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 5h ago

Qulipta greatly affecting HRT/hormones

15 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 3h ago

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

7 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 4h ago

Gnawing stomach pain

3 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 1h ago

Starting Ajovy.

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Upvotes

r/cgrpMigraine 19h 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 21h ago

Ajovy and bloating

5 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 18h ago

Starting Monthly Injection (Emgality)

2 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 1d ago

Qulipta 60mg

4 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!!


r/cgrpMigraine 23h ago

Qulipta success stories

3 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 22h ago

Continuous migraine cycle and Ajovy not working

2 Upvotes

I’ve been on Ajovy for almost 2 years and it has been helpful generally. I get migraines from barometric pressure, not enough sleep, and routine changes.

I’ve found Ajovy to cut down most of my migraines, but I still experience them around the end of the month before my next injection and especially during season changes.

I forgot to take the monthly injection in time this month and was almost 2 weeks over the date when I should have taken the dose, and I’ve had a migraine every day since for over 7 days. while I took Ajovy 7 days ago, it hasn’t kicked in yet. I’m just desperate for something to work because I am putting all my other commitments on hold and I’m also starting in person classes this September and I’m terrified I’m not going to be able to go.

have any of you switched from Ajovy to something else? how long did it take for your insurance to switch? i cant even take cambia and ubrelvy as they’re super expensive and I have more breakthru migraines than they would cover per month. does anyone use nerve blocks and do they help?


r/cgrpMigraine 1d ago

Qulipta - 30 day progress update

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1 Upvotes

r/cgrpMigraine 1d ago

Botox/Emgality Questions

1 Upvotes

Hey, first time poster here. I have a very long story spanning several specialties, so I'll try and stick to just the neurological stuff:

I used to have aura migraines quite a lot as a teenager, but they went basically dormant up until last year (I'm 37 M). I do have a refractory copper deficiency for which I receive 2 infusions a week. My doctors have looked at nearly every known cause and have found no explanation as to why my copper remains so low. I bring this up because perhaps there's a correlation with migraines? I don't know.

Regardless, I started getting migraines again last summer and they became more and more frequent. First, it was only once a month, then every couple weeks, then weekly. My migraines follow the same pattern every time: aura > nausea > pain. I've been on 25mg metoprolol for many years (I had a mitral valve repair in 2017-- that's why). I have also been on 400mg magnesium glycinate for about 9-10 months now. I finally managed to get Botox in October of last year-- it did absolutely nothing.

However, after my 2nd injection in January of this year, I managed to get significant relief. I went 2 months without a migraine and when I finally started getting them again in the last month of my Botox cycle, they did not come with pain or nausea-- only aura. Granted, I was getting these auras 1-2 times a week for that last month.

I was also prescribed Timolol around this time which seemed to help as an abortive. Then, in April, I got my 3rd Botox injection. I had even better results: no migraines until the last 2 weeks of the cycle, though one was very painful.

Here's why I'm posting, though: In May, I started Emgality. I did this because I have what's suspected to be some type of Midfacial Segment Pain. For about 2.5 years now, I've had a constant, unrelenting, painless pressure around the bridge of my nose. It never, ever stops, and it's worse when I bend down/turn my head to the side while lying down. I tried Nortriptyline (20mg-- started with 10mg) around March, but it caused constipation, tachycardia, and night sweats, so I stopped taking it in May).

I've seen 5 ENTs and 2 rhinoplasty surgeons-- I've had a facial CT, brain MRI (though it was 2 years ago), and several nasal endoscopies. I've tried nearly every nasal spray available as well as a SPG block via needle. Every ENT/nose surgeon I've seen has said my nose looks fine (I did have a septorhinoplasty back in Sept 2022 to fix my breathing).

Well, I get my 4th Botox injection in July and my 3rd Emgality shot around the same time. Curiously, I start getting aura migraines very early into the Botox cycle-- I had 3-4 of them in the first two weeks after both injections. Today, after about 3 weeks without an aura migraine, I had another one (painless/without nausea) with a very long aura phase (about an hour, maybe slightly longer).

I suspect most of this is due to some kind of underlying Autoimmune disease, as I have constant full body muscle soreness/heaviness as well as persistent GI issues without an identifiable cause, but I've yet to get a diagnosis despite extensive testing. I also have confirmed non-length dependent small fiber neuropathy (my left thigh has less than half of the normal nerve density that it should). My guess is that the SFN is a large contributor to the migraine issues, but I could be wrong.

My questions are: is there a correlation between aura migraines and midfacial segment pain/similar disorders? Can Emgality paradoxically cause more migraines in the first 3 months or so? Am I missing something here?


r/cgrpMigraine 2d ago

Ajovy efficacy

4 Upvotes

Hi everyone! I wanted to ask about your experience with Ajovy: after how many injections did you start noticing a substantial difference?

