have had MRI’s, Cat Scans, brain tests, been through physical therapy to retrain my brain (no, it’s not an inner ear problem, and acupuncture won’t do anything), I was on bed rest for over a year, I have been on 7+ medications all of which have had miserable side effects such as night terrors, insane fatigue, weight loss, panic attacks, uncontrollable shaking, slowed brain processing. The restrictions I listed previously are the reasons I am where I am. If I did not have these restrictions or live by them, I might still be on bed rest or in and out of the hospital like I was when all of this first happened. What I can do now is an accomplishment. There was a time where I slept every other hour, was on many prescription drugs to try and sedate the illness, had to be taken care of and fed, bathed by someone, etc... Just know that I have probably tried it, and have been trying, if I am not receptive to your diagnosis, it’s probably because you’re the 1000th person to try and diagnose me. It’s not necessary.
This is a chronic illness, its not going away; chronic means for life and has no miracle cure. The best thing anyone can do for me is try to understand what I am going through and be knowledgable (of the above).
Thank you for taking the time to read this. Hopefully this helps everyone understand what I am working with and what people with spatial disorders and migraine associated vertigo go through.