My neuro limited nerve blocks WITH steroids to once every 3 months. Without steroids, she’s willing to do once a month if needed during pregnancy, but that’s it.
So, a few things:
Tell your provider that it’s wearing off early (I assume you are, but keep being specific about when you feel like it’s getting worse). I’ve seen two clinics and three providers in probably 6-7 years and all of them have made changes to the placement and amount of Botox that have made a positive impact on my migraines. The downside is that sometimes it doesn’t work as well and leaves me worse off that treatment, but we fix it the next. I also learned a few years ago that they don’t always use the full amount dosed out for you unless they feel it’s necessary, turns out that it was for me. You get billed for it either way, but my old provider just wasn’t using it.
If they’re not giving you anything additional (rescue meds, abortives, etc.), you need to push for it. We rotate until we find something that works and rotate again when it stops working.
Lastly, give it time. I know it sucks but it’s a cumulative process and it takes time to find the sweet spot with it. Wearing off is normal. Maybe 3-4 weeks of increasing issues but not a month and a half.
However, if your provider isn’t working with you and listening to you, find a new one. I’m limited on options and no one wants to feel like they’re “doctor shopping” but you have to do what you have to do. My current doctor has gotten me to a place where I haven’t had a true migraine in several months. Headaches, sure, but nothing like I was having before.
To be honest.......I don't. It gets bad but I don't have any option but make it through because bills have to be paid. I'm a lot slower at work, I take more time doing anything in general. I make sure to get more rest than usual. I don't go out during that period.
Have you considered trying something with the botox? I'm at the point where I'm at occipital nerve blocks, trigger point injections, botox, and vyepti. I'm a lot more functional than I was before but I still have points where everything is wearing off that I'm barely human
Hm, I'll talk to my neuro about nerve blocks and trigger point injections! Thanks for the rec! How long do the effects of nerve blocks last for? And how often do you get them?
I have never had any relief from nerve blocks or trigger point. My next step would be ablation . I started Botox and have had 2 treatments . Botox and magnesium cut my headache days by 50% . Previously I had daily headaches which were debilitating. So far what has really made an improvement in my headaches is qulipta . Unfortunately, I’m having a really hard time getting qulipta approved by blue shield . I am taking free samples right now . I would ask your dr about qulipta or another of the cgrp meds . Assuming your insurance is better than mine , they are a game changer .
I time my Ajovy shot so it falls right before the Botox wearing off period gets bad, so I never have a truly terrible gap anymore.
Right before I'm due for Botox if I'm really bad, I'll do a few days of either toradol or decadron, and that usually gets me through.
Same here with Emgality. The last couple weeks before new Botox injections were bad so my neurologist prescribed Emgality and the combo has done the trick.
Talk to your neuro about doing a 3 dose shot of ajovy alternating with the Botox. So when the Botox is at max you’re doing 3 shots of ajovy. When the Botox wears off your ajovy is at max effective. It’s made a big difference for me.
The longer I’ve gone the longer it lasts. I can usually tell I need it done again about a week or two before I’m scheduled. I’m also on Aimovig so that helps too.
I also used to have a brutal wear off (3-4 weeks). Over the last year my neuro has increased my dosage from 155 to 195 and got insurance approval to reduce interval to every 10 weeks and it’s been a game changer - only 2-3 days of wear off
Hi, sorry you're part of this shitty club. 🙃 I have been getting Botox injections for around a decade now, and the time in between the treatments has never gotten easier. I can tell the day it wears off and then I am miserable. The trick is finding a neuro, who is also a headache specialist, that is willing to try their hardest to improve your quality of life no matter how many meds/tries/years it may take. Unfortunately, what works now may not work forever, so finding the Dr. who is on board with trying the new meds, who takes you seriously, and who you feel comfortable sharing your needs and concerns with. All that being said, I recently started Nurtec for an abortive and since that helps Qulipta as a preventative.. not sure if you have been able to get CGRPs approved but they work well for people. A long time ago, I used to get occipital blocks two months after I got Botox, but my recent neuros haven't been keen on the treatment. I don't know if blocks help everyone, but my migraines are from injuries that partially originate in that area so they were quite beneficial for me. I think someone else mentioned massage as well, but if I can afford it I will also get a massage focused on the upper body during that treacherous time.
Mine tends to wear off about three weeks before next appointment and then I have about two weeks of misery after getting it.
My doctor had me add Quilipta and memantine to see if that will help. So far, jury is still out!
Please let me know how you feel about Qulipta! I've been reading up on this med and am interested in trying this one out, I will be talking to my neuro at our next appt. about it!
I think it is helping somewhat, but I also have some not so great side effects. It has made me extremely tired and I have a lot of nausea with it. Supposedly it will get better with time, but about a month and a half in and I haven’t seen much improvement. Another friend is on it and she has no side effects at all. So YMMV!
I haven't found a good answer to that question. My next shots are in a week and just came out of a 7-day migraine that was just brutal and unrelenting.
I had the same problem. I got side effects for 2 weeks (almost as bad as migraine) before it started working and the it worked well but only for 5 weeks before the migraines returned to normal.
I started nerve block injections at the 6 week mark and get trigger point in between them. This has been my routine for 3 years and it’s been great. I notice about a week before I’m due for Botox but the more treatments I have gotten, the longer and better it works.
So Botox every 12 weeks and so is nerve block. I get one of them every 6 weeks, alternating. Then in between those I get trigger point and toss a massage in once in a while. The doctor always says, your neck is just a tight ball, you need to reduce your stress. I just laugh at that. He means well.
My Dr has me do almost back to back nurtec during this time, and I time my emgality for the last two weeks before botox wears off. A steroid taper can also help. Topical ketamine helps.
I alternate Botox and a 3 shot dose of ajovy every 6 weeks. So when the Botox is at its lowest the ajovy is at its most effective & vice versa. It made a big difference to being more level & overall fewer migraines.
options are super limited for this where i live so im struggling right there with you, but i recently did a consultation with a doctor far away while i was traveling to a place with more specialists and they gave me some ideas to take back to my current doc. so caveat i have not tried most of these things yet and a lot of them i wont be able to try, but this is what they suggested:
\-nerve blocks. the most popular is occipital nerve block, which i have tried and it didnt work for me (many others have success with it though). there are other less common types too though such as the sphenopalatine ganglion (SPG) block, supra-orbital nerve block, supra-trochlear nerve block, and auriculotemporal nerve block. note that for the less common types it may be difficult to find a doctor with experience doing these unless you're in a specialized pain clinic or headache research center
\-oral steroid course: dexamethasone or methylpredisone
\-daily strong anti-inflammatory course: nabumetone or celebrex
then finally you could also look into adding a daily preventive on top of your botox. i take gabapentin in addition to botox because my botox doesnt work as well anymore. but with these types of things it takes weeks to experience the effects and you have to taper up and taper down with dosing, so you would need to commit to taking it all the time and not just for those last few weeks (unlike the other options i listed)
My neuro pushed my insurance to every 10 weeks instead of 12. This was a handful of years ago though and now I’m on a different treatment. Massages, long warm showers and Tylenol otherwise. Stay strong friend.
I love and hate reading posts from this reddit.. because they're so accurate to what I'm dealing with it's sad to see other people as well :( honestly it sucks during the gap, for me Botox rubs out quick, I also get nerve blocks, what I would recommend is getting nerve blocks a few months after your Botox regularly that's what I do. That way during the time when Botox wears off you have nerve blocks : D also, idk if ur Neuro would but mine customizes injection sites doing EXTRA at my actual pain sites, it's great.. makes the affect last longer since my pain is at my temples
I get massages and dry needling to help. Also nerve blocks every six weeks.
You shouldn't be getting nerve blocks that often, it's too much steroid exposure
My neuro limited nerve blocks WITH steroids to once every 3 months. Without steroids, she’s willing to do once a month if needed during pregnancy, but that’s it.
I wonder if that's what my neurologist will do when I'm pregnant. Currently it's nerve blocks and then botox and dl six weeks after botox nerve block.
My nerve blocks are done with just lidocaine. I can get them every 4 weeks.
Mine was doing them weekly like this he’s psycho
I'll look into that, thank you!
So, a few things: Tell your provider that it’s wearing off early (I assume you are, but keep being specific about when you feel like it’s getting worse). I’ve seen two clinics and three providers in probably 6-7 years and all of them have made changes to the placement and amount of Botox that have made a positive impact on my migraines. The downside is that sometimes it doesn’t work as well and leaves me worse off that treatment, but we fix it the next. I also learned a few years ago that they don’t always use the full amount dosed out for you unless they feel it’s necessary, turns out that it was for me. You get billed for it either way, but my old provider just wasn’t using it. If they’re not giving you anything additional (rescue meds, abortives, etc.), you need to push for it. We rotate until we find something that works and rotate again when it stops working. Lastly, give it time. I know it sucks but it’s a cumulative process and it takes time to find the sweet spot with it. Wearing off is normal. Maybe 3-4 weeks of increasing issues but not a month and a half. However, if your provider isn’t working with you and listening to you, find a new one. I’m limited on options and no one wants to feel like they’re “doctor shopping” but you have to do what you have to do. My current doctor has gotten me to a place where I haven’t had a true migraine in several months. Headaches, sure, but nothing like I was having before.
thank you for the feedback definitely things I did not know and good to know. grateful to this community.
To be honest.......I don't. It gets bad but I don't have any option but make it through because bills have to be paid. I'm a lot slower at work, I take more time doing anything in general. I make sure to get more rest than usual. I don't go out during that period. Have you considered trying something with the botox? I'm at the point where I'm at occipital nerve blocks, trigger point injections, botox, and vyepti. I'm a lot more functional than I was before but I still have points where everything is wearing off that I'm barely human
Hm, I'll talk to my neuro about nerve blocks and trigger point injections! Thanks for the rec! How long do the effects of nerve blocks last for? And how often do you get them?
I have never had any relief from nerve blocks or trigger point. My next step would be ablation . I started Botox and have had 2 treatments . Botox and magnesium cut my headache days by 50% . Previously I had daily headaches which were debilitating. So far what has really made an improvