Hey Everyone! I have been lurking this site for months but figured it was my time to join and contribute as I have seen so much hope.
I had mild migrains in college that a Tylenol would cure. I had 2 babies back to back breastfeeding in between. After having my 2nd baby 3 months post baby I woke up with the spins! Just had gotten the mirena iud. 2018 I felt off but wasn’t “dizzy” I went a entire year into 2019 and the month I stopped BF I had recurrent episodes of vertigo(HORMONES) I felt like every time I looked around with my neck I got so dizzy! April may June July each time while waking up in bed- vertigo bad vertigo once a month atleast took a meclizine and went back to bed. Went to the ENT who ruled out inner ear. Was referred to a neuro doctor who did a MRI and said migraines. I wasn’t experiencing every day dizziness nor did I believe my “migraine diagnosis” I was convinced it was my ears!!! But decided to kick red wine and Chinese food to the curb and my waking with rotational vertigo went from every month too every 2 months! Still wasn’t convinced saw 2 more ENTS-central findings. Did some VRT thought it helped just being optimistic but hard NO. Just makes your better days WORSE.
I had a vertigo episode in October 2020 and went all the way till January 17th of 2021 without a vertigo episode that left me in bed. On January 16th(the day before my last episode) I got my first covid vaccine and decided to reward myself with Chinese food for the first time in 6 mos(lol bc it was inner ear duh!) wham bam the spins my head was off my pillow and when I sat up I was on a tilt a whirl.Walked back into the ENTs office told him myself it was vestibular migraine(lol) he agreed retested me again for all of the inner ear tests but again -NEGATIVE but he wasn’t sure how to treat very well. Diltizam 120mg was started. I titrated up to 180mg. Constipation that’s about it. February 2021 I got on the heal your headache diet following dizzy cooks recipes. Slowly tapered off of coffee which was stoped 3/1/2021officially.
I have not woken up with the spinning vertigo for almost 3 months! But I still feel like I’m on a offshore fishing boat almost all of the time! I went to a super great neurologist on 3/20/21 who wanted my to do a steroid taper, B2, mag and return in 3 weeks. I don’t feel like the diltizam has helped me at all and I lol that I was even prescribed it. My neuro was also confused as to why that other than that it is a CCB. I’m beyond frustrated with feeling off balance as it’s been almost a year but since January it is NON STOP I hate laying flat too. Stopped taking the diltizam in March (was on it about 3 months) Started taking topamax/topirimate 2 weeks ago 25mg for 5 days then 50mg (whoa sleepy whoa swimmy headed this took about a week to go away!) but I’ve had shockingly a few good days and some decreased rocking so maybe I’m headed in the right direction. Side effects I got a little itchy and tingly as well.
Will update everyone as I continue! I know it is so helpful as this site has meant so much to me and so many others!