It seems like mostly based on lack of data and insurance limiting monthly amounts. However, my neuro just told me not to stress if I need it a few days in a row but be careful just so you don’t run out at the end of the month.
I took every other day as a preventative protocol along with my Nortriptyline and it was making me really queasy. And, it wasn't really working My neurologist recommended Botox and that has been working so much better. I still take if I sense an impending attack, but down to 2-3 a month. what I've found with Botox is that I get a mini-headache, I take Nurtec and 2 Advil gel caps and most of the time it goes away.
everyones different w migraines- i did botox multiple times and it did jack shit for me. i also have partial seizure and TBI so as you can see, every pt is different and what works for one may not for another. nurtec works like hot cakes for me. botox was an unecessary pain in my ass and forehead, and neck.
I think it’s because there are other drugs that can cause rebound headaches if overused (triptans, etc) so they just apply that logic to cgrps. Also they don’t want to pay for them.
For a long time I was prescribed it every day and took it but was still having migraines so my neurologist added in the Emgality injection once a month (which did not work at all)! I switched to Botox and just got my 3rd injection and it’s been a lifesaver! I still take the Nurtec but only a few times a month and then more like every other day once I get close to the time for my next Botox injection.
My doctor figured out that, because I had a diminished number of migraines after the loading dose, but not continued relief at the regular dose, it was worth trying an increased regular dose. I went from 100 mg. a month to 300 mg. monthly, and I have fewer migraines. Ironically, that dose is more in line with treatment of cluster headaches.
I had trialed and failed on a laundry list of medications and therapies over the course of 20 years. So she had a large of amount of information with which to say, “If all of these migraine-targeted remedies aren’t working, and this 200 mg dose of Emgality (and initially Ajovy) is the only thing that works as a preventative, then let’s try it. And if you, insurance, say that’s cluster headache protocol, fine - it’s a cluster headache.” And it was a long process, with several attempts at authorization. It took almost a year of relentless pestering.
And the mere fact that the CH treatment works, lends credibility to the fact that maybe I’ve been having a combination of migraines and cluster headaches all this time.
My first few rounds of Botox gave me questionable results, to the point where I thought it wasn’t worth it. I decided to do the fourth round since it was already authorized by BCBS and that’s the one where u noticed a difference. I think a lot of it was my neuro listening to me and doing injections in different areas… like going down the back of my neck. I’ve been doing it now for six years and while it doesn’t make my chronic migraine not chronic, it makes it tolerable for a good chunk of time. Before I would have days where I was able to function and the next day I couldn’t and back and forth. It was interfering with everything and I had my job threatened for being “inconsistent”.
As most of us know, we’ll try anything if it helps. I would snort frog mucus if it helped. I would eat a dozen barnacles every morning to not have a migraine. Instead I eat pills that make me feel like an idiot and inject myself with pharmaceuticals that leave giant welts on my leg and pass on doing anything that might make the migraine worse.
I’m so sorry to hear that! I’m cautiously optimistic but honestly, a little nervous because generally something will work for awhile and then go to hell and stop…
I was in a study for Nurtec about a thousand years ago. I can’t remember if they had me taking it daily or not. I don’t think they did. I’ll try and figure it out and come report back if I can find the info. It was about 6-7 years ago now.
I was prescribed daily nurtec , and took it for about 4-5 months. Did absolutely nothing , no positive or negative effects . Had already been through trials of all other classes of preventatives with no success, so that's possibly why they let me take it daily.
My neuro told me that if I needed a second dose wait a few hours not two possibly 4-6 hours and you should be alright but not more than two in a 24 hour period.
i wouldnt overthink it. its prob a supply and demand issue since lady gaga and the kardashians got their names on it. ive taken it back to back when needed per my neuro and ive had shifts in the OR and needed it and ive had no ill effect / noticed nothing different. everyones different, but i started at the basic triptans and SNRI route and i have seizures so im already on anti epileptics. ended at nurtec and vyepti. nurtec really helps me in particular.
It worked but I moved it back to abortive because there was nothing else for me to take when it was the preventative medicine. Then I went to nortriptyline and that was the worst mistake. The side effects were horrible.
I would maybe get a diff doctor? My mom’s pcp told her to do quilipta and then she couldn’t take any abortives but the gist of this sub is that a lot of people on quilipta can take ubrelvy or nurtec as an abortive or nurtec as a preventative and ubrelvy as an abortive.
I’m not sure why some docs prescribe differently.. my pcp said o can’t take ubrelvy and a tiptan but other people here say their neuro says that’s just fine.
If nurtec worked well but the doc limited abortives, I would try and find a doc that understands you can take both? (Maybe a neuro?)
I see a neuro. I have hemiplegic migraines, so there are a limited amount of drugs I can take. I’m currently on Qulipta and nurtec for abortive. It works about 85% of the time.
Yeah. I recently learned that. The nortriptyline was okay in the beginning but it wouldn’t allow me to sleep. Most of my migraines end at night but without the proper sleep and not being able to stay asleep it was a never ending cycle. I then started having a tremor in my right hand. It was time to get off the meds. After 6 weeks I was able to sleep again.
I’ve seen multiple neurologists, I think some don’t stack the CGRP meds because it hasn’t been studied yet. Others will do it but want to just monitor for side effects
Either during the drug trials they never tested daily use for whatever reason or they did have a group that took it daily as well as one that took it every other day and found either there were safety concerns with daily use or that it wasn’t any more effective at preventing migraines than taking it every other day. Nurtec didn’t work for me past the first week or two and I attributed it partly to the every other day dosing so I switched to Qulipta, which is daily, and have found is way more effective longterm.
There aren’t many studies on daily use, as they don’t really have too many studies past 24 months of use right now. We don’t know what the long term effects are past that on every other day dosing.
I was told not to because I take a lot of medication and my liver no likey. I can take multiple in a day, and I *can* take it a few days in a row, it's just discouraged. I dont know if this is universal, though.
Folks who take it every other day, what insurance are you on? Mine only gives me 8 pills a month, which seems ridiculous in view of the fact that my neuro keeps telling me how safe it is compared to triptans. (I get 9 of those per month.)
Ugh, that is frustrating! Have you tried other preventatives? My insurance required me to try a drug from three different categories: tricyclic antidepressant (amitryptiline), beta blocker (atenolol), anticonvulsant (topamax) - before they would approve Nurtec as a preventative.
Uhmmm… maybe a little TMI.. but does it cause urinary problems for anyone? Like incontinence? But then after like 72hrs things are back to normal? I’ve only taken 2 I’m waiting to see if the 3rd one causes the same problems before I call my neurologist. Since there’s a thread on it I’m leaving my little “issue..”
Had bad side effects with ajovy, was allergic, and most of all it made my migraines worse for MONTHS. Don’t want to try another shot. I think my immune system didn’t like it
It’s because if you take more than 9 migraine meds a month it can trigger rebound migraines which are even more painful and longer lasting. Which I can testify is true 🥹
I’ve read as much as I can find on side effects of Nurtec and they are so shady about what exactly it does to your body and how it works. Near as I can tell is it would likely not be good for other parts of your body to have large amounts of CGRP blocker in your system.
I think it’s way too understudied. The whole idea of CGRP blocking. It’s in LITERALLY every cell and function in our bodies. It may work. But at what cost? I was getting HORRIFIC pain in my liver area. To the point my dr filed a report with the fda. It was some of the worst pain I’ve ever had. And my hair fell out for about three days every time I took a dose, plus terrible nausea/vommiting.
Does it make your hair fall out? I switch from Qulipta to Nurtec because the Qulipta made my hair fall out. I don’t want it to happen on this drug, too. 😞
I noticed that at first; but it went away after a few months. I did develop excema and bacne around the same time I started taking it as a preventative. I’m 38, so that’s a strange time to develop either of those issues and I attribute it to Nurtec. Both of those side effects are mild for me though
Yes I tolerated it so much better too! I’ve been taking it every other day for about a year. It helped more at first (of course) but it definitely still helps. And I really don’t have any bad side effects, which is a miracle for a lot of these damn drugs 😂
Yes it made mine. Every time I’d take one for 3-4 days after my hair would fall out a lot. Just pay attention to your body. I got horrible right sided abdominal pain with it so I did a bunch of research and found out that a minute amount of people had to have necrotic organs removed bc of it. So after that pain started I got off it. I’m starting ubrelvy as soon as my pharmacy fills it.