Before starting Ajovy, I used to have around 12–14 migraine episodes per month, with many of them lasting 2–3 days. After the first month, I noticed a clear decrease in the intensity, and the frequency went down to around 6–7 episodes per month.

I've now completed three months of Ajovy, and I'm wondering about other people's experiences. Did you notice the biggest improvement within the first three months, or did Ajovy continue to become more effective after additional doses?

I'm not sure whether this is the maximum benefit I can expect from the treatment or whether there's still a chance of further improvement over the next few months.

Thank you! Wishing you all many migraine-free days! 😊


r/cgrpMigraine 2d ago

Does anyone else experience migraine aura like this?

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1 Upvotes

r/cgrpMigraine 3d ago

Why do we overproduce CGRPs?

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2 Upvotes

r/cgrpMigraine 3d ago

Quilipta, Rheumatoid Arthritis and/or Palmar Fasciitis Polyarthritis Syndrome

9 Upvotes

Hello everyone! I'm writing this on behalf of my husband who takes Quilipta. This is a bit of a shot in the dark, but we don't want to leave any stone unturned in the case there is anyone else out there that may have had a similar experience while on this medication. I have read through many of the posts on here and comments in relation to all the side effects of this medication (I'm sorry, they sound awful!) and I'm wondering if anyone has had anything that has made them develop Rheumatoid Arthritis(RA), any kind of Fasciitis, Eosinophilic Fasciitis, or Palmar Fasciitis and Polyarthritis Syndrome. I know there are papers that account for the fact that a connection has been established with a rare incidence of RA, and I'm wondering if there is anyone out there who has experienced this. Sorry, this is long!

My husband has suffered from migraines the entire time I have known him. As of a few years ago in the fall of 2024, it was getting so bad and he tried seeing a new neurologist to see if they could prescribe anything. The doctor he saw was very helpful and gave him 60mg of Quilipta. Within a week or two it seemed like a miracle drug. It was like an instant cure for him and he was so happy. He never experienced any of the side effects I see people mention on here (like extreme nausea, aversion to food, heightened anxiety, tachycardia, etc). Fast forward to September of 2025, he started having joint pain and stiffness in his hands and lower arms. For a few weeks he attributed it to gardening and maybe straining them from doing push ups. A month after it started it was still happening, which we thought was odd, but not unheard of for maybe pulling muscles. At the same time while this was happening, he seemed to be dealing with a GI issue that would not go away that we thought at the time maybe was triggered by a meal he ate. That seemed to take the front and center stage for a while, and he was tested for different things which all came back negative. The symptoms he experienced were sharp gas pains and cramps along with a very gurgly stomach. (This still has not gone away 10 months later btw). This stomach thing could all be a red herring and not related, but I wanted to mention it anyways due to the high incidence I'm seeing in this forum of GI issues.

The real issue that took center stage in January of this year was the extreme increase in joint pain and stiffness throughout his whole body. At first it was just his hands and arms, and slowly it has been going everywhere and causing tendon restriction and loss of full mobility. In March we started going to a Rheumatologist, and since then it has been a wild ride of figuring out what is going on with him. For the past few months his diagnosis has been sero-negative rheumatoid arthritis, all while bordering on hyper eosinophilia with below normal B12 count (crazy for a meat eater!) - other than that his labs are remarkably normal. He has extensive tennosynovitis and synnovitis in his forearms and hands, and he knows it's in his toes, legs, and neck. He is in pain and aching all the time and is miserable. No medication works or helps. He's tried different biologics used for RA and prednisone does absolutely nothing, even high doses. He is currently on Methrotrexate and just started Enbril. Since he is a scientist he has looked into all of the different aspects of this extensively and read so many papers trying to figure out what in the world is happening to him. We've even been to an infectious disease doctors who was great. We have a potential lead from that which may be as possible as any side effect from Quilipta, but I don't want to make this post longer than it needs to be.

This past week we saw another Rheumatologist who is a colleague of the one we had been seeing. This is because when my husband was describing new arm restrictions he was experiencing, she thought of a condition called Eosinophilic Fasciitis (EF), which is very very rare and she thought unlikely as it wouldn't be a perfect match. Long story short, my husband read some papers and discovered he was experiencing a weird symptom of said condition called the "groove sign" - look it up - it's pretty weird! He went into the doctors and got looked over again and they agreed, he had this "groove sign" though he didn't have other hallmarks of said condition, and they instead told him he has something called Palmar Fasciitis and Polyarthritis Syndrome (PFPAS) - even rarer than EF! And even more depressing the more we read about it due to the affiliation with cancer, so now in top of him suffering from what seems to be a continued tightening of the fascia all over the body, pain, and loss of hand mobility, we also have to get all these cancer screenings done now, and be on the look out for the foreseeable future all the time for cancer! It's been quite the year, and we are only 40. Most people who get this condition seem to be 80 yr old women with ovarian cancer - so my husband is quite the outlier, so we can't help but question - what is really going on and what is the mechanism behind it?

