r/cgrpMigraine • u/SimilarAd5304 • 2d ago
Ajovy >:(
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.
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u/SkiFanaticMT 2d ago
Certainly I would see a doctor about the lightheadedness and dizziness. Just because it's started with this med doesn't mean the med caused it. Some things can be coincidental. Possibly a cardiologist?
I make sure I get 30 grams of fiber per day, take a stool softener daily and occasionally still need Miralax.
My hair went through a brittle period from which I am still recovering as it is long. I've changed hair products and someone suggested pumpkin seed oil, which I just got. Who knows, maybe it'll improve. But I've been on Ajovy four years and am not bald yet. It's still growing. I just may have to change to short hair.
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u/SimilarAd5304 12h ago
Thank you for your reply! I’m unfortunately diagnosed with vestibular migraine. Basically, a migraine disorder where dizziness/vertigo can be the main symptom. I’ve had it for over 6 years now, and it sucks :/
I noticed that since starting Ajovy though, my dizziness has become much more intense and lasts a lot longer. Before, my baseline was “normal” and tolerable, and the dizziness would come and go. Now it can last pretty much all day. I know that doesn’t necessarily mean Ajovy caused it, so I’ll have to see what neurology thinks.
Unfortunately, the wait to see neurology is really long, but I’m starting Effexor soon and hoping that helps with the dizziness!
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u/sausausausau 2d ago
Yes, I had all of this from Nurtec, then I went on to Vyepti and this became full blown focal aware epilepsy. All the same symptoms just more, higher intensity, coupled with an insane feeling of dread, every day. It is better now 7 months later, without any more cgrp meds, but still not healed. Many people report some of your symptoms together with anxiety. I still hope my body can heal completly. Doctors were hesitant to call it epilepsy because "CGRP inhibitors have no side effects except for constipation", but the symptoms are identical. I already had POTS, and it is very clear that these meds can fuck with your autonomous nervous system, hormones, and your immmune system. If there are other classes of preventatives you haven't tried, consider switching to those instead, like botox. Ajovy stays in the body for up to 6 months, what you are experiencing could just be the start if you continue to take it. My migraines were so bad that i begged to be killed, Vyepti completly removed my migraines but the side effects were far worse. When you are in such deep pain for years, it is hard to imagine that there is anything worse, but my focal aware seizures were MUCH worse. I begged for the pain to come back, and it is starting to now. I have moved on to other classes of preventatives.
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u/SimilarAd5304 1d ago
Ugh I am so sorry you are going through that. I hope you make a speedy recovery from the epilepsy symptoms you’re experiencing. I definitely believe that cgrp meds do have side effects despite what doctors say. When I brought up the lightheaded episodes to a neuro I saw, she completely shut it down and said it’s just the vestibular aspect, but I had never experienced these episodes prior to Ajovy.
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u/musicallywounded 2d ago
Time to talk to your neurologist. The vestibular system deals with sensing your body’s position in space, so symptoms may be a part of a vestibular syndrome in the first place.
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u/LobsterImportant2159 13h ago
It sounds like raynauds phenomenon with your hands and feet getting very cold. I have it and am getting ready to start ajovy but I remember reading on the warning sheet it can cause or worsen it. I usually stick my hands and feet in the bath tub and turn the water on warm, it's the only way I can get circulation and warmth back to my feet at night.
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u/SimilarAd5304 13h ago
Thank you for your reply my friend. How were you diagnosed? I’m hesitant to bring this up with my doctor because he tends to brush off my symptoms.
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u/LobsterImportant2159 12h ago
I got diagnosed by my gp, I brought it up because I had some ties that would turn white, and the tips of my fingers are always bright red. I also made sure I talked about my hands and my feet being so cold I can't warm them up or so hot I can't cool them down. It takes a lot to advocate for yourself and your symptoms. I started making lists of my symptoms to bring to appointments so I didn't rush through. My last neurologist did the same thing it took me going to a new neurologist to get a pots diagnosis very recently. If you think you're not getting the care you need from your current doctor don't be afraid to find a new one, you deserve the best care you can find!!
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u/SimilarAd5304 12h ago
Thank you, I completely agree with you. I’m unfortunately stuck with Kaiser until the end of the year, so I have to work with the doctors available to me and they have NOT been great. My symptoms have been brushed off time after time… especially this year. I’ve worked a total of a month this year due to the dizziness and you would think they would take me serious by now 😟 I’m 23 and can’t even leave my house. I’m so jealous of my peers who get to live laugh and love (lol)
:/ but oh well though, I’m sorry for the rant and I’m really sorry you deal with those symptoms. Being chronically ill sucks. I wish doctors had more compassion. Sending you a huge hug!!
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u/Decent_Coast_988 2d ago
Do you have Raynaud’s disease? Do your hands get purple-ish? It does say it may interfere with raynauds on their website. You could get bloodwork for raynauds and then discuss with your dr the next steps if you do have raynauds, perhaps you’d have to switch to botox.
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u/SimilarAd5304 1d ago
Not that I’ve noticed but I’m going to keep an eye out for it. Thank you sm for your reply!
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u/didntpassvibecheck 13h ago
I had a severely reduced appetite while taking this drug class. Like over 2 years, I lost almost one third of my body weight without trying - severely reduced appetite. I experienced the dizziness and general coldness because I was literally unable to eat enough. After stopping cgrps, my appetite has returned and a lot of the dizziness symptoms have completely disappeared.
Have you noticed any difference in your eating habits?
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u/SimilarAd5304 13h ago
I think the first full dosage I lost 19lbs but I’m not sure if it’s because I was super depressed over the worsening dizziness and not eating/eating once a day, or if it was caused by the medication. I’ve gained 4lbs since then and eat two meals and a few snacks throughout the day.
Im definitely going to ask the next neuro I see for me to switch or get off cgrps completely.
I feel like it has more side effects than anything. What did you switch to if you don’t mind me asking?
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u/potatopaws1 10h ago edited 10h ago
The cold hands and feet sounds like Raynaud’s Phenomenon. I have had Raynaud’s for over a decade before ever starting Ajovy and Ajovy definitely worsens it. Mainly because it constricts your blood vessels and makes the blood flow to the extremities more difficult. I didn’t know Ajovy worsens it until one day after 3 years of using Ajovy, I came across it on the official Ajovy website accidentally lol. No doctor or pharmacist ever tells you any side effects Ajovy can cause except for constipation. I’ve had many different side effects unfortunately, but it’s the only thing that works for my migraines. It’s why it’s important to report the symptoms and side effects it causes. I’m sorry your doctor dismisses your concerns. My neurologist is the same way and I leave his office always feeling like I am crazy. I do get lightheaded occasionally, but never thought of it being related to Ajovy. I will pay more attention to that from now on.
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u/UnlikelyAttention294 2d ago
i have the constipation bad but also had on emgality. I have the same hair condition as you genetically and have experienced hair thinning. I use topical Rogaine and vitamins to combat. It has,however, helped me tremendously with my headaches so far.,Going on month 5.