Thank you so much for posting this. I’ve been suffering for close to a year and tried Nortriptyline, Topamax, supplements, elimination diet…none of it has done anything. I had my first Ajovy shot mid-May, so I’m encouraged to read this. Fingers crossed it works for me too. Thank you for giving me the timeline - it’s easy to get discouraged when something doesn’t help right away.
I believe it can take up to six months to reach the full level in your body since they sort of build on each other for a while. I felt some help earlier but it was pretty inconsistent until around 5-6 months.
I was in your shoes before. Nothing worked for me before Ajovy.
I'm only a few months into having it regularly and it's helping a lot.
The first two months were hard because I know it takes time to build up in my system, but getting days-long VMs felt like it was completely failing me. Five months in, and the worst episode I had in months lasted for 2 days, but it was right as I was coming down with covid.
Hopefully it helps you too.
I've been told it takes 6 months to build up in your system to be fully effective. It doesn't help my baseline dizziness, but stops most of my episodic vertigo from being debilitating.
I spend a few minutes not being able to function, but that's better than being stuck in bed for days.
One thing Ajovy does not seem help, for me, is VMs triggered by my heat sensitivity. I have terrible body temperature regulation and if the temp outside goes much above 70F I'm stuck indoors.
I don’t know if it’s quite dizziness, but I didn’t realize just how off balance I was all the time until I started getting breaks from it after starting Ajovy.
I have chronic dizziness. I'm 5 months into taking Ajovy and it hasn't helped my baseline dizziness, but it is helping manage the severity when I get an attack.
My baseline dizziness has been around a 4 or 5 for decades.
Not OP but I finally got approved for Ajovy about 5 months ago, after sporadically getting "samples" from my neuro, when they were available.
I still have my baseline 24/7 dizziness but my other symptoms are becoming much more manageable. Triggers, like store lights, or unexpected visual movement still set off extreme vertigo, but it lasts maybe 15 minutes, instead of days, and I don't feel nearly as drained and exhausted when it's over.
I've almost never had painful migraines in the 24 years I've had VMs.
Ajovy isn't some miracle cure, but it's been life-changing for me. I still can't drive, but I don't have to close my eyes in the car as often and I don't feel drained by the end of a normal trip across town just from being a passenger in a moving vehicle.
Seconding this!! I take Nurtec and previously took Qulipta, and the CGRP inhibitors brought me from uncontrolled chronic to trigger-induced episodic. I had to go off for a couple months and went right back to chronic (this all started after initial COVID infection), and then got better again once I went back on.
Wow same. I’m tempted to try out the injections too to be sure I’m on the right med but it’s so hard when the chronic migraines kick back in. Wish insurance would cover more CGRP at a time
I’ m 3,5 months in Ajovy - noticing some relief on pain which is yellow level (green/yellow/red) for me as a baseline. More green days.
But my baseline red debilitating vertigo/dizziness 24-7…… I think Ajovy actually maybe intensifies the vertigo 🤷♀️
Hard to know since I’ m bedridden and have SO much hormonal triggers also, but 🥹🥲
We shall see.
The injection in itself is no problem, if it would only work I would do it daily every hour. I would actually give birth weekly if the insane vertigo and dizziness could stop.
But - I’ m giving in the shot nr.4 and maaaaaybe 5 before I conclude.
What would you say your functional level eas before? Could you take care of yourself at home? Bedridden or some work etc?
Yeah, strangely those supplements worsen my dizziness - which is MEGA annoying since mag helps sleep/leg cramps. B2 was the worst.
I’ m adding Nortriptyline soon.
Seems like all are hit/miss - and - wears off 🥶
I would be relatively functional but it would be really fucking hard and I’d miss out on a lot because I just felt so shit. I was in college and would find it very difficult to socialize at times which led to me being pretty depressed and isolated. While I wasn’t constantly bedridden, migraines would always be on my mind as it was what I was constantly feeling which didn’t leave room for much else
Are you hypothyroid? Many people with vestibular migraine are. No matter how many meds I’m on for the migraine dizziness it becomes intolerable if my TSH is too high.
I have half gland, but not hypo/hyper (try to keep my TSH within 0,5-1). I had that 20 years before getting dizzy, and hypo/hyper never gave me dizziness.
Though: adding Liothyronin (t3) gives me vertigo now that I do have severe dizziness as baseline 🤷♀️ So that was a no go. But then again just existing gives me vertigo 🥶
I’ve tried emgality and Ajovy. Emgality worked for awhile, then stopped. So we switched to Ajovy. Worked great for 1 month, since then I’m back to daily migraines.
They are worth a try, but not always the silver bullet we are all hoping for.
How long did you take it?
