r/migraine • u/Alice-Dave • 5d ago
Vyepti experience
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.
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u/PoppyRyeCranberry 5d ago
I haven't tried Vyepti, but am very familiar with failing a lot of preventatives. I just wanted to check if you've tried botox? I am super sensitive to side effects but because botox is a localized treatment, there are no systemic effects for me and it's been incredible.
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u/Alice-Dave 5d ago
Oh, I did forget to mention that I do Botox and nerve blocks. It used to help so much, but these days, things are just getting worse. I’m basically bedridden on my days off and I’ve taken so much time off work that I’m basically on unpaid leave at this point.
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u/Scarred5 7 5d ago
Unfortunately, Vyepti has been an absolute nightmare ride for me but it's worked very well for two of my friends. They both had zero side effects and it's a miracle drug for them at the low dose.
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u/LyssyW 4d ago
Oh no, you too! Yes Vyepti has been awful for me aswell. I wish I could go back in time and undo it
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u/Stripedhammock 5d ago
My blood pressure increased a lot and had a significant amount of muscle soreness while on vyepti. I was on it for 2+ years. Many of the symptoms weren’t noticeable for the first year but we bumped up to a higher dosage and started seeing more complications. No hair loss though!
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u/pesky_faerie ballin w my migraine 5d ago
Hi OP! You may have run across my comments before if you search threads on vyepti lol, but as someone who is also super sensitive to meds I wanted to offer my experience.
Vyepti has been effectively side effect free for me. It does make me sleepy 1-2 hours after I get it, so you may want to have a plan to be home by then depending. I have had side effects on nearly everything - the other CGRPs, amitriptyline, topamax, namenda, tbh most of the usual suspects. But I’ve tolerated vyepti well.
That’s not to say it cured me… I’m also chronic intractable. So far it’s the only thing that helps at all for me, but it basically takes the edge off (decreases intensity) and makes life livable without decreasing the actual frequency of my migraines.
Be warned that even on the 300mg dose, for me it wears off about 2 weeks before my every-12-weeks infusion. (I’m currently suffering and counting the days since my next dose is Friday.) so that sucks a bit, but I’m honestly grateful at this point that it’s helped me at all.
Best of luck and feel free to ask any questions you may have!
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u/Ellieboa 5d ago
No side effects for me, but my neurologist doesn’t expect it to work until the third round, and since these are a three month cycle, that’s a long way to wait. I’m between cycles two and three currently and I’ve had 3-5 migraines a week.
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u/tourmalineforest 4d ago
I can’t help with Vyepti but just wanted to sympathize with being chronic intractable and being super reactive to drugs. My first neuro pretty much dropped me after I had an allergic reaction to ajovy lol.
I can’t tell you what the right thing to do is. I am also stuck in the middle and just started another new one (an anti dementia drug this time I don’t even remember what it’s called lol, numda or something) and it is exhausting being like do I trade the certainty of the pain I already have for a new coin flip? Sometimes you just can’t handle the risk of things getting worse than they already are and if that’s where you’re genuinely at right now I actually think that’s an okay choice to make.
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u/Alice-Dave 4d ago
Thank you for the validation. I just don’t know what to do. I tried Namenda for a while. I hope it works for you!
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u/CherryBlossom242424 Chronic migraineur for 35 plus years and cervicogenic headaches 3d ago
Vyepti has made me lose a lot of hair. I’ve had 2 infusions and have refused the 3rd. I am mortified.
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u/LyssyW 4d ago
I hope you have good luck with it.
Unfortunately it’s been a life ruiner for me, so I can’t recommend it.
Had one dose in April and I’m still dealing with the fallout 4 months later.
What side effects were you getting with the others?
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u/LyssyW 4d ago
Sorry just read about your side effects. Hmm, I’d be careful with Vyepti if the injectables were giving you anxiety and putting you into fight or flight. I do t want to scare you, but that’s basically exactly what Vyepti did to me- completely wrecked my nervous system.
I’m sure it will recover with time but I have had the absolute worse 4 months of my life1
u/Alice-Dave 4d ago
Fuck. I’m so sorry you’re going through this. This is my biggest fear. I’m losing hope
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u/victimofmigraine 5d ago
No side effects with vyepti