Helen, I just want to thank you for providing so much detail about your journey. My vestibular migraines started in 2008. I had scans done, but everything was normal and so doctors just kept telling me it was “stress and anxiety.” I had anxiety because I was so dizzy and it scared me. I’m not anxious on non-dizzy days.
My symptoms increased in the spring of 2019 when I started menopause. I was not officially diagnosed with vestibular migraine until January 2020 following an attack that left me in bed for the better part of four weeks. This was the first lengthy migraine cycle I had that would establish a pattern of sorts. It starts with classic migraines (migraine headache with aura). I start with those - and have up to 15 classic migraines in a 4-6 week period. During this time, the vestibular migraine attacks start so that I have both types of migraine occuring simultaneously.
My first cycle, as I said, started in October 2019 and ended early January 2020. I began another cycle in April 2020 and that lasted 4 weeks. Then I began another cycle in October 2020.
On December 15th 2020, I was sat and began having waves of vertigo for about an hour and a half when finally the wave came and never left. I could not walk, my vision had me believing my eyeballs were rolling around in my head, and I had to call my teenage son to come and help me to my room. I became nauseous and there was nothing to stop the vertigo. My husband came home from work and I vomited off and on from about 5pm to 1am, despite an antiemetic. It was about 5 days before I could walk unassisted; a week before I could leave my bedroom; and a week and a half before I could get up and do things around the house for a maximum of 2 hours before I’d have to retreat to my bedroom.
In the early days of the attack, I had to keep a facemask over my eyes due to photophobia; and, it was just awaful lying in a dark room, unable to do anything, having to plan trips to the bathroom around my husband’s work schedule or crawl on all fours. I had some good days and though the cycle and attack were winding down, last week when I ovulated the cyst ruptured. This started things all over again…
While this new bout of vertigo/dizziness is not near as bad as last month, let’s just say I’m spending more time in my bedroom than I would like.
The guilt I feel because my children are without me so much right now is killing me. I have a lot of family and friends who don’t understand and say hurtful things like, “You just need to get outta that bed and go do something,” or, “You’re doing this to yourself!”
Sometimes the symptoms change from what I am used to and that scares me. So I am thankful to read your story because some of those scarier symptoms you describe as having yourself and that really helped me.
I am very sensitive to medications - there is a lot I cannot take due to conflict with other medications/medical conditions, allergy, or intolerance, and all the medications I have seen people taking for this are on that long list of “I can’t take that.” So, I just do what I can: wear blue blocker glasses if I have to do computer work; severely decrease time on the computer and smart phone; take care when looking up, bending down or over; listen to my body. I cannot drive hardly anymore and riding in a car as a passenger has become difficult. I have good days and bad days. I struggle with acceptance as this sometimes feels like a prison sentence.
I am wondering when this current cycle is going to end, and am beginning to wonder if last week was the start of a completely different cycle so close to the end of the first? Anyway, thank you for sharing, helping me with my anxiety about things (because I can get neurotic about it all sometimes swearing I have a tumor or something nefarious).