I'm not cured, but almost 6 months of being on Ajovy is really kicking in for me. I recently went 8 days without going above my baseline dizziness for more than a few hours. Before I'd be down for days.
I still have daily dizziness. It's been at a level around 4 or 5 for the last 24 years, and so far Ajovy hasn't touched that, but it helps with the extreme vertigo I get that is triggered by various things like the lights in a grocery store, or someone tossing me an object (like a towel, or a ball).
Exactly, that is my impression of cgrps for dizziness om most pherhaps. It can target attacks, but I’ m not sure of the daily.
I’ m 9 out of 10 24/7 - was worse before.
So I’ m on the search to target the daily as a first priority. But maybe cgrp ia not the answer for that 🤷♀️ Although some say both:
Helped attacks - neutral or worsened the daily
Helped both
Yeah….I guess I’ ll have to chuck down some preventatives and try Botox on top.
Jesus your username 😂😂😂😂😂
Stick with it migraines oscillate (at least for me) between good and bad periods. I definitely had some time during the first couple months where I experienced bad vertigo and other severe symptoms and thought that the drug wasn’t doing anything. My best advice would be to stick with it over 6 months there’s no harm
Ajovy worked well for me for around 8-9 months. I would say it was more of a silver bullet for my more classic migraine symptoms than vestibular, although it certainly helped.
Then, it stopped. HOWEVER, I was also going through a crazy stressful time in my life that spiked my anxiety so bad, I’m not sure if it was the Ajovy that stopped working, or it didn’t matter if it worked or not, since my nervous system was such a wreck.
I had zero side effects while I was on it (except itchy at injection site for a few days, but no big deal). It’s a great drug and I’m so happy to hear you’ve had success with it be can get your life back!!
Did they diagnose you with VM ?
What other medications have you tried before trying this ?
I've been dealing with this for 4 years...tried a couple medications but don't seem to help.
Did a couple test still need to see my results but I'm 90 percent sure it's my thyroids.
Never been tested. And just did blood work. Literally testing for everything. including TSH and T4.
A fellow reddit user brought it up but I didn't pay much attention to it till today when I was in bed all day.
Alot of of my symptoms align.
Here’s an unupdated list that I used to send new doctors/neurologists:
I’ve had vestibular disorders for about 8 years, I have an extensive medical history and have taken the following therapies/drugs: vestibular therapy, Zofran, various SSRI’s, some IV therapy, rizatriptan, nortryptline, sumatriptan, various vitamin supplements (zinc, riboflavin, magnesium, super-b complex, and more). I’ve done every test imaginable with neurologists, ENT’s, etc with promises at every turn that a certain therapy or medication will be sure to help but it never does. The rizatriptan worked decently for some time when it got bad but doesn’t seem to work anymore. There’s def some others that I’m forgetting as well
I needed this. Thank you. I’m living in that cautious haze of pre & post migraine hell, plus fear of triggering the next one.
I’m scared to death of injecting a month of meds…because Qulipta makes me too drowsy.
Yet Nurtec has no side effects but barely works. Maxalt - hard pass, drowsy. The trial & error is exhausting
Ajovy has legit 0 side effects for me and is the same for most people who take it. I’m telling you after the first injection it’s just like a routine thing. When I do it every month now I’m not nervous at all, it’s done in 15 seconds then I forget about it and go about my day.
Thank you for posting this. I have an Rx for Ajovy but have been scared to try it because I've had anaphylaxis to injectables before. It doesn't contain my known allergy, but I'm still scared of it… planned to try it in the parking lot of the ER just in case and it's just… so anxiety-inducing. But every other day Nurtec is not working as well for me as Ajovy is working for you.
I love hearing this, after a year of migraine Botox with minimal improvement my dr prescribed ajovy today and I was really nervous about it. I feel much better after reading this thank you!! Although I won’t be drinking or smoking 🫢
Thank you so much for posting this. I’ve been suffering for close to a year and tried Nortriptyline, Topamax, supplements, elimination diet…none of it has done anything. I had my first Ajovy shot mid-May, so I’m encouraged to read this. Fingers crossed it works for me too. Thank you for giving me the timeline - it’s easy to get discouraged when something doesn’t help right away.
I believe it can take up to six months to reach the full level in your body since they sort of build on each other for a while. I felt some help earlier but it was pretty inconsistent until around 5-6 months.
I did the same (nortryptline/topamax). Did nothing except give me terrible side effects.
I was in your shoes before. Nothing worked for me before Ajovy. I'm only a few months into having it regularly and it's helping a lot. The first two months were hard because I know it takes time to build up in my system, but getting days-long VMs felt like it was completely failing me. Five months in, and the worst episode I had in months lasted for 2 days, but it was right as I was coming down with covid. Hopefully it helps you too.