This is my worry. A lot came out on my brush today. I will definitely pay attention to how I feel. Thank you for sharing and I hope the Ubrelvy is helpful!
Because rebound headaches. Rebound headaches are hell. There is science behind it. It's no different than taking analgesics or opiates. But injections such as Emgality can help.
It seems like mostly based on lack of data and insurance limiting monthly amounts. However, my neuro just told me not to stress if I need it a few days in a row but be careful just so you don’t run out at the end of the month.
Yes I hope they test it for every day. I take it as a preventative but always feel better the days I take it.
Same. Sometimes I take two days in a row. She said it gets out of your system between 12 and 24 hours.
That makes sense!
Yeah I've heard this, seems to be the same with Rizotriptan as well. Which is why i stagger it with Umbrelv
I took every other day as a preventative protocol along with my Nortriptyline and it was making me really queasy. And, it wasn't really working My neurologist recommended Botox and that has been working so much better. I still take if I sense an impending attack, but down to 2-3 a month. what I've found with Botox is that I get a mini-headache, I take Nurtec and 2 Advil gel caps and most of the time it goes away.
everyones different w migraines- i did botox multiple times and it did jack shit for me. i also have partial seizure and TBI so as you can see, every pt is different and what works for one may not for another. nurtec works like hot cakes for me. botox was an unecessary pain in my ass and forehead, and neck.
I think it’s because there are other drugs that can cause rebound headaches if overused (triptans, etc) so they just apply that logic to cgrps. Also they don’t want to pay for them.
For a long time I was prescribed it every day and took it but was still having migraines so my neurologist added in the Emgality injection once a month (which did not work at all)! I switched to Botox and just got my 3rd injection and it’s been a lifesaver! I still take the Nurtec but only a few times a month and then more like every other day once I get close to the time for my next Botox injection.
My doctor figured out that, because I had a diminished number of migraines after the loading dose, but not continued relief at the regular dose, it was worth trying an increased regular dose. I went from 100 mg. a month to 300 mg. monthly, and I have fewer migraines. Ironically, that dose is more in line with treatment of cluster headaches.
How on earth did you get insurance to pay for the 300mg / monthly dose, is my question? Did your doctor just say you have cluster headaches?
I had trialed and failed on a laundry list of medications and therapies over the course of 20 years. So she had a large of amount of information with which to say, “If all of these migraine-targeted remedies aren’t working, and this 200 mg dose of Emgality (and initially Ajovy) is the only thing that works as a preventative, then let’s try it. And if you, insurance, say that’s cluster headache protocol, fine - it’s a cluster headache.” And it was a long process, with several attempts at authorization. It took almost a year of relentless pestering. And the mere fact that the CH treatment works, lends credibility to the fact that maybe I’ve been having a combination of migraines and cluster headaches all this time.
My third round of Botox made me worse! First two helped. What a crapshoot. I don’t think my Botox results are typical
My first few rounds of Botox gave me questionable results, to the point where I thought it wasn’t worth it. I decided to do the fourth round since it was already authorized by BCBS and that’s the one where u noticed a difference. I think a lot of it was my neuro listening to me and doing injections in different areas… like going down the back of my neck. I’ve been doing it now for six years and while it doesn’t make my chronic migraine not chronic, it makes it tolerable for a good chunk of time. Before I would have days where I was able to function and the next day I couldn’t and back and forth. It was interfering with everything and I had my job threatened for being “inconsistent”. As most of us know, we’ll try anything if it helps. I would snort frog mucus if it helped. I would eat a dozen barnacles every morning to not have a migraine. Instead I eat pills that make me feel like an idiot and inject myself with pharmaceuticals that leave giant welts on my leg and pass on doing anything that might make the migraine worse.
You’ve captured the chronic migraine experience quite well!
