First acute balance issues: Sept 2019
Number & duration of acute phase(s): Too many to count some last 1 day; some 3 days
Any suspicious physical event/trauma leading up to dizziness: Serious ear infection 2015
Start of chronic phase: ??
Age at chronic onset: 37
Started medication: May 2020
Stopped medication: currently still on
Number & type of consultants seen to date: 1 Neurologist & 1 ENT
Diagnoses received (one I’m “running with” first): Migraine with brainstem aura and ocular migraines
Medications used successfully for MAV: Meclizine +low dose of Diazepam *currently on 50mg Topamax
Failed medications for MAV: Advil Migraine
Non-pharmalogical treatment tried which helped: none
Non-pharmalogical treatment tried which didn’t seem to help : none
Dietary triggers identified: working on this
Any hearing loss in either ear: Left ear
Persistent or intermittent tinnitus and character: left ear is a torture chamber
Other chronic conditions I’m suffering from: I don’t suffer from the chronic; I quite enjoy it
Medication I’m taking for other conditions: Omeprazole
Any personal history of migraines: yes, but not realized until recently
Any family history of migraines: yes, maternal side
Any history of ear problems: yes
How did friends, family, and doctors react to your symptoms?: Everyone is very supportive and helpful. My husband is desperate to help. I’m very lucky.
(Your current state)
What’s Gone: (what symptoms you had but no longer get)
What’s Ongoing: (what symptoms you still get) vertigo, perpetual motion, light aura, ear problems
My Worse Day Now: (description of the worst day you get now)
Usually begins with excessive yawning, pressure/fullness/ringing ears, color change (light aura) blue/pink are my 2 main colors, then the dizziness set in, the boat starts rocking, at this point I have to “play dead” this entails lying perfectly still until the worst of the feeling passes. It comes in waves so I can come around for a minute or two, but then I’ll start floating away again and I’ll go back under. This can last any where from 1-3 days. I have a cane to get up to go to the bathroom when I can manage to actually be upright. My husband usually sets up an old twin mattress by the bathroom with everything I need within arms reach.
(a bulleted timeline of your history from very first symptoms. Don’t make it too long, a “page” is enough. This is more freeform)
- It all began when …I had a bowl of miso soup and sat back down on the couch. Started get a weird feeling like I was going to pass out…it kept coming in waves like I had eaten magic mushrooms (wet, floaty, slow motion, color aura), but I hadn’t. I knew I was in trouble.
- The first thing I did …I called my husband, he was at work. He told me to lay down so I did. He called 911 and the paramedics came. They did not understand why I was playing dead, decided it was a “panic attack” and left. I went to the VA ER the next morning and they suspected Menieres (sp?) and put my head in the car alarm machine…worst day ever.
Start of Journal
Today I …had a pretty good day. The world went orange (this is a new color for me) before lunch but I knew I was feeling funny when I woke up, the top of my neck at the base of my skull hurt…that’s usually a bad sign for me. After lunch, I’m feeling much better. Still the underlying floating feeling, but it’s what it is. I’ve learned to live with alot of the symptom, hopefully one day, none of us will have to.