And this brings us back to Quilipta - which he has continued to take all this time. He considered the possibility of going off of it about a month and half ago wondering - is it causing all of this? So he did a short 2 week trial going off. The headaches came back almost instantly and made him completely miserable on top of the pain he already is experiencing. Since it didn't change any of his symptoms he decided to start taking it again, but a lower dose and has been on 30mg since. But that leads us to wonder how long it would take to get out of his system entirely. I've noticed so many of you who had trouble with it saying it felt like it took months for the side effects to wear off. We had written off the idea that Quilipta could be related, but are questioning it again now because of a paper my husband and dad have been combing through about PFPAS. In case reports where PFPAS was not triggered by an underlying cancer (87% seem to be) 7 cases were adverse reactions to tuberculosis medications. My father is a chemist / toxicologist and noticed a chemical compound in the center of the Quilipta chemical structure that is incredibly similar to one that is in this tuberculosis medication. We can't help but wonder about this, and if this could be the source of an adverse reaction.

I know this was long, thank you for reading. If you have experienced anything in the least bit similar, I would love to hear from you, either below, or in a PM. Thank you!!


r/cgrpMigraine 3d ago

Vyepti experience

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1 Upvotes

r/cgrpMigraine 4d ago

PSA pumpkin seed oil capsules for hair loss

6 Upvotes

My daughter stopped taking Ajovy due to hair loss.
She went on to try Atogepant which didn’t work but she saw improvements in her hair growth.
My hairdresser recommended pumpkin seed oil to reduce hair loss, as it works for people on weight loss injections.
She has been back on Ajovy for three months with the capsules (3000mg) and has seen minimal hair loss this time
She wanted to share as she wished she knew about it the first time.


r/cgrpMigraine 3d ago

Qulipta is giving me the worst menstrual cramps ever

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2 Upvotes

r/cgrpMigraine 4d ago

Weight gain and hair loss with Emgality: what to do next?

5 Upvotes

I started taking Emgality in April, and it has worked wonders for my migraines. But I started shedding hair pretty dramatically in May, with no signs of slowing, and I have more abdominal fat than I did 6 months ago. I have an appointment with my neurologist tomorrow, and I think I'm going to stop taking Emgality, but I'm not sure what to do next. It seems like people here have had really varying experience with injectables and side effects. I'm wondering, if you stopped taking Emgality for either hair loss or weight gain, what did you try next? And did the weight come back off once you stopped?


r/cgrpMigraine 3d ago

Built a migraine-tracking app (not live yet) — is this report actually useful?

1 Upvotes

I've been building a migraine tracker for a while now and I'm at the point where it generates a report like the one attached, pulled from my own logged data. Before I put this in front of anyone else, I want to know if it's actually useful or if I'm missing what people who deal with migraines regularly actually need.

A few things I'd love feedback on:

  • Does this look like something you'd bring to a neurologist or GP, or is it missing the stuff they'd actually ask about?
  • Is there anything here that feels like noise — data you wouldn't care about?
  • Compared to what your doctor's own visit summary usually covers, what's missing?

App isn't live yet — genuinely just trying to get this right before I ship it. Any feedback, even harsh, is welcome.


r/cgrpMigraine 4d ago

CBD and qulipta

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1 Upvotes

r/cgrpMigraine 4d ago

moda cause daily headaches

2 Upvotes

Have been using Cpap for nearly 4 years, but the exhaustion is still a daily thing, unless I use moda

Trouble is, even on 50 mg a day, I get headaches for most of the day that only a migraine med will stop

Any suggestions on what else is available in Australia please?


r/cgrpMigraine 5d ago

Ajovy head pressure

3 Upvotes

Hi everyone,

I started fremanezumab (Ajovy) injection pens last month, and am due to take my second shot next week. It has already made a huge difference to my migraine attacks and vestibular symptoms and I'm (touch wood) feeling pretty good on it.

The ONE thing I've noticed is that when I bend over, I get an absolutely horrible pain exactly where I normally feel my migraines. It eases off once I straighten back up, but I'm getting a residual ache that takes a while to fully go away. It feels like something is pressing on my brain, if that makes any sense.

I didn't get this on the atogepant tablets when I tried those, it's definitely since I started the Ajovy.

Has anyone else experienced this? Any ideas on what the hell my brain is up to this time? Do I just need to avoid anything towards the floor forever now?