I’m having a pretty hard time understanding all this. I’ve had this diagnoses of MAV for 2.5 yrs and I still for some reason can’t figure it out. I have vertigo everyday in some form, some days are less and some bad. I don’t understand the migraine part of this disorder. I know it sounds stupid to most people, that you think by now it would make sense, but it doesn’t. I don’t understand how someone who doesn’t feel the migraine head can be dizzy 24/7, or how a person can be dizzy 24/7 in the first place with this. I don’t feel like I’ve had any compensation with my brain with this since I am dizzy everyday. This may be a bit long because I want to give you information.
First my the sensations I feel now are: Vertigo as my doctor explained it is the feeling of movement when there is none. I feel like im moving all the time, sitting, standing or laying down, boat floating feeling like i"m being lifted up then going down with the occasional dropping sensation, like i’ve dropped 20ft. When looking around a larger area like my kitchen it looks the way it would when your standing on a boat and looking at the horizon it looks like the room or whatever i’m looking at is moving in a wavy like motion. When scrolling through my phone lets say, in my peripheral vision it will look like the room has turned and I usually gasp. Sometime when sitting or standing it feels like the room is going to turn or I’m going to turn but don’t. All of this movement sensations are felt through my entire body,not just in my head type of dizziness.
When this started I felt like I was rocking all the time, that lasted about a year, then It went to this bobbing around feeling, in the last year to now its been this horrid boat floating feeling like i"m being lifter up then going down with the occasional dropping sensation, like i’ve dropped 20ft. These are all the symptoms/sensations I’ve had over the last 2.5 yrs. Rocking/swaying, falling feeling when I turn my head, quick spin sensations usually when I’m looking at my phone or bending forward it just hits fast then is gone, very dizzy before a hot flash (Im post menopause) floor feels like its moving up and down when I walk this is every night, headaches from my neck into my my head usually the forehead area or back of the head, anxiety, depression, floating feeling, being pulled to the right feeling (my ear problems are always on the right), feel like I’m being pushed when walking, sinking feeling when sitting or standing, what I call a raft floating feeling (like I’m slightly moving upand down like on a raft) bending forward and room feels like it will spin, backward falling feeling, head pressure, jaw popping Had this one for years, sensative to light and louds noise, crowds and patterns, mid and lower back pain ( assume this is from trying to be stable all the time when walking) neck pain and tops of both shoulders are tight, vision is off at times, leaning feeling, feeling like I’ll fall of the bed if to close to the edge.
History:, Had possibly 1 migraine in my life, my daughter and son have them. I’m hypothyroid, menopausal, anxiety disorder, had BPPV in 2009 and had rocking dizziness in 2010-2012 and it stopped on its own, but I did pay much attention to it because I thought it was the peri menopause, had MRI in 2010 results normal except for white lesion matter on frontal lobe indicative of migraine or possible past lymes, never tested for lymes. CT scan in March 2016 because heaDaches were daily, normal results. Have had what I thought where stress headaches for years with neck pain, but neuro ENT says where most likely migraine in form. Before I got MAV I was under a lot of stress and thats all I can contribute it to.
Medications: Propranolol 2.mgs twice a day and started nortriptyling a month ago 10mgs a day, and today was increased to 20mgs a day. Xanax when I need it and it is the one thing that stops the vertigo while its in my system.
Did VRT for 4 months and it helped then i started the propranolol and stupidly stopped doing the VRT at home thinking the med would stop all this.
Medications tried: Amitriptyline 10mg bad reactions, mirtazapine helped stop dizziness but bad side effects, klonopin cause worsening dizziness, ativan worsening dizziness
Triggers are very hard for me to figure out, because I’m dizzy all the time. The only triggers I"m sure of are, msg, chocolate sometimes, orange juice, banana’s, mango’s, weather changes, stress, anxiety, fatigue
I spend alot of time wondering if MAV is really what the problem is, why because I don’t understand how anyone can be dizzy or have vertigo 24/7 for this long. I don’t have headaches daily but I have vertigo daily. If I’m not having a daily headache how can it cause vertigo? I have researched high and low on this and can find nothing really that relates to MAV that has detailed explanation. Everything I read is about the migraine headache and how it can cause dizziness, but this is in episodes when the migraine is coming or during. MAV is not episodic for me. But everything says its episodic. So I"m hoping someone here can explain this and maybe give me some references to read. Thank you for taking the time to read this and to help in any way possible. I think if I can better understand all this maybe the frustration and anger I feel will go away.