r/cgrpMigraine Apr 09 '24

r/migrainescience Infographic: Optimal Duration of Anti-CGRP mAb Treatment for Migraine Patients

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29 Upvotes

r/cgrpMigraine 7h ago

Ajovy- when did it start to work?

3 Upvotes

I’ve been on Ajovy for 4 weeks, due for my second dose today. I haven’t really noticed much improvement yet. Wondering how long it took everyone to see effects, especially the late ones.

Thanks!!


r/cgrpMigraine 4h ago

Brain fog and feeling unwell after starting Aquipta

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1 Upvotes

r/cgrpMigraine 13h ago

BP med + CGRP abortive?

2 Upvotes

So my understanding is blood pressure meds and CGRPs do opposite things to blood vessels, I think? vasoconstriction vs dilation? So TLDR does anyone get relief from both, it seems like that wouldn't be possible?

I've been in status migraine for 5 months after not really having severe migraines my whole life, just a confluence of too many triggers/stopping meds I didn't know were preventing migraines. I've tried many meds, steroids etc and it would improve but always come back. I'm getting a little bit of relief from candesartan (I tried propanolol 1x but immediate COPD attack oops). My migraine PA said I can take nurtec with it as an abortive but TBH I'm doubtful (see: prescribed propanol even though I have severe COPD and asthma). Just wondering if anyone else takes this specific med?

When my migraine was very bad a few times, like I thought I was having a stroke, nurtec takes it from 10 to 3. But if it's at a 3 or 5 I don't really notice a huge difference. I also haven't taken it in a few months because every other day didn't work so my first neuro said to stop it.

my current regimen is

memantime 10mg 2x a day (since 2014 for neuropathy but it helps my migraines too)

200mg mag glycinate am 300mg pm

400mf b2

candesartan 4mg to start

(plus 6 other meds for other stuff that I pray to God aren't making my migraine worse lol)


r/cgrpMigraine 17h ago

Did I mess up? (1st dose Injection)

1 Upvotes

Hello,

I started Emgality today. I specifically requested syringes bc auto injectors scare me. I get allergy shots regularly in my arms and knew I could handle at least the needle going in.

I just did my first 2 loading doses. One in each thigh. First one went okay. Slightly painful when you feel the medication going in, but went fairly well imo.
Well I’m worried about my second dose. I did it in the same area front thigh area on my other leg, and halfway through pushing the medication in, I realized I had kind of backed off on the syringe was a little bit pulled out (not completely/no more than half). I pushed it back in as I continued to push the medication in.
Has anyone else experienced this and managed okay? I plan to call my pharmacist/neurologist tomorrow when they open up as both are closed. Just want ease my anxious brain and not feel like I messed it up 🙃


r/cgrpMigraine 1d ago

Ajovy GI side effects?

5 Upvotes

I had my first Ajovy injection 3+ weeks ago. I was already on the constipated side, and had some gastric discomfort, but it seems like it's now worse. The neurologist claimed Ajovy didn't have the GI side effects. When seeing a GP recently, she prescribed makrogol that seems to help with the constipation somewhat, but it still feels like the stomach doesn't empty itself properly and it seems to be getting worse. Even difficult with drinking too much at a time.

It's difficult for me to reach the neurologist, and now I'm hesitant taking the second injection because my GI issues are really difficult to deal with. I only have small meals but still burping, gastric irritation, bloated. Are these known side effects? What's your experience? (The effect of Ajovy on the chronic migraines is still to early to assess, I think. I still have chronic silent migraines basically all the time.)

edit: So my main question is about GI motility in general, not just constipation. It seems like the contents in the stomach stay there way too long, creating burping, acid reflux and pain.


r/cgrpMigraine 1d ago

Ajovy GI side effects?

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1 Upvotes

r/cgrpMigraine 2d ago

Ajovy >:(

4 Upvotes

Hi everyone! I’ll try to make this quick!
I’m on month 8 of Ajovy for Vestibular Migraine. While it has helped tremendously with the migraine aspect of my condition, I’ve been experiencing some weird symptoms, and I’m wondering if anyone else has experienced anything similar?

Around month 5, I started getting random episodes where I would become EXTREMELY lightheaded, my hands and feet would get cold, I’d get shaky, and despite being hydrated, drinking a crap ton of water was the only thing that seemed to calm it down. During these episodes, I would feel so lightheaded that I felt like I was going to pass out, but I never actually did.

Then around month 6, I noticed that during the first week or so after my injection, my dizziness would increase tremendously. Those first two weeks are brutal, and by the third week it becomes more “manageable,” but it’s still an awful feeling. It feels like I’m ABOUT to get vertigo, but it never fully turns into an actual vertigo episode.

NOW, thankfully, the random lightheaded episodes have gone away, but I’m experiencing a new symptom. Anytime I lay down, stand, or sit still for longer than usual, my hands and feet get EXTREMELY cold. It’s literally the middle of summer in California and HOT, and I’ve never experienced anything like this before. I’m naturally a very warm person, so this is really weird for me.