Still going strong with Ajovy Bob? I got to 3 months and stopped as nothing changed? Should have I kept going??????🤷♂️
I've been told it takes 6 months to build up in your system to be fully effective. It doesn't help my baseline dizziness, but stops most of my episodic vertigo from being debilitating. I spend a few minutes not being able to function, but that's better than being stuck in bed for days. One thing Ajovy does not seem help, for me, is VMs triggered by my heat sensitivity. I have terrible body temperature regulation and if the temp outside goes much above 70F I'm stuck indoors.
Also btw I’ve been suffering from vestibular migraines for almost 10 years
Did this help anyone with chronic dizziness?
I don’t know if it’s quite dizziness, but I didn’t realize just how off balance I was all the time until I started getting breaks from it after starting Ajovy.
I have chronic dizziness. I'm 5 months into taking Ajovy and it hasn't helped my baseline dizziness, but it is helping manage the severity when I get an attack. My baseline dizziness has been around a 4 or 5 for decades.
This is the answer that I’m looking for!!
Does this work for neuro and visual symptoms associated with migraine or just headache ?
I don’t usually get physical pain I get light headedness, vertigo, floaters, brain fog, fatigue, etc. So yes
Thank you! I’m the same, I was trying to decide if I should ask my doctor about ajovy
Not OP but I finally got approved for Ajovy about 5 months ago, after sporadically getting "samples" from my neuro, when they were available. I still have my baseline 24/7 dizziness but my other symptoms are becoming much more manageable. Triggers, like store lights, or unexpected visual movement still set off extreme vertigo, but it lasts maybe 15 minutes, instead of days, and I don't feel nearly as drained and exhausted when it's over. I've almost never had painful migraines in the 24 years I've had VMs. Ajovy isn't some miracle cure, but it's been life-changing for me. I still can't drive, but I don't have to close my eyes in the car as often and I don't feel drained by the end of a normal trip across town just from being a passenger in a moving vehicle.
Yes exactly, hopefully even more effective drugs will be made accessible soon as cgrp inhibitors have only hit the market in the last 4 years or so
Seconding this!! I take Nurtec and previously took Qulipta, and the CGRP inhibitors brought me from uncontrolled chronic to trigger-induced episodic. I had to go off for a couple months and went right back to chronic (this all started after initial COVID infection), and then got better again once I went back on.
Wow same. I’m tempted to try out the injections too to be sure I’m on the right med but it’s so hard when the chronic migraines kick back in. Wish insurance would cover more CGRP at a time
I’ m 3,5 months in Ajovy - noticing some relief on pain which is yellow level (green/yellow/red) for me as a baseline. More green days. But my baseline red debilitating vertigo/dizziness 24-7…… I think Ajovy actually maybe intensifies the vertigo 🤷♀️ Hard to know since I’ m bedridden and have SO much hormonal triggers also, but 🥹🥲 We shall see. The injection in itself is no problem, if it would only work I would do it daily every hour. I would actually give birth weekly if the insane vertigo and dizziness could stop. But - I’ m giving in the shot nr.4 and maaaaaybe 5 before I conclude. What would you say your functional level eas before? Could you take care of yourself at home? Bedridden or some work etc?
Give it a couple more months and make sure you are taking vitamins like magnesium, riboflavin, super B, etc
Yeah, strangely those supplements worsen my dizziness - which is MEGA annoying since mag helps sleep/leg cramps. B2 was the worst. I’ m adding Nortriptyline soon. Seems like all are hit/miss - and - wears off 🥶
I would be relatively functional but it would be really fucking hard and I’d miss out on a lot because I just felt so shit. I was in college and would find it very difficult to socialize at times which led to me being pretty depressed and isolated. While I wasn’t constantly bedridden, migraines would always be on my mind as it was what I was constantly feeling which didn’t leave room for much else
Are you hypothyroid? Many people with vestibular migraine are. No matter how many meds I’m on for the migraine dizziness it becomes intolerable if my TSH is too high.
I have half gland, but not hypo/hyper (try to keep my TSH within 0,5-1). I had that 20 years before getting dizzy, and hypo/hyper never gave me dizziness. Though: adding Liothyronin (t3) gives me vertigo now that I do have severe dizziness as baseline 🤷♀️ So that was a no go. But then again just existing gives me vertigo 🥶
I’ve tried emgality and Ajovy. Emgality worked for awhile, then stopped. So we switched to Ajovy. Worked great for 1 month, since then I’m back to daily migraines. They are worth a try, but not always the silver bullet we are all hoping for.
How long did you take it? I'm not cured, but almost 6 months of being on Ajovy is really kicking in for me. I recently went 8 days without going above my baseline dizziness for more than a few hours. Before I'd be down for days.
