r/cgrpMigraine

I just came home from a trip to find that the dogsitter didn't close the fridge totally.

The temp in there is 58 degrees. I don't know how long this has been the case.

There are four (expensive) doses of Emgality in there. :(

I've been on it a few months now, and it seems to be helping.

My first dose was a double dose. All doses after that have been single doses.

My next dose is due soon.

I'm tempted to make it a double, assuming that im going to have to throw away two doses.

Frustrating.

My dr said to take nurtec every other day to break this migraine along with getting ajovy shot which I did Monday. It helps some, but it's always back by the end of the day. But for how long can I take the nurtec every other day? I thought she said a week but would it be bad if I did it for longer? She did do a refill but didn't specify.

I'm confused by my neuros directions and she just referred me out to UCSF Headache Clinic because my 6 week migraine has not responded to ajovy x1, nurtec 3 days in a row, steroid pack, tiz 4mg or compazine at the ER. So now I have a debilitating headache and have to wait 2-8 weeks for a new doctor 😭 if I can do the nurtec every other day i would prefer that...

How many days would you recommend postponing Ajovy before a vacation at most? Mine will be 6 days late. So day 34 instead of 28. Is that bad? This wil be my 4th injection.

Past 30 days and the loading dose half life is supposed to die off by then (4 days over the 30 days) and im not continuing the medication due to severe side effects as i posted

When will i stop having these side effects? 🙁 want to know if anyone had this happen to and how long till they felt their selves again.

I’ve had an intractable migraine for the last 60 days which got triggered after having surgery and coming off the Tylenol / Gabapentin / NSAID combo from my surgeon. I always struggled with migraines but never something that lasted more than a day or two at a time.

I’ve been on Qulipta before and it hadn’t helped.
I’ve tried Nurtec and Ubrevly during this migraine episode with no improvement.
I’ve started Emgality and am about two months in.

1. For those who took Emgality, how long did you try it before another similar medication? (I’d consider aimovig because it works well for my aunt and migraines run in the family)

2. Has anyone gotten their status migraine broken after being on a CGRP related medication? How long did it take? Any advice?

Thanks 🙏🏼

For context, I’ve had migraines with aura for 25 years. Four years ago they turned chronic and I’d have migraines anywhere from ten days to three months. Currently in a four month cycle. It’s like I get a migraine that last a couple weeks but the pain never goes away and/or everything gives me a headache. Too long without eating, anything touching my head (had to cut my hair, no hats, no beanies, my glasses hurt, even a very loose bandana), get stressed, get tired, lights too bright, too many different brightness’s of lights, ate something that gave me the ick, a smell my brain didn’t like…. you get the idea, everything gives me a headache. And then I get another migraine.

I’ve failed more meds than I can remember the names of. I’ve been doing Botox for two years, it helps for about a month in between injections, makes them less intense anyways. Ubrelvy failed. Nurtec helps with the body feeling/feeling like shit but does nothing for the pain, and I think shortens the migraine. I’ve done one round of Ajovy but now insurance approved Vyepti, so switching to that.

My soon to be treatment plan… Botox rotated with Vyepti (one every six weeks), nerve block and trigger point injections two weeks before Botox, nurtec and baclofen for abortives, and gabapentin for a preventative.

Just curious if anyone else has a similar treatment plan.

TIA!

Took the loading dose 2-3 weeks ago. I am a menstrual migraine sufferer, with migraines about half the days of the month, concentrated around my period. My period came very early, and was very unexpected - mainly because there were no symptoms? Normally it’d be multiple days of warning migraines, migraines every day of the period, and migraines for a week or so after the period ends.

I’m on day 6 of my period with 0 migraines. I was traveling. On planes. Been through bad weather. Ate bad. Dehydrated. Drank alcohol (like 5 drinks). Sun exposure. Literally ALL of the things that normally would be instant triggers - nothing.

I know emgality isn’t supposed to work this fast but it’s gotta be, right? This is insane? I haven’t gone a whole period without a migraine in at least 7 years, let alone without a headache??

Having a great time on emgality!

I’ve been taking different doses for a while now since start of year for sinus tachycardia and migraines it worked well for the hand tremors and pulse but it was very short lived, I will give me doses below.

Started on 40mg x 3 a day didn’t last long I had the worse brain fog fatigue and stomach issues so then reduced.

10mg x 3 a day this again wasn’t strong enough didn’t keep my pulse down for long and the headaches where creeping in as well and aura migraines which I never had before.

Doctor then put me up to 20mg x 3 a day this again didn’t do much my migraines where there in the background Im suffering with the drunk hungover feeling all day every day and I don’t drink or take anything so really not agreeing with my pulse spikes various points throughout the day so they suggested 40mg twice a day started that and boom stomach issues straight away like when I first started taking it.

My brain fog fatigue head pressure feeling is really ruining my life I’m so tired all the time can’t think straight I feel as if I have a constant migraine without the head pounding. I’m still super stressed and under a lot of pressure but this is how my body has been behaving now since end of last year and because my memory has been so bad I can’t connect the dots in terms of has this medication made me worse or where is silencing the migraines to a degree but I’m not testing the root cause.

I’m just so tired and sick of it now it’s seems I’m just stuck in this migraine loop and postdome I can’t escape.

I’ve done all my bloods including vitamins and everything has come back fine so not lacking anything to feel this rough. I’ve given this medication a go and been so patient with it but it’s just not agreeing with me.

I don’t want to take migraine medication as all this does is make you sleepy I need to try to find a solution to the madness as this quality of life is awful it’s day - night this awful foggy head can’t concentrate.

I would also like to add I have a brain MRI privately and this came back all fine.