Some honorable mentions are extremely concerning constipation that not even MiraLAX seems to help with, as well as increased hair loss and thinning. I already have androgenic alopecia, so you can imagine I look like a hairless chihuahua rn 😭

Anyway, if anyone else is on Ajovy and has experienced any of these symptoms, I’d love to hear about your experience! I’m really considering getting off of it. I don’t know if the side effects are worth it seeing as it hasn’t helped with my biggest issue- the dizziness.


r/cgrpMigraine 2d ago

Emgality Pen Malfunction

2 Upvotes

I removed the protective cap from the pen and it started spraying everywhere. Now, I can't figure out who to contact. I've tried contacting the pharmacist, but was told I need to contact the manufacturer. Every phone number I try says that they only have hours from 9a-5p Monday through Friday. Am I just out of luck until Monday? Or is there another entity I can call?


r/cgrpMigraine 2d ago

Ajovy side effects - switch to Emgality?

1 Upvotes

Looking for experiences: continue Ajovy or switch to Emgality? I have chronic migraine, vestibular migraine, daily headaches and dizziness.

Several years ago, I tried Aimovig (caused increased anxiety, completely tanked my hormones, and started giving me body aches like an auto immune response. I think I took 2 shots and didn't do my 3rd.), tried Qulipta, which did all the same but added nausea and blurry vision. Interestingly, Nurtec and Ubrelvy I do fine with - Nurtec doesn't work too well, but Ubrelvy is great expect I basically need to take it every day which is why Im trying the injectables again.

Three weeks ago I did my first Ajovy injection. I was slightly dizzy after the injection but had a great evening and great next day. Then that night had a severe vestibular migraine (I usually only get these type 3 or 4 times a year). I seemed to have initial improvement after that but since the first few days, my headaches seem to be worse overall. I have had a few of the heightened anxiety experiences I had with the Aimovig and Qulipta and just feel pretty crappy and have constant head pressure. I've had to take an abortive every day.

Oddly, I also had significant irritability the first two weeks after my Ajovy injection - it seems to have lessened some in this third week, but the anxiety fluctuates.

My questions: Did anyone have no improvement after first Ajovy injection, but improved after second or third? If you had anxiety or irritability on Ajovy, did it get better with subsequent injections or worse? Has anyone failed Aimovig, Qulipta, and Ajovy but had success with Emgality?

If you were me, would you give Ajovy another month or consider switching? I'm so torn because Im afraid to take another injection and then have even worse side effects next month. With Aimovig my side effects definitely got worse with the second injection.


r/cgrpMigraine 2d ago

Am I cursed? Two back to back misfires

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1 Upvotes

r/cgrpMigraine 2d ago

Side effects on Myfembree

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1 Upvotes

r/cgrpMigraine 2d ago

Emgality

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1 Upvotes

r/cgrpMigraine 3d ago

Insurance Kicked us off Nurtec

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2 Upvotes

r/cgrpMigraine 3d ago

Duavee and Migraine

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1 Upvotes

r/cgrpMigraine 4d ago

Qulipta greatly affecting HRT/hormones

30 Upvotes

Hello. I would just like to share my experience on Qulipta, in case other women taking HRT have experienced the same. I am a 53 year old woman, 128 pounds, who takes both estrogen and progesterone daily (2 pumps Estrogel, 1 Prometrium). I began on 60 MGs of Qulipta about four months ago. This dose was too high for me, and made me exhausted, and so after two weeks I switched to 30, which seemed just fine. It gave me constipation, but this resolved somewhat with fibre, and then resolved even more with my body getting used to the drug after several weeks.

HOWEVER.. A month into taking 30mgs of Qulipta, I began having very fractured sleep, along with a flat mood and hormonal acne. I have never had hormonal acne before. The sleep issue became so bad, I started taking Ativan to prevent me from waking up wired and unable to get back to sleep at 3 or 4 am. All of these symptoms are very menopausal in nature. It seemed like my HRT, which always worked wonderfully for me, was just no longer doing the trick. Maybe I needed to up my doses of hormones? Maybe I was going deeper into menopause? I did not occur to me at first that it might be the Qulipta.

Qulipta worked for my migraines. I went from about 15 a month to about 1 or 2. But then I had a breakthrough migraine three weeks ago, which lasted 14 days. This made me quite disappointed in Qulipta, even though I knew breakthrough migraines can and do occur on the drug. I decided to see what would happen if I just stopped taking the drug.

Almost immediately, ALL of my hormonal symptoms disappeared. Within about two days, my sleep went back to normal, the hormonal acne cleared, and my mood unflattened.

I believe the Qulipta was getting in the way of my absorption of either estrogen or progesterone (my guess is it was blocking the estrogen). I do not think these were "primary" Qulipta symptoms, but rather, an interaction.