Botox makes the CM tolerable for a good chunk of time.... my experience also Not a panacea but without I'm so much worse
I’m so sorry to hear that! I’m cautiously optimistic but honestly, a little nervous because generally something will work for awhile and then go to hell and stop…
Pretty much. It’s such a bummer
I thought it was bc that's what the study was based on.
I was in a study for Nurtec about a thousand years ago. I can’t remember if they had me taking it daily or not. I don’t think they did. I’ll try and figure it out and come report back if I can find the info. It was about 6-7 years ago now.
You’re the real hero!
No, I don’t think they studied more than 18 tabs/month. It might be bad for our livers?
Yes, I was in the study for Aimovig and they checked my liver enzymes once a month because they said the oral version caused increased LFTs
You can try another CGRP medication like Aimovig that does essentially the same thing but is designed for prevention and is injected monthly!
You can take it every other day I took it as a preventative for a long time, it didn’t do anything unfortunately qulipta works better
I was prescribed daily nurtec , and took it for about 4-5 months. Did absolutely nothing , no positive or negative effects . Had already been through trials of all other classes of preventatives with no success, so that's possibly why they let me take it daily.
Thanks good to know!
My neuro told me that if I needed a second dose wait a few hours not two possibly 4-6 hours and you should be alright but not more than two in a 24 hour period.
Thanks!
i wouldnt overthink it. its prob a supply and demand issue since lady gaga and the kardashians got their names on it. ive taken it back to back when needed per my neuro and ive had shifts in the OR and needed it and ive had no ill effect / noticed nothing different. everyones different, but i started at the basic triptans and SNRI route and i have seizures so im already on anti epileptics. ended at nurtec and vyepti. nurtec really helps me in particular.
It can be used as a preventative. Maybe ask your neurologist?
Yes I used it as a preventative but I was still only allowed to take it every other day.
Did it not work every other day?
It worked but I moved it back to abortive because there was nothing else for me to take when it was the preventative medicine. Then I went to nortriptyline and that was the worst mistake. The side effects were horrible.
I would maybe get a diff doctor? My mom’s pcp told her to do quilipta and then she couldn’t take any abortives but the gist of this sub is that a lot of people on quilipta can take ubrelvy or nurtec as an abortive or nurtec as a preventative and ubrelvy as an abortive. I’m not sure why some docs prescribe differently.. my pcp said o can’t take ubrelvy and a tiptan but other people here say their neuro says that’s just fine. If nurtec worked well but the doc limited abortives, I would try and find a doc that understands you can take both? (Maybe a neuro?)
I see a neuro. I have hemiplegic migraines, so there are a limited amount of drugs I can take. I’m currently on Qulipta and nurtec for abortive. It works about 85% of the time.
85% might be as good as it gets.
Yeah. I recently learned that. The nortriptyline was okay in the beginning but it wouldn’t allow me to sleep. Most of my migraines end at night but without the proper sleep and not being able to stay asleep it was a never ending cycle. I then started having a tremor in my right hand. It was time to get off the meds. After 6 weeks I was able to sleep again.
I’ve seen multiple neurologists, I think some don’t stack the CGRP meds because it hasn’t been studied yet. Others will do it but want to just monitor for side effects
What was your dose/side effects from Nortriptyline?
Didn’t do anything for me when I took it
I think it’s possible. My scrip says once a day as needed.
Either during the drug trials they never tested daily use for whatever reason or they did have a group that took it daily as well as one that took it every other day and found either there were safety concerns with daily use or that it wasn’t any more effective at preventing migraines than taking it every other day. Nurtec didn’t work for me past the first week or two and I attributed it partly to the every other day dosing so I switched to Qulipta, which is daily, and have found is way more effective longterm.
There aren’t many studies on daily use, as they don’t really have too many studies past 24 months of use right now. We don’t know what the long term effects are past that on every other day dosing.
I was told not to because I take a lot of medication and my liver no likey. I can take multiple in a day, and I *can* take it a few days in a row, it's just discouraged. I dont know if this is universal, though.
