Hello! Longtime lurker. Thank you so much to this community for EXISTING. My searches and deep dives have made me feel far less alone.
My brief history…
At age 22, I got a quick bout of BPPV. Once I was diagnosed, learned about the Epley, bippity boppity boo, all better. My crystals would escape every year or two but I easily controlled it with home Epleys. Episodes became more frequent as I aged (now 38), coming every 3-6 months. All easily controlled without lingering impact.
UNTIL February 2020. I turned over in bed one night, and felt the classic BPPV room spinning, and associated nausea and sweating. But I couldn’t seem to get this episode under control. I did all sorts of maneuvers. So I went to an ENT. And then another. Finally found one that did a maneuver that seemed to work. But I never felt “right.” I had lingering dizzy sensations that I’d never felt before. Sort of like…When I moved my head, it took a while for my brain and eyes to catch up. I felt exhausted. I couldn’t concentrate. I couldn’t be present in my life. I’d be standing there and get an internal “quick spin.” I often felt headrushing sensations (like when you stand up too quick), only I was lying down or completely still. It’s absolutely still positional (I am not triggered by my environment), but it’s not BPPV, either. My ENT chalked it up to “residual dizziness” but I knew that wasn’t the whole story. These sensations lasted for 6 weeks. Two weeks after they went away, another episode of BPPV struck. And then the lingering dizziness NEVER CEASED. I had episodes of BPPV every 8 weeks, but the dizziness between episodes was the worst part. I saw so many doctors (neuro, ENTs, cardios, PT, etc, etc). Got many diagnoses. I first heard of VM in July, and went on a strict diet. The zero caffeine helped instantly, but only helped a little.
What’s happening now
Finally I found Drs. Carey and Schubert at Johns Hopkins (a far drive from my home, but worth it). They confirmed a probable “complicated and atypical vestibular migraine” with possible subclinical BPPV as well. I am begin managed by Dr. Gold at Johns Hopkins. I am on 12.5mg of propranolol (this was prescribed to me for heart palpitations by my cardiologist) and 30mg of nortriptyline. I just increased the nort from 20 to 30 (about two weeks ago) and I AM VERY EXHAUSTED. I feel sort of like a zombie. I’m not sure if that’s normal, but I’m hoping the side effect will fade. Most importantly, I haven’t really seen an improvement in my symptoms. I am doing vestibular therapy and cognitive behaviorial therapy.
I am still experiencing all of the everyday dizziness as described above. Also, when I lie flat (or side lie/Dix Hallpike), I feel a spinning inside my head for a few moments before it settles down. I have good (nearly symptom free days) and awful days.
Known triggers: my period and caffeine. I’m still on a strict diet, and haven’t felt stable enough to introduce anything yet.
I am able to function. The “invisibility” of this condition is the hardest part. Sure, I can talk to people, but long conversations make me dizzy, and I have a hard time focusing on what they’re saying. Sure, I can play with my kids, but it requires so much energy, I often have to nap afterwards. Sure I can cook dinner, but I feel like sh * t, so I’m going to be grumpy about it. I power through each day, but VM takes a massive toll on my quality of life.
I had gone on propranolol in 2019 for a heart arrhythmia, and it’s only later did I realize that I didn’t have an episode of BPPV that entire year. So maybe I’ve always had migraine, which triggered episodes of BPPV?
UGH THIS IS SO HARD. I often feel disheartened or deflated. I am trying to summon the resilience to endure this process. WHAT IS WRONG WITH MY BRAIN?! I have two young kids that need me to not only be functional, but energetic and fun and patient and happy.
Thanks in advance for any input, advice, words of encouragement, virtual high fives. This week (/year) has been a hard one. - Brittany