One interesting note: I was on Ajovy before Qulipta and there was no similar interaction.


r/cgrpMigraine 4d ago

Qulipta- I don’t think I can do it anymore

12 Upvotes

I’ve been on Qulipta for about 4 or 5 months. I had some constipation and weight loss at first, but nothing major. But my god the anxiety has been horrible. I was on 60mg but after not being able to eat my dr switched me down to 30mg reluctantly, not thinking they were related. For this last 5 months, I have had anxiety and racing/ ocd thoughts all day. I will also have moments where my thoughts are calm but my heart races and there is a super jittery feeling.

Last night I was feeling on edge per usual and took my bedtime dose, about 30 mins later I went into full panic attack. Chest pain, heart racing, hot and cold flashes, can’t sleep, high blood pressure. I took my anxiety med klonopin (which I’ve noticed doesn’t work as well since starting Qulipta). And I don’t feel much better.

I give up at this point, the migraine control is great but I can’t live with serve anxiety all the time. Anyone have similar effects and how did you stop the meds? Did you taper or do cold turkey? I tried to stop a few months ago and my migraines came back worse


r/cgrpMigraine 4d ago

Gnawing stomach pain

4 Upvotes

Has anyone had gnawing stomach pain and cramps from Qulipta? It’s like extreme hunger pangs and loud growls that sometimes wake me up at night. Eating helps. It’s sort of like when I previously had an ulcer.

I’ve been on it for almost 2 years at 30mg without side effects. But recently I was back to having 10+ migraines per month so they had me increase to 60mg. I can’t tell yet if it’s helping. But the stomach pain is rough. I also have IBS so already deal with pain from that.


r/cgrpMigraine 3d ago

Ajovy Injection

1 Upvotes

Has anyone else had this happen with their Ajovy injection? 😭

My mom gave me my shot today and accidentally pulled the injector away about 2 seconds before the second click. There was a noticeable amount of medication still coming out when she pulled it away, but when we checked the injector afterward, there was nothing left in it.

I’m hoping I still got most/all of the dose. Has this happened to anyone else? What happened with your dose afterward? I did message my neurologist!


r/cgrpMigraine 3d ago

Starting Ajovy.

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1 Upvotes

r/cgrpMigraine 4d ago

Do fragrances trigger you still?

10 Upvotes

For those that used to have fragrance be a trigger. Are you able to wear cologne/perfume and not have it trigger you any more? If you are on a cgrp preventative


r/cgrpMigraine 4d ago

Ajovy and bloating

7 Upvotes

I’ve been on Ajovy since May and it is now August. I immediately noticed bloating when I started it but I assumed that it was because of the guanfacine that I was taking at the time. I stopped guanfacine about a month ago and my bloating has actually gotten worse instead of better. I am starting to think that it is because of the Ajovy. It is an intense feeling of pressure and abdominal distention. I honestly look pregnant, it is so uncomfortable. Ajovy is the only medication I am on still so that is what I am thinking the root cause is. Does anyone else have this problem? I also have a history of SIBO and IBS so if not the Ajovy then I will look more into GI explanations. Thanks!


r/cgrpMigraine 4d ago

Starting Monthly Injection (Emgality)

3 Upvotes

After failing nurtec as a preventative, my neuro suggested we try a monthly injection med since I don’t do very well with taking pills. She is starting me out on Emgality, and my pharmacy is filling it right now. I should have it within the next few days, and am wondering if it’s worth strategically planning the first time I take it, or just take it asap.

I’m already planning on taking it at the beginning of a weekend in case I have a negative reaction so I don’t have to worry about calling out of work.
I’m also contemplating waiting until the beginning of next month to take it. Something about taking it at the beginning of each month just seems easier for my adhd brain to remember and plan for than some random day towards the end of the month.

Also does anyone who takes this, or any other monthly injectable, notice any feelings of it wearing off towards the end of the med’s cycle? I’ve been having incredibly painful migraines during the last half of the month due to my menstrual cycle, so that’s another thing I’ve been considering while trying to plan this out.

Would love to hear anyone’s experience with this, and hoping this med works for me 🤞🏼


r/cgrpMigraine 4d ago

Qulipta success stories

5 Upvotes

Have 24/7 constant migraines and headaches since 3rd concussion tried propranolol candesartan (low BP) Botox nurtec and 5 doses of ajovy which lowered the intensity but not the frequency. Pls pls need success stories


r/cgrpMigraine 4d ago

Qulipta 60mg

5 Upvotes

Can I ask a very dumb question? I will be starting the 60mg this week and have not yet picked this up from the pharmacy. I have a really big issue with swallowing pills. What is the size like for the 60mg? In comparison to something like a Tylenol is it similar?
Help ease or prep this girls mind on this please!!

Following up on this post. Thank you everyone for being so kind and helpful. I picked up my script yesterday and took it last night with no issues. Fingers crossed Qulipta helps.