VYEPTI FOR MIGRAINES

Hi @richardfrancine, I'd like to invite @caosborn, @brooklyn385, @briarrose, and @cl24 to this discussion to share their experiences with VYEPTI. They have had mixed results but could perhaps speak to what else they have tried and how they are doing now.

@richardfrancine, have you started this medication yet or is this something that has been suggested to you? What other coping measures have you tried to manage your migraines?

Thank you for reaching out. I have tried everything in the book - chiropractors, beta blockers, triptans, acupuncture, Botox, CGRP antagonists ( Aemovig, Mgality, Ubrelvy) and now I just had my fourth infusion of Vyepti. The first three made no difference in either the frequency or intensity. Thank you for any feedback. Francine

I have not tried Vyepti as of yet. A little "concerned" since it is IV and so invasive...plus I am sensitive to any new medications. But having said that - it very well might be my next "go-to" in my awful migraine journey.
Since I have heart disease I can not use any of the triptans. A bummer for sure since I believe this class of drugs are the 1st line of defense in migraine control & most effective.
So only CGRPs for me.
I have tried Ubrevly, Emgality (for prevention, worked for about 3 months), Nurtec (prevention and abort) and Qulipta for prevention. All the CGRPs cause constipation but Qulipta brought it to a new level and I had to stop it for this reason. Bottom line - none of them really gave me complete relief...perhaps "a little" but nothing outstanding. Botox has been suggested to me but I have a fear of my face becoming "paralyzed" from it...perhaps unreasonable but that's me.
Reyvow also suggested but it can raise blood pressure so it might not be for me. Would be interested if anyone tried it. My neurologist is now saying I have "refractory" migraines. Great.
Never had them until a concussion in 2019 and a thunderclap headache in 2020. I am 69 years old and a retired RN. I did purchase a neuromodulating device - Nerivio for prevention and abort. I believe it was effective for about 5 months in reducing the # of migraines per month. But then I got lazy and stopped using it 3x week as recommended. I must go back to it again...it's a 45 minute treatment - maybe that's why I stopped. I didn't feel like sitting that long with it. But like everything I tried, eventually it was not that effective. Acupuncture didn't work for me. And I am already on a beta blocker for my heart condition. Topamax gave me massive brain fog to the point I couldn't even function. I would "forget" what I was doing and why.
So what do I do with my migraines? I have my migraine ice cap which does help...my migraine indoor sunglasses to cut down on glare. And always a nap. Stress is my # 1 trigger so I try to meditate. I also go to the spa monthly for "headache massages". Expensive for sure but I consider this a "medical" procedure. I have walked into the spa with a brewing migraine and by the time my massage therapist is done - the migraine is alleviated. I also do guided imagery and listen to relaxation CD tapes for stress management. My CD player is 25+ years old 🙂
And, I believe a biggie - I do chair yoga (can't get up off the floor)...again, I can have a migraine in progress and after my session, it is gone. So that's my story. I wouldn't wish migraines on my worst enemy if I had one. And such a stigma attached to migraines. Most people think you are "just" having a headache. They don't understand migraine is a neurological health condition.
And frankly I have come across some folks who think you are being "dramatic" when you say "I can't do that, I am having a migraine right now".
As Francine said - thank you for any feedback. briarrose

@richardfrancine Hey there, I'm sorry about your migraine troubles. It's exhausting trying so many different meds and inevitably discouraging when they don't work . Managing migraines is like other chronic conditions, very much trial and error and possibly a crap shoot. Everyone responds differently to different treatments but I can say that I have tried Vyepti medication in addition to all the others you mentioned and like you did not receive much help. I even tried a powdered abortive medication to be taken upon an onset. In all honesty I think any relief I ever received was placebo but again that's me some things do work for people.

Do you mind sharing a little bit more about your journey with migraine headaches? Outside of medication treatments, may I ask what sort of lifestyle changes you have implemented or changed, such as stress management or diet?

Lately I've been getting bad headaches migraines I have been on Toka mats for quite a while by 25 mg three times or 75 mg. I go to the chiropractor too and I use the ice cap too I've been getting the more frequently I am think and I think it's sometimes my TMG to my TMJ that's been causing them too I'm not sure but I'm guessing that's triggering because I have a joint my joints in my jaws are out of place and they say 4 years ago I knew about 5 years ago I needed to get a joint replacement in my jaw but I have not done that yet I'm a little scared about that cuz of my other health issues like because of my heart issues and my does a neutropenic too. And my heart doctor says I'm very I don't take honest I can't go under anesthesia that long because my blood pressure drops really low. And I had an added some disease to but I know my team because of my job cuz he's really bad my voice and I will receive my neurology doctor in about 3 weeks then I'll probably be talking Tom about my migraines I've never heard of that medicine but you might I know in the past is talk to me about Botox I might try that if that's an option. Migraines are the worst and people think I could exasperate about my migraines but I know they are real and they're no joke.

Thanks for reaching out. May I ask you how many Vyepti infusions did you get? I think I will give up on it. To answer your question on any lifestyle/diet changes, I can’t say that I have made any. I lead a pretty stress-free life and, as for diet, I have not yet managed to put my finger on any culprit foods. Thank you for taking the time to write and I wish you all the best!
Francine

It was a while back, maybe about 3-4. I think my neurologist always said that it took at least 2 or more doses to give full effect.

Thank you, take care

Didn't help me. I only took one though.

I did it for over a year. Did not help.