I was recently diagnosed with VM (or what my Dr is calling “migraine variant”) this past week. This has been quite the journey for me thus far. As a child I suffered from childhood epilepsy, but have been seizure free for 26 years and off medication for 20. My seizures were triggered by strobe lights, mini blinds, and various light sensitivities as well as hormonal fluctuations (oh the joys of being a woman) so I have always been sensitive to certain patterns, strobes etc, and avoid when possible.
Around this time last year I was noticing more dizzy spells around what would be my menstruation. I had the Mirena IUD to assist with regulating my hormones since I am sensitive to estrogen and honestly that time of the month just gave me dizzy spells and made me want to sleep all day. I assumed maybe my hormones were messing with me and had it taken out. tried to nuva ring and hated it so put the Mirena back in. During all this time I start noticing that at my work meetings at the office I am having these strange dizzy spells that werent always related to menstration. In fact, one time during a 1:1 meeting with my boss I got super dizzy with intense anxiety and asked to take a bathroom break. I thought maybe it was hormones, maybe it was my epilepsy coming back. I thought maybe I’m going through menopause? I’m 35 so all clear there. I bought some light filtering glasses to help with meetings at work. Luckily I work at home and out in the field mostly so I can really limit my time in the fluorescent lighting. But literally every time I would get dizzy, a panic attack, and tingling sensation in the pack of my head. Unfortunately all the glasses have done is buy me some time before the attack sets in.
I am a behavior analyst by profession so I began violently recording my behavior patterns before I even got to the neurologist. I’ve got the migraine tracking app and have started the diet…which has been rough. Of course the blood work and MRI all came back normal. Thus the diagnosis. Dr. prescribed me Cambia as an abortive and Topamax to take daily. The most difficult part of this experience has been the emotional toll it has taken on me. The intense anxiety I experience as I go to the grocery store wearing the light filtering glasses that don’t work to read the label of the spaghetti sauce to make sure it doesn’t have any darn onions in it is intense.
Today this happened. I went to the store to get food to really dive into the elimination diet and I got an attack while waiting in line. So I had to pretend that I left my wallet in the car so I could get natural light, cry, and give myself a pep talk before going back in (wearing my 3rd pair of light filtering glasses that dont work). I literally can’t go into any store with fluorescent lighting right now and it’s leaving me feeling hopeless (see you later Target, guess we had to break up sooner or later). This diagnosis is also coming at a time when my fiance and I were discussing possibly starting a family (which is funny because at 35 I’m apparently geriatric?!) Also, I play drums so you know migraines and vestibular issues are wonderful with drums.
So, that’s me in a long synopsis. I am really hoping to learn from others, and find as much info/support I can. Thanks in advance if you actually read this, it means a lot to sad (and silly) woman wearing grinch pjs like me.