Want to share my experience

Glad to find this community since I am not a Facebook user. My vestibular symptoms began about 6 years ago. I felt very strange and described myself as dizzy. I felt like I had to be next to a wall to walk safely and would lean on the tether all pole to do my recess duty. My eyes didn’t seem to be able to track well. I felt unsafe to drive on highways but could do okay around town.Lights—especially fluorescent bothered me as did noise. My primary care sent me to the ER,—waste of time and money, but was at least reassured that whatever was wrong didn’t seem to be life threatening. So then was sent to PT— the therapy made me feel so sick, but I pushed myself over and over and felt worse and worse. Because I have blood vessel malformation that bled many years ago, I contacted the neurosurgeon who was monitoring the malformation. After an MRI showed no changes, I was lost until a coworker told me of the neurotologist that she saw for a different problem. I waited weeks for an appointment and once there was thoroughly screened. Yay! My hearing was excellent for my age (early fifties). While I was slightly weak on one side, I wasn’t significantly impaired. The doctor suggested vestibular migraine. I was floored because I had little to no head pain. I’ve since learned that women with a history of hormonal migraines sometimes shift into vestibular symptoms after menopause— lucky me! My current neurologist has been great. I take Verapamil daily, it was the initial Med tried and gave me some clear headed days for the first time in months. As my symptoms continued to flare periodically we tried other preventive meds without success. Then I began Botox treatment. It took about three times (11 weeks apart) before I noticed real improvement. I also began getting pain migraines as well. So, we added Aimovig which I could really tell was helping because I would get worse a week or so prior to my next shot. Aimovig really began to affect my gut though, plus I was finding it hard to make myself do the injection. Now I’m taking Qulipta. Since I started the Qulipta 4 months ago, I’ve only had one vestibular flare that lasted a couple of days and no headaches! I would love to hear what works for others during a flare up, but at least feel I’m on a good path and hope my story is helpful for others.


Welcome Suze. Reading your post clicked for me, because I’m also in my 50s and this started for me in 2019 exactly a month after my periods stopped and I hit menopause in 2020. I’m happy some meds worked for you, as unfortunately I have struggled, tried so many different ones, including the injection Aimovig and nothing. Yes, at first it was shocking for me too learning that vestibular migraine does not have to have the headache with it. I have been to several doctors, primary care and ENTs and three neurologists, including a headache specialist who have not helped me and pushed me out because they can’t figure me out. Are you a teacher? I have terrible difficulty with fluorescent lights more and more now and sounds and stress cause me to get sick very easily. I had suffered daily headaches (due to the stress of the teaching job) for the last 30 years but not know that they were indeed migraines. So now I am told that they are “intractable” or “refractory” and that is exactly what I deal with daily. My quality of life is not good. I can barely manage a “part time” teaching situation. I am on 40mg Nortriptyline, Nurtec and an herbal preventative medicine (Migrelief) which I recently added, however nothing seems to help and it is as though I’m not on any medicine. I need breaks very frequently which is not possible when you are assigned to teach three difficult classes without a prep period. I also take Omega 3, Magnesium, Vitamin D and recently ashwagandha (to help with the stress aspect). Botox has been mentioned to me, however neurologist #3 did not order. Another thing, my headaches are occipital and on my last appointment I was told to purchase Voltaren gel and apply to the back of my head and create an effect just like Botox!!! I did it once, my hair was all messed up in the gel and that was the end of it.
The only way to survive for me would be to quit my teaching job and school environment, but being a single parent and times of inflation and son a year away from college, I need to work and that is the only work!
What I find strange is that these neuros push those CGRP meds like Qulipta, Nurtec, and the injections but none of the migraine meds help me! Maybe I am so far “fossilized” now that there is little hope and my quality of life is not great. I come home from work and go straight to bed and unless I fall into a nap, my head pounds with pain and I am unfunctionable.
I have been through similar symptoms and the headache specialist (who gave up on me) also agreed that menopause had something to do with it. I do need to keep working to some level but can’t wait for the day I don’t have to push myself and won’t have to suffer these daily debilitating migraines, despite being on meds.
Thanks for coming here. I hope you find a lot of support, just as I did. This is the only place where they had an understanding of my symptoms, unlike the doctors I saw starting with my pcp, who have not been supportive. Welcome aboard!

Thanks @Suz for posting. Really helpful to know and reminds me that I still have meds to try out (Aimovig, Quilpta) which gives me some hope!

@Suffering Sorry to hear you are indeed suffering and have had such a rough ride. I’ve been with VM for 9 years now and been unable to work for most of that time. However as mentioned above we need to keep remembering there is almost an endless list of meds (and various levels and various combinations) and strategies that we can try. Not easy I know when symptoms are knocking us back - I can no longer stand the light of this screen and have to sign off after just 2 mins. My latest trial is with HRT - too early to say if helping or not but going to give it a damn good try :slight_smile:

I should also mention my neurologist, Dr Surenthiran, doesn’t believe that migraine meds help those of us with VM. FYI I am taking Nortriptyline 100mg, Venlafaxine 113mg & Clonidine 175mcg.


I’m so sorry for your struggles. Yes, I am also a teacher—elementary. For lights, I have fabric filters that I purchased to dim them and only use one of my two sets. Instead I have few lamps set around the room. I keep my desk on the darker side of the room. I also have earplugs (eargasm) that I use in noisy environments. I’ve found that even if I feel like I’m tolerating the noise, it usually triggers a migraine—vm or pain later in the day or even the next day. Have you read Dr. Shin Beh‘a book on VM? Lots of ideas and might give you a different direction to try with a neurologist.