As in you did not have effect until 6 months on daily dizziness?
I still have daily dizziness. It's been at a level around 4 or 5 for the last 24 years, and so far Ajovy hasn't touched that, but it helps with the extreme vertigo I get that is triggered by various things like the lights in a grocery store, or someone tossing me an object (like a towel, or a ball).
Exactly, that is my impression of cgrps for dizziness om most pherhaps. It can target attacks, but I’ m not sure of the daily. I’ m 9 out of 10 24/7 - was worse before. So I’ m on the search to target the daily as a first priority. But maybe cgrp ia not the answer for that 🤷♀️ Although some say both: Helped attacks - neutral or worsened the daily Helped both Yeah….I guess I’ ll have to chuck down some preventatives and try Botox on top. Jesus your username 😂😂😂😂😂
I’ve been on this one 3 months but I was on emgality for a year. I have a neurologist appointment today so we will discuss how to move forward.
Stick with it migraines oscillate (at least for me) between good and bad periods. I definitely had some time during the first couple months where I experienced bad vertigo and other severe symptoms and thought that the drug wasn’t doing anything. My best advice would be to stick with it over 6 months there’s no harm
I have vestibular migraines but few headaches. Can I still get that injection?
I do!
Ajovy worked well for me for around 8-9 months. I would say it was more of a silver bullet for my more classic migraine symptoms than vestibular, although it certainly helped. Then, it stopped. HOWEVER, I was also going through a crazy stressful time in my life that spiked my anxiety so bad, I’m not sure if it was the Ajovy that stopped working, or it didn’t matter if it worked or not, since my nervous system was such a wreck. I had zero side effects while I was on it (except itchy at injection site for a few days, but no big deal). It’s a great drug and I’m so happy to hear you’ve had success with it be can get your life back!!
I have the same itchiness and redness after injecting it but yeah it goes away within a day or 2
I HEAVILY second this
I agree with this 100%. CGRP monoclonal antibodies is game changer! UBRELVY (rescue) QULIPTA NURTEC AIMOVIG AJOVY EMGALITY VYEPTI
What was your daily VM dizziness like? And other daily symptoms? Any rocking or swaying/Bobbing or ground feeling like it’s moving under your feet?
I still get VM symptoms with Aimovig/erenumab
Did they diagnose you with VM ? What other medications have you tried before trying this ? I've been dealing with this for 4 years...tried a couple medications but don't seem to help. Did a couple test still need to see my results but I'm 90 percent sure it's my thyroids. Never been tested. And just did blood work. Literally testing for everything. including TSH and T4. A fellow reddit user brought it up but I didn't pay much attention to it till today when I was in bed all day. Alot of of my symptoms align.
Here’s an unupdated list that I used to send new doctors/neurologists: I’ve had vestibular disorders for about 8 years, I have an extensive medical history and have taken the following therapies/drugs: vestibular therapy, Zofran, various SSRI’s, some IV therapy, rizatriptan, nortryptline, sumatriptan, various vitamin supplements (zinc, riboflavin, magnesium, super-b complex, and more). I’ve done every test imaginable with neurologists, ENT’s, etc with promises at every turn that a certain therapy or medication will be sure to help but it never does. The rizatriptan worked decently for some time when it got bad but doesn’t seem to work anymore. There’s def some others that I’m forgetting as well
Were you having frequent vertigo attacks? If so, did it help with the vertigo? Glad you found something!
Yes it happens FAR less frequently now (though not a complete cure)
I needed this. Thank you. I’m living in that cautious haze of pre & post migraine hell, plus fear of triggering the next one. I’m scared to death of injecting a month of meds…because Qulipta makes me too drowsy. Yet Nurtec has no side effects but barely works. Maxalt - hard pass, drowsy. The trial & error is exhausting
Ajovy has legit 0 side effects for me and is the same for most people who take it. I’m telling you after the first injection it’s just like a routine thing. When I do it every month now I’m not nervous at all, it’s done in 15 seconds then I forget about it and go about my day.
This is so encouraging and gives me hope! I am sick of more pills. I don’t process them well. Thank you!!
Thank you for posting this. I have an Rx for Ajovy but have been scared to try it because I've had anaphylaxis to injectables before. It doesn't contain my known allergy, but I'm still scared of it… planned to try it in the parking lot of the ER just in case and it's just… so anxiety-inducing. But every other day Nurtec is not working as well for me as Ajovy is working for you.
I love hearing this, after a year of migraine Botox with minimal improvement my dr prescribed ajovy today and I was really nervous about it. I feel much better after reading this thank you!! Although I won’t be drinking or smoking 🫢
So what is in it and what does it do the body?