I am a newbie here, but not to the devistating, life altering effects of my condition.
I have just been diagnosed with MAV (Migrane Associated Vertigo) which is what A LOT of us here are diagnosed with as it is the diagnosis for our symptoms when the doctors can't "find" anything "wrong".
Please respond to this post, all of our lifes actually depend on it.
What I would like to get is a baseline of all of our symptoms and then a number of how bad the symptom is.
I have listed myself as an example, please list at least what we all have in common and add what you may also have, a timeline of your diagonis or treatment can help to.
The bottom line is this, we are not going to get better unless we stay together and fully communicate any/and all possibilities and then explorer these possibilities in hopes to find "the Cure".
I will start with myself:
DIAGNOSIS SO FAR: MAV (Migraine Associated Vertigo)
HOW LONG WITH SYMPTOMS: 15 years
SYMPTOMS: (Note: list the symptom and then rate it on a scale of 1-10, then explain a little about it) also note if its 24/7 or not, so if it goes away sometimes completely it is not 24/7.
Dizzyness/Unsteadiness: (4-7) 24/7 Depends on day gets worse with stress on mind or body. I feel more Unsteady know then dizzy, although at first (15 years ago) I felt more dizzy. Also is the lowest when I am lying in bed after 2 hours in the darkness before I fall asleep
Ear Preasure: (9) 24/7 Always! Gets worse when I stress my sinuses, blow my nose, and when humidity (barometric pressure) is high, I also always have a runny nose? Ear drums ache, sometimes sharp pains.
Ears Popping (9) 24/7 yup, they crackle, pop, sometimes I feel "fluid"
Hearing Loss: (2-4) this is weird, mostly I don't hear as good because of the tinnitus gets louder or the pressure builds and my hearing goes in and out with the pressure changes, all this happens when I stress my mind or body, or blow nose/cough, etc. I have no actual loss per the doctors.
Tinnitus: (2-6) 24/7 unnoticible unless in a silent room, but can be so lound I can't here as well as I should.
Head Pressure/Sinus Pressure: (9) 24/7 gets a little better with less stimulus but feels like i have a sinus infection, my head is full, cracking sounds, etc.
Brain Fog: (7-10) 24/7 This is horrible to say the least, I can't remember things, am completely disorganized even if I am organized, have trouble with simple words, simple math, forget almost anything that is said to me, have a better time remebring written items, it all gets worse when I am tired stress my body, or am in a noisy or visually buzy envronment, like a mall, etc. I AM CONSTANTLY ANGRY AT MYSELF WHEN I LET MYSELF DOWN AS I AM FAIRLY INTELLIGENT BUT WORK WAY BELOW MY ACTUAL ABILITY BECAUSE I CONSTANTLY AM IN A COMPLETE FOG.
Dreamlike/spacy feeling: (7-10) 24/7: I feel like I am in a dream, nothing is bright, nothing looks real, all my senses fell dull, sometimes I have to have someone say something 3 times before I understand what they are saying, I feel like the world is a little bouncy, and i feel like I am not moving wherever go its the world that is scrolling underneath me and I am in the same place. gets morse with stimulus.
Neck pain: (4-8) 24/7, mostly at the base of my skull and where the neck begins on my sholders, sharp pains sometimes, if I look up and trun my head clockwise and counter clock wise I fell and here a scraping sound/cracking, i believe in my neck or at the base of my skull, I am not sure.
Anxiety: (10) 24/7 would be an 11 if possible is better only in a dark room and is caused by my world always moving, head feeling like it will explode, you know, the fun stuff.
Shaking: (8) 24/7 hands, head, eyes, just about everything but my hands head and eyes are the worst, I can send any of them into a spasm if i relax them and "release" myself form them.
Weakness/Joints/muscle pain, Hands/Feet: (7-10) 24/7 Getting much worse as of lately, joints hurt, muscles jittery, throbbing, fell like my hands an feet are asleep.
Eye Pressure: (9) 24/7, constant behind eyes, dull pulsing pain, get sharp at times.
