hi! just found this forum. over the past couple of years I’ve had episodes that started really mild to the point where I didn’t register them as concerning - I just felt “off,” my vision felt “weird,” or like I was slightly tipsy without having had anything to drink. I would often feel like I was going to get a migraine (had them as a kid), even though I didn’t have the glittering aura I used to get, and I never got a serious headache. last august, though, things came to a head when I spent 3 days feeling extreme brain fog, dissociation, & dizziness. the dissociation especially scared me. nothing around me felt real & I was worried the world would never come back. I found vestibular migraine through searching “migraine” and “dissociation” online & made an appointment with a neurologist saying I thought I was having symptoms of VM.
neurologist said that my symptoms were “nonspecific” and vestibular migraine is basically what dr’s say when they don’t know what’s going on, but we would try migraine meds because why not, basically. (I didn’t like her very much.) I went on aimovig for a few months and it certainly didn’t help - it might have even made it worse. some months have been better than others but I’ve had symptoms almost every day for months now. for 1/2 the days of last month, I spent significant portions of the day in bed, super dizzy & confused from brain fog. if I had a job with closer supervision and a less understanding boss I would have been fired by now. and even when I don’t have really bad migraines, I feel like my brain is so much slower than it used to be. I’m scared that I’m basically getting significantly dumber as a result of brain fog from VM, esp. frightening because I’m going to law school in the fall. & also I’m just in mourning of how easy it used to be to think, I guess.
current situation is that the same neuro sent me for an MRI (came back normal) and ENT appointment (still waiting on that) and prescribed me Propranolol but said I should wait a little bit before trying it to see if upping my dose of gabapentin (originally on it for psych stuff but seemed to help a little with symptoms) would help. I’ve also noticed that I’ve started staggering around in the mornings before I put my glasses on, and so I tried an at-home Romberg’s test (standing up with feet together with my eyes closed) and couldn’t stay upright.
mostly I’m here because I feel really stressed and sad about how much my life has changed, but I also wanted to ask if anyone has is experience with screens being an extreme trigger? when my symptoms are bad, I can’t even look at one without feeling like the world is spinning and I’m going to throw up. I’m at the point where I’ve asked the accessibility office at my work (I work at a large university with good resources for disability) for a screen reader because it interferes so much with my ability to do my job. I’ve googled around about screen readers and migraines before but haven’t found anything online about screen readers being used for migraine symptoms.
Sorry to read how things are currently working out for you. You will find most on here can tell similar stories and will sympathise. The whole world can suddenly a;pear to have changed around us. I know that feeling only too well. You seem to be doing the right thing. Trying to get a specialist who can help sort it. Getting VM under control takes some time usually so much patience needed I’m afraid and often as nit that involves some alteration to our planned way forwards ie various currently unattainable things needing to be put on hold but hang in there. With treatment things will improve and no you have not got dumber. Just blame the condition. Signals misfiring are causing much confusion hence the brain fog etc. ‘underneath’ everything is just as it should be.
You mention screens as a trigger. Please carry out a search of the site and find the many references. They most certainly are. Personally over the years I have had to go months at a time not using one, neither computer nor television. Medication. Really helps most people there. Btw I am on Propranolol. It’s one of the most commonly recommended oral preventatives.
Yes, please use search, one good Topic is: MAV'ers triggered by computer use -- your advice needed!
@Onandon03 has helpfully linked more useful Topics there in the last Post.
You might consider trying Amitriptyline as I recommended on this Topic. That was super effective for me!
Thank you for both the kind words & the links to screen-related Topics!! I haven’t read through them in full yet because, you know, screens, but it looks like they will be incredibly helpful. I feel very glad this site exists.
Welcome big and sorry that you have to be here, but there’s a good support network here that you’ve found. In 2018 this whole thing hit for me and I couldnt look at a screen or tv long for months , but, it all came back after meds and VRT (when your brain and vestibular system calms down, search the topics about vrt here to get an understanding of that ). To give you an honest assessment after that I was good and fairly normal for about 4 years, but about a month ago I got set off again after some dental issues. So I am limited on screens again, however it came back once, so I am sure it will eventually come back again. Take it a day at a time and pat yourself on the back after getting through each day, because right now it’s tough and you deserve self appreciation for persevering
Sorry to welcome another person here with VM symptoms, but you’re in the right place. We’ve all been down the road your on. I was convinced I was getting Alzheimer’s. I went to my primary care, she sent me to my cardiologist, she sent me back to the primary care who sent me to a neurologist, so sent me to an ENT, who “thought” it might be Meniere’s. I changed neurologists who then sent me to a neurologist that treated only migraine patients. She looked at all my tests and told me that I did not have Meniere’s, but that I mad Vestibular Migraines.
It unfortunately is a long road to get to a diagnosis and very often a longer road to get the symptoms under control. Once you have the under control it’s a struggle to keep them there, but it’s a struggle worth fighting. Every day you are free of the dizziness, brain fog and vertigo is like a day in paradise.
You are indeed lucky to have an understanding employer. I was too. Any other employer would have said, “Sorry this is happening to you, but we need someone that can do the job we hired you for. Good luck, but we have to let you go.”
Keep your chin up and keep us posted. There is a lot of good advise here and just know that we have walked in your shoes, so we aren’t going to be critical of what you have to say.