I’m a 71-yo female who has been recently diagnosed with vestibular migraines. So far, none of the medications have given me any relief from my symptoms. I deal with daily dizziness, sometimes accompanied with nausea, tinnitus, poor balance, and loss of hearing.
Early this year, I was diagnosed with thyroid eye disease and Hashimoto’s thyroiditis. I began Tepezza infusions and completed 5 of the course of 8. After the 5th infusion, the tinnitus began, my hearing was worse, and the dizziness was profound. The doctor discontinued the treatment.
Upon referral to an ENT, he gave me the diagnosis of vestibular migraines.
I am looking for support and especially information on this syndrome.
This is my first time on this group. I’ve had Vestibular Migraine for 3 years now. I have all the symptoms you mention plus really bad headaches. I haven’t found a medication to help either. What meds have you tried so far? I‘ll list what I’ve tried as far as meds and other things
Steroids, Amitriptyline, propranolol, emgality, Nurtec, Topamax, NUCCA chiropractic, vestibular therapy, magnesium, coq10, butterbur, exercise, quit caffeine completely, quit all artificial sweeteners, try to avoid MSG when possible, keto diet, gluten free, dairy free. Honestly the only thing that’s helped is the vestibular therapy, chiropractic care and exercise when I feel good enough. Im so sorry you are struggling with this crazy nightmare. I will say it gets more manageable as time goes on. You do have to learn how to adjust the life you were used to and accept it even though it’s so hard. Some people go into remission and I truly hope that for you! It’s good you are doing your research, I’ve found the best way is to talk to people who have experienced the same thing and to make your family and people close to you aware of this disorder.
Everyone is different and sadly, no one treatment cures our ailments but look for a good neurologist who understands and treats vestibular migraines. After 25 years, i found great relief with nortriptyline along with vitamins B and D and magnesium. Good luck to you.
Thanks, Rachel, I appreciate your experience and advice. So far, I have tried nortriptyline and Nurtec. Neither have given me any relief. I had been on blood pressure meds that are used for migraines prior to my diagnosis and they didn’t make a difference. I take magnesium every day and have for years for muscle spasms. I have tried gluten free, dairy free, and sugar free. None of that made a difference. I still drink coffee but only one or two cups a day. I try to walk when I am up to it but I’m having an issue with my hip which makes that hard.
Have you ever tried Aimovig shots? I hear those are very effective. That may be the next thing my ENT will recommend.
I have an appointment with a neurologist next week. I’m curious what they will recommend.
Dang sorry nothing has worked for you, I have not tried Amovig but I have tried emgality as an injection and personally I had horrible side effects. I had the worst lower back pain of my life, super bad anxiety, insomnia and it made me feel high. These side effects only lasted the first few weeks but everyone is different! I’ve also tried other CGRP’s, Nurtec and ubrevley and didn’t do well on those either. My neurologist claimed that these meds have ZERO side effects but I’m super sensitive to medications. I say give the Amovig a try if you have good insurance, it may be what works for you!