Hey guys! I suffer from intractable migraine... daily headaches.. I'm on emgality and all I can say it's bad with it and worse without it... I always end up with a worse headche the day after I do emgality which takes days to get a bit better... Does this happen do anyone? I'm so beyond tires... In my country only those 2 options are available... Tried nurtec before and it didn't do anything for the pain...

Recently my migraine has gotten much worse and I’ve been having daily crises. I’ve been taking triptans for a long time and it works very well for me, but now I’ve discovered that if I take more than 14 per month I can develop a migraine due to medication abuse. What to do if no other medicine other than tryptans help?

“re:” because i know it’s been posted about before but…i have tried my thigh, stomach, and butt—i think it’s just painful (for a good amount; for those that it isn’t painful, i don’t want to hear advice).

at this point, i switch butt cheeks every month (lol), take emgality out of the fridge 30m to an hour before, and ice the injection site. i have lidocaine, but that didn’t do any more to stop the pain than icing it does.

honestly, i guess i just want some affirmation that it really hurts as much as it does…like the medicine itself, not the needle/injection pen.
i have gotten tattoos over bone, this hurts more.
i have dislocated my shoulder, this hurts more.
i have fallen down a flight of concrete stairs, this still hurts more.

to be clear: it’s way worth the pain for me. before emgality i had 18+ migraine days a month (many exceeding 2 days and 9/10 pain), and on emgality i have less than 5 migraine days a month (usually less painful—like in between 4-8). so…does ajovy/aemovig work as good as emgality without injection pain? are there other CGRPs that work as good as emgality? i guess i could probably ask my neurologist all this in a few days, but i love you reddit😘

edit/update: thank you so much for everyone’s replies! i needed those affirmations that i’m not being overdramatic 😂

Anyone know when this drug will be approved by the FDA for <18?

Hi I’m 130 days since my last injection and I can’t sleep more than four hours a night - it just gets worse and I’m freaking out. If anybody has success stories with sleep recovery I would so appreciate
Thanks

hi! i started aimovig 10 days ago and have been constipated since. i am already a constipated person so this was not a surprise to me. i the other medications, i’ve gotten to the dangerous point of constipation (30+ days) , so i want to try to stop this while i’m only on day 10. i’ve been taking Miralax and drinking apple juice for the past 6 days but, is there something else i can do? i do not really want to add magnesium because it gives me quite crazy night terrors. i also don’t really want to add a stimulant laxative that’s going to keep me on the toilet because this just isn’t suitable for my situation. would fiber supplements or high fiber foods be beneficial, or would these not help at this point. i feel that this medication may help me, but i cannot be constipated like this forever!! thankful for all knowledge and experiences!

Has anyone else experienced intense pain with the Ajovy auto injectors? I like the med- it works great and I have very few, if any side effects from it. But the pain while injection is 10/10 bad. It feels like being stabbed with a white hot knife. I can feel it travel through my leg. My husband has to hold me down and inject it otherwise I unintentionally flinch away and end up injecting very expensive medicine onto my couch. I have failed almost every other possible med. I got a prescription for emgality to attempt to switch to the only other thing I haven’t tried and couldn’t get insurance to even let me try it. So anyone else? And any advice? I leave it out to let the auto injector come up to room temp before I do it.

I’ve had 2 injections so far and I’m entering week 6. It has absolutely helped reduce the severity of my migraines and a lot of the symptoms, so overall I do think it’s helping.

But I still feel like the migraine is kind of “there” in the background? Not full pain, more just an off feeling all the time. Fatigue, low motivation, brain fog-ish, and getting up in the morning has become really difficult.

It’s hard to explain, almost like the migraine has been turned down but not fully switched off.

Not sure if this is part of the adjustment period, a side effect, or unrelated. Curious if anyone else has had something similar and whether it improved over time?

Thank you in advance.

With every ajovy shot it appears my side effects become more and more intensified. Mostly head pressure and weird neurological issues separate from my usual migraine episodes. However, I administered my fourth injection on the 28th and it has caused me to absolutely spiral! Every day since then I have near constant anxiety/panic attacks. I'm having a hard time eating, sleeping, and just functioning in general now. I've dealt with anxiety my whole life and had a pretty decent amount of control over it before this happened, just to clarify. Anxiety is not new to me but this level of panic absolutely is.

I will NOT be taking my fifth shot.

I have an appointment with my psychiatrist on Tuesday which seems so far away when my anxiety is this unbearable. But I am really hoping he can get me close back to my baseline.

Has anyone dealt with this? How long did it take for you to feel relatively normal again?

Don’t really wanna go into detail but Ajovy has saved my life but I have to take Aimovig now. What concerns me is that these seem to work differently and Nurtec did absolutely nothing for me.

Who here takes benzodiazepines such as Valium and thinks that it makes your headaches worse or trigger pain?? I’m trying to figure out what has escalated in my headaches, I’ve been on Valium (low dose) daily for a year as a muscle relaxant…
It’s the only thing I can think of that I’ve changed other than getting older. 🥲

I’ve been on AJOVY for a few years. My husband does my injections for me because the first few months I tried it the initial click made me jump and I didn’t get the full dose.

Normally we have no issue but tonight he was distracted by our dogs and accidentally lifted the injector before the second click. Quite a bit of medication spilled out, and I’m freaking out because the weather is changing and getting warmer and that’s when my migraines typically get worse. It’s been so long since I was doing them myself that I don’t remember what I did when this happened before and I don’t remember how it affected my migraines.

Any advice? Do I wait it out and see what happens with the migraines or just go ahead and call my doctor right away? If this happened to anyone else did it affect the frequency or severity of your migraines? I’m panicking. 😩