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
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!!
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!
For those who experience chronic migraine, what has your journey been like?
Share your experiences below. Your story may help others feel less alone.
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! 😊
Has anyone researched or talked with a doctor about why we overproduce CGRPs and what, if anything, helps that not happen (besides this class of meds, which I love lol)?
I've had a status migraine for 4 months straight and ajovy, nurtec, qulipta and steroids help halve the pain for a few days then it comes back bad. I know part of it is just the more the nerves get sensitized the more you get a migraine and it's a huge cycle, but the WHY of it all is driving me nuts.
I'm also trying mag, b2, PT, acupuncture, memamtine etc but like whyyy 🙃 I have MANY other chronic illnesses - post EBV RA, Endo, PCOS/IR, EDS, mysteriously high RBC and WBC, H-EDS, waiting to get my hyperkinetic gallbladder removed, and I can't help but wonder if they're related at all. Just curious if anyone else has figured out anything or if there's research on this.
I’m wondering if anyone else experiences migraine with aura the way I do. Mine normally begins with a visual change, like a spot or distortion in one eye where I cannot see normally. After that, my lips and part of my face may go numb, followed by numbness in the fingers on my left hand. Then I can feel the headache beginning.
This has been happening around my menstrual cycle and seems to be getting worse. I’ve needed a migraine cocktail at the hospital multiple times within the past few months. I was using the Xulane birth-control patch for years, but I recently learned that estrogen-containing birth control is not recommended for people who experience visual aura, so I removed it and contacted my provider about switching to an estrogen-free pill.
Does anyone else experience visual disturbances followed by facial, lip, or finger numbness? Have your migraines improved after stopping estrogen-containing birth control or switching to a progestin-only pill?
Oh Hey, it’s me again. The girl who has lost her life to chronic intractable migraine.
So I’m in the process of trying to get approved for Vyepti. I’ve failed all the other CGRPs and gepants- mainly because I’m a delicate fucking flower and can’t handle the side effects (I’m just sensitive to meds, what can I say). Qulipta and Nurtec gave me terrible reflux and the constipation was ungodly. The injectables sent me into fight or flight mode anxiety wise and increased my appetite such that at one point I gained 10lbs in one month (I could never get full). Oh, and did I mention the constipation?
I’m starting monthly lidocaine infusions which I’ve heard can be helpful but my neurologist is thinking we should try Vyepti too. And to be honest, I’m terrified. I can’t afford to gain more weight and I really don’t want to go bald (side effects I’ve heard of). Has anyone who is SENSITIVE to medications had a positive experience? I just need some hope right now.
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!!
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?
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:
App isn't live yet — genuinely just trying to get this right before I ship it. Any feedback, even harsh, is welcome.
I’ve (F36) been on Qulipta for about 6 months now, on the lowest dose. It’s been a godsend, went from 20-25 migraines a month to 1-2. However, I’ve noticed some changes in my menstrual cycle, chief among them: PAINFUL cramps! And I mean painful-painful. Take this weekend for example, I’m due to get my period in 4-5 days, and since yesterday, I’ve been experiencing a pain I’ve only ever felt once, when an ovarian cyst ruptured and I was rushed into the ER. 😩 I can barely move, sit, get up, bend down without severe pain shooting all around my abdomen and lower back. What is this sorcery?? Is it the price to pay for having less migraines? Has anybody else experienced this?
Hi, I’ve been taking ubrelvy as a rescue med and it works great other than some GI side effects if I take more than 200mg in a week. I want to try Nurtec or qulipta as a daily preventative, but my dr insists on me trialing propranolol XR first. I am already on 20mg daily propranalol for POTS and have some side effects, and it has not done much for headaches, so I don’t know if this will help me? Just wondering if you had to trial other preventatives before qulipta? I am also already on nortriptyline.
This bubbles have been there for more than hour now. And it’s not on the outside, i tried wiping it.
i was grabbing hot takeout and absent mindedly had the takeout on top of my injection heating it up for about 30 minutes, it feels pretty warm and even hot to the touch and the injection is wet from condensation, is it ok to inject it now? this just happened and i’m already late on my dose so thinking of just injecting it anyway... I’m so stupid because i’m having a migraine rn, help 😭
If you stopped injections, how long after your last dose did it take to notice shedding had stopped? How long for regrowth?
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?
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?
I got prescription and bought it around 2 weeks ago. I'm so afraid to inject it.
I'm having status migrainosus since June 26th and I honestly at lost, ny neurologist said it might help with this attack.
Anyone has any tips? I saw and heard from too many people it hurts really bad so I'm scared, but I gotta do this
Hi everyone, I’ve been on 50mg of topamax for about 31 days, I have had HORRIBLE side effects, thoughts of SH so I messaged my doctor because I physically couldn’t handle it anymore (on topamax for migraines) my neurologist said because of my symptoms I’m able to just cold turkey and stop taking it. I’ve been reading everywhere that it’s not safe to do that, has anyone else abruptly stopped and was fine? It’s making me nervous, I’ve never had seizures or anything before