Focusing problems (10) 24/7, my eyes jump arouns and its hard to focus on something near and then something far, eyes alway want to focus on the nearest object.
AURA (7-10) 24/7 I have VS (visual snow) Cell like worms throughout both eyes entire fields, things in peripheral appear to move in the opposite direction my eyes are moving so i get to the object sooner then I should. I get green stuff wneh I close my eys and on most thing when I open them, petterns move, words move, edges of objects move, and well, thats it for now. Gets worse when head pressure feeling increses.
Jittery (10) 24/7 never gets better, eyes are jittey, I can actually send them in an epeleptic like spasm is i relax them enough.
In early 1993 I was done taking accutane (i was 19 years old) just had my wisdom teeth pullled and noticed some visual issues, not as bad as it got, but I got dizzy and foggy the more buzy the environment got, all of it was annoying but livable, and then:
In Mid 1993 i got REALLY drunk (and I wasn't much of a drinker) blackedout, bumped my head, woke up in a hospital and all the problems I had before where a thousand times worse.
For 2 years I lied in my bed saw 20 or so doctors, nothing helped everything was even worse then it is now, I simply couldn't see straight and was beyond brain fog, I felt like I was dead and dreaming completely.
During these two years I did vestibular exercises 24/7 even thought I didn't know thats what I was doing, I would force my eyes to stare at objects and focus while moving my head, I would ocus my eyes to see the four corners of a room whilce lying on the the floor and looking up ath the ceiling, i tried to keep my eyes from jumping, I forced my eyes to focus on objects looking from far to near. I also seff prescribed myself klonopin as it was the only thing that helpes but the doctot was convinced it would do nothing and that it was all in my head. All tests came back ok, MRI, nothing wrong with any organ, visual tests and inner ear tests came back inconclusive, they said there is nothing wrong with the organs but I did exibit visual tracking problems, and odd visual responses to my visual field tests.
Also the nystgmus test for the inner ear said there was no inner ear problem but that I had some sort of problem with my eyes when motion was applied to my vision, or to my body.
13 years went by, I gave up, I have been living in a nightmare trying to be as "Normal" as possible, I started to releran how to drive on a moped at first, and then a motorcycle (an automatic, there was no way I could drive a standard at the time or since) and then a car.
Missed college because I can't read for any long period without extreme discomfort, and it meeseup everything for at least a day.
So I have been working in retail for the past 15 years, because physical work (which I love) is too much, I am always weak and tired, and I have been in management roles, but as time goes by, I normally have to step down, or am asked to because my brain fog gets me into trouble (not bad trouble but enough to cause question)
I fell like my employers think I am lazy or don't care at times but I do, they just don't live in my world
I had my super cool daughter in 2001, I CANNOT give her the daddy she needs because I am actually handicapped because of this. I want to be there for her but I am always tired, or out of it. I am a good dad, but, needless to say, I wouldn't have changesd anything but when my fiance, her mom, said she was pregnant I told her I didn't want to have her because I felt I could not be a real DAD. I don't advise having children with this disorder unless your significant other is the bread winner and can pay the bills, or you end up at least 80% or better cured as you will end up being a so-so parent, and its not your fault.
PLEASE LIST YOUR SYMPTOMS AND STORIES SO WE CAN ALL FIND WHAT HAS WORKED, AND WHAT HASN'T. DON'T LEAVE OUT ANY DETAILS, PLEASE DON'T REPLY TO ANYONE IN THIS THREAD AS IT IS INTENDED TO GIVE EVERYONE A CHANCE TO TELL THERE STORY SO WE CAN ALL FIGURE OUT THE SIMILARATIES. REMEMBER TO LIST ANY DOCTORS OR PROCEDURES AND OR MEDICINES THAT HELPED AND THOSE THAT DIDN'T..
We are all in this together, I do believe if we all woke up with this one day, or something caused it that it can be cured but as you all know, doctors are not really taking this to seriously and no one other then us, understands.
I feel for all of you and thank you for trying to reach out to help us all...
krahon aka tyler