Has anyone tried Vyepti infusions for migraines?

Posted by richardfrancine @richardfrancine, Mar 22, 2024

Has anyone tried Vyepti infusions for migraines? If so, if this therapy gave you relief, how many treatments did you need before getting relief? Does anyone know after how many unsuccessful attempts one should stop trying? In other words, what is the longest period of time it could take for Vyepti to work? Thank you for your feedback!

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Profile picture for jfn @jfn

Hi @caosborn ,
Have you seen a true cranial sacral physical therapist. Not just a pt that does CST? My TGN has been under control for the last 10 years thanks to a great practioner. My migraines are not as bad, the triggers for both do not go away, however my TGN does not control my life anymore, it fades after a trigger (mostly, there are just bad days), and I know I can see my CST if I am not recovering. I also take Baclofen daily. As for the migraines, Nurtec, worked wonders while on chemotherapy, after allergy issues. .. I have done PT and CST for the migraines too. Oddly enough, my first migraine occured when I was 8, too.
JFN

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I live in a rural area and a true CST would be 2-3 hours away for me.

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Profile picture for szucker99 @szucker99

I still have some hidden under the sink! shhhhhh

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Hahaha. Good for you! Your secret is safe with me!

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Profile picture for caosborn @caosborn

I live in a rural area and a true CST would be 2-3 hours away for me.

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Hi @caosborn
It is a minimum of 2 hours that I travel to see my CST, without traffic. I went yesterday, I feel so much better today! I leave 3 .5 hours for my 100 mile drive for most of my doctors. I have one doctor that is a 4 minute walk, not thrilled with tje doctor but with the other commutes....

JFN

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I have had several Vyept infusions it started working after several weeks. However, after 3 weeks it still was improving. What bad is you need a Break Through medication Nurtec for the headaches that are so bad the Vyept cannot stop. So it possible to just take Nurtec or Ubrelvy but you be taking those everyday. It is just not a one medication it's two depending you having migraines Chronic or Episodic. If you have Episodic the Nurtec should be fine without the Vyept. Both medications are very expensive. One nice thing is Abbvie has a myAbbVie Assist provides free AbbVie medicine to qualifying patients free. Phyzer on the other hand is not so generous and there patent assist will not have anyone that gets government health insurance, that military, medicare ect.

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Profile picture for richardfrancine @richardfrancine

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

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It took several week Ubrelvy to work Nurtec worked rightway. Vyepti worked for me after several weeks. That being said you have to follow food restrictions, start salting your food more.
Chiropractors, beta blockers, triptans, and acupuncture are a waste of time. You should if not you should see a Migraine specialist.

There are plenty of foods, fake sugars, nuts ects I cannot eat or drink.

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Profile picture for richardfrancine @richardfrancine

Hi there! I sympathize so much with you. I also had my first migraine at the age of 8. It was so bad I remember it to this day (and I’m 77). I was sitting in class with tears streaming down my face - that was the first day of the rest of my life. I too tried every medication in the book, without success. You did not mention trying CGRP antagonists. Perhaps you could read up on this if you haven’t already tried them. They did not work for me. Perhaps one of them would for you! Take care. I wish you relief!

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Thank you. Yes, I have tried them all. Even over 1 year of IV infusion vyepti. Sorry about your migraines. We have to stay strong to not let them totally guide our lives.

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Has anyone had infusions of Vyepti quarterly? If so, what was the result?

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Hello @susanfalcon52, I combined your discussion with an existing discussion titled, "VYEPTI FOR MIGRAINES" - https://connect.mayoclinic.org/discussion/vyepti-for-migraines/ so you could meet other members talking about this medication for migraine relief.

@stlandrypt and @je16384 recently discussed whether Vyepti worked for them and may be able to share their experience with you some more.

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Profile picture for briarrose @briarrose

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

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Hi, I'm sorry to hear about your experience with chronic migraines. I have the same issue at age 65. I used to have normal migrains working in collection call center for 18 years. When I retired 2018. Migrains went away for 6 months. In 2019, I went out of state to see family. I was on the plane & helped drive to go ro another state. I came down with bad flu virus h3n2 flu. It weakened me. Left me with light headedness. Came home it took me 6 months to work up to 90 min in the gym which I did slowly. Got my energy back. Still have tightness which became worse 1 year later It wrapped around my head down my neck to my toes with tightness with auras. 2 years later I had elevation migrains 2021 then 2023 I experienced episodic attack where I was not able to push 8 lb vac. I was on nurtec at the time but broke out. Neurologist took me off. I went on qulipta. It helps with episodic not with tightness. But I can vacuum the upstairs & downstairs & steps instead of sections. I have problems with side affects & sensitivity too. My doctor was pushing botox. I said no because the very toxic toxins ca. Spread to other parts of your body & cause mucle weakness, thete are studies that say it does not go away when you are taken off. She told me yes it can do that. I said I have a dog to take care of & sensitivity, i dont need mucle weakness. The. She was trying for me to go on vyepti, she feels it will help tightness in higher dosage. I asked if I could remain on qulipta bec of episodic. She said insurance would not cover both meds. But there is a new triptan you can take as rescue medicine only when you need it while on vyepti. I said everything I look up tightness it's for botox & triptans. I had issues with Riza triptans so I am reluctant to do vyepti. So I said, no I am going to stock with osteopath & qulipta. They were able to take tightness from the back of my neck , remove tightness from my chest & reduce tightness in my toes. The numbness tingly sensations throughout my body has gone away. But I still have tightness in my head. I see a new osteopath in October. I wa t to see how he can help me. She said, ok let me know when you want to go on vyepti. She did say she still wanted me to see osteopath. Told me it depends on your body if it completely takes it away. She is not sure. I wished there would be stem cell studies for my group. I was put into new daily persistent headaches with or without auras. I was told flu virus & covid virus can put you into this mode. I am anxious to be normal again. But fear how much longer my body will hold up with all this tightness it can affect other organs. I did research on stem cell is good for inflamation Luke RA. I dont have RA just mild osteo arthritis. I think this could help my tightness which is inflamation. Just wished they would approve these studies through FDA or have more studies on these types of migrains. So I can be normal again. Seems like osteopath is working more for me than the drugs. Nothing has helped except qulipta for episodic. I will pray for everyone having chronic migrains. They are no joke. Never knew until now how bad migrains can get & lead to other stuff. Thanks for sharing.

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Profile picture for richardfrancine @richardfrancine

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

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Have you tried Emgality? I was the same as you, nothing ever worked unless I had a klonipin drip at the hospital. Started emaglity in March. It does take 3 months to really take effect, but a SIGNIFICANT change in the frequency and intensity of my migraines. 42 yrs old, diagnosed at 15 yrs old.

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