Folks who take it every other day, what insurance are you on? Mine only gives me 8 pills a month, which seems ridiculous in view of the fact that my neuro keeps telling me how safe it is compared to triptans. (I get 9 of those per month.)
It depends on how your doc prescribes it - to get Nurtec every other day your doc has to prescribe it as a preventative
She told me that it hasn't been approved as a preventative. It's so frustrating.
Ugh, that is frustrating! Have you tried other preventatives? My insurance required me to try a drug from three different categories: tricyclic antidepressant (amitryptiline), beta blocker (atenolol), anticonvulsant (topamax) - before they would approve Nurtec as a preventative.
Uhmmm… maybe a little TMI.. but does it cause urinary problems for anyone? Like incontinence? But then after like 72hrs things are back to normal? I’ve only taken 2 I’m waiting to see if the 3rd one causes the same problems before I call my neurologist. Since there’s a thread on it I’m leaving my little “issue..”
Not for me.
If you need nurtech everyday they won't even let you have the prescription Well they won't let you have it for free.
I've started taking it every other day and honestly it works quite well. Still in pain daily but the intensity is noticeable lessened
Yes same, that’s why I want it every day. Because I want it to work even better
Why wouldn't you use a monthly cgrp inhibitor like aimovig, ajovy, emgality instead?
Had bad side effects with ajovy, was allergic, and most of all it made my migraines worse for MONTHS. Don’t want to try another shot. I think my immune system didn’t like it
It’s because if you take more than 9 migraine meds a month it can trigger rebound migraines which are even more painful and longer lasting. Which I can testify is true 🥹
I’ve read as much as I can find on side effects of Nurtec and they are so shady about what exactly it does to your body and how it works. Near as I can tell is it would likely not be good for other parts of your body to have large amounts of CGRP blocker in your system.
But there are a variety of CGRP shots that keep the blocker in the system for most of the month.
Yeah the shot made me feel terrible and so did Qulipta.
Yes there are and I’ve tried them, but I think they are a lower dose than a Nurtec or similar oral route pill.
Who knows. I hope they test it for every day use at some point. And yes the CGRP does play other roles in the body it seems!
I think it’s way too understudied. The whole idea of CGRP blocking. It’s in LITERALLY every cell and function in our bodies. It may work. But at what cost? I was getting HORRIFIC pain in my liver area. To the point my dr filed a report with the fda. It was some of the worst pain I’ve ever had. And my hair fell out for about three days every time I took a dose, plus terrible nausea/vommiting.
Oh no!!! Nurtec has definitely affected my skin and possibly my hair
Does it make your hair fall out? I switch from Qulipta to Nurtec because the Qulipta made my hair fall out. I don’t want it to happen on this drug, too. 😞
I noticed that at first; but it went away after a few months. I did develop excema and bacne around the same time I started taking it as a preventative. I’m 38, so that’s a strange time to develop either of those issues and I attribute it to Nurtec. Both of those side effects are mild for me though
Thank you for the info! I’m going to hang in there and keep taking it. It does help me, and I tolerate it so much better than Qulipta.
Yes I tolerated it so much better too! I’ve been taking it every other day for about a year. It helped more at first (of course) but it definitely still helps. And I really don’t have any bad side effects, which is a miracle for a lot of these damn drugs 😂
I am so happy this works well for you! Of all the drugs I have tried, this one is by far my favorite!
Yes it made mine. Every time I’d take one for 3-4 days after my hair would fall out a lot. Just pay attention to your body. I got horrible right sided abdominal pain with it so I did a bunch of research and found out that a minute amount of people had to have necrotic organs removed bc of it. So after that pain started I got off it. I’m starting ubrelvy as soon as my pharmacy fills it.
This is my worry. A lot came out on my brush today. I will definitely pay attention to how I feel. Thank you for sharing and I hope the Ubrelvy is helpful!
Because rebound headaches. Rebound headaches are hell. There is science behind it. It's no different than taking analgesics or opiates. But injections such as Emgality can help.
No, no and no. At least right now. Learn and research rebound headaches.
Dude you cant!! Research Rebound headaches. I've had them multiple times. It's not different than illeicite drugs.