I just started Ajovy yesterday. Was just wondering if it helped anyone’s MAV? All I could see was people who were on other preventatives too while taking Ajovy.
Hi!
My Neuro wants that I try Ajovy however I read horrendous experiences. I barely have headache, my problem are vestibular symptoms. Did you have SEs? Did your vertigo/dizziness improve?Hope it worked for you!
Hi poppy. I tried Ajovy for 3 months but it had no effect on my VM. However I didn’t experience any side effects at all. Not everyone will experience side effects from a medication and I think it’s important not to pay attention to the horror stories that are online. All medication has potential side effects and I’m sure there are horror stories for any medication. I think Ajovy is definitely worth a try and no more likely to cause horrendous side effects than any of the other meds. I know how scary it is when you’re trying new meds but think about the potential benefits you might feel instead of the horror stories. There are just as many positive stories about the anti-cgrp meds as there are negative ones. Some people find them life changing in a really positive way. I recommend giving it a try.
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Thank you so so much for your kind reply.
I am totally scared because I was put under Lamotrigine that was supposed to be well tolerated. I took the min dose just 6 days and I am still recovering from the worst vertigo crisis of my life. I needed psych help because I could not leave my house for 2 months and needed assistance for everything.
Thanks for understanding.
KR
I’m sorry to hear you’ve had such a bad time. I understand. In the past seven years I’ve only left the house for medical appointments. I spent all my days in my bedroom, many of them in bed not able to eat or do anything at all. VM can be absolutely debilitating. The first 4 medications I tried all increased my dizziness so severely I couldn’t cope with it. I tried Topirimate for all of 4 days before having to stop because I couldn’t stand the increase in dizziness. But I eventually found flunarizine, which has helped me immensely. I was scared to try any meds since all the ones I tried only made me worse rather than better, but it’s only by keep trying them that I found one which works. I know how scary it is but the only way to discover a successful treatment is to try. There are many positive stories about the anti-cgrp meds. Some people have found that they’ve completely changed their lives. Even though it didn’t help me it was one of only two meds I tried that didn’t make me feel worse or cause side effects, unlike the other meds. So I really hope you find something that works for you soon.
Thanks for your experience. I also found some relief from Flunarizine but still motion sickness.
Do you have headache? Mu neuro said that if I got relief from botox for the ache and not for the vestibular symptoms, then it is not vestibular migraine.
I am totally lost. I have pressure in my head, pounding feeling, dizziness the whole day, oscillopsia, phonophobia…so then?
I still get mild headaches which feels like pressure rather than pain. Before I found successful treatments the headache pressure was quite bad, making my head feel very heavy but it was nothing like actual pain. I’ve never had classic migraine type headaches. What your neuro said about getting relief from Botox meaning it’s not vestibular migraine seems odd. What data are they basing that opinion off? I would challenge that or ask them more about it if they mention it again. I haven’t tried Botox myself. The fact that flunarizine gave you some relief would seem to suggest it is vestibular migraine because flunarizine isn’t used to treat anything except migraine dizziness. I’m not a medical professional, obviously, but I would ask them more about their opinion. Or ask for a different neuro if they don’t think it’s VM.
In the past I have been taking Ajovy for 3 months without anything else and the effect was that the migraine was stopped in its tracks but I got strain headaches instead of the migraines. It was still a preferable trade if you ask me. I also found that while it does replace the migraine dizziness with headaches it doesnt help me to prevent migraines. I started taking flunarazine (sibelium) 3 months into ajovy and that combination seems to work for me as I am no longer chronically dizzy. Unfortunately I am getting slightly depressed on flunarazine which is not ideal.
The good thing about ajovy is that it has few side effects and works rather quickly compared to some other medication out there. I felt relief within a few hours.
Hope it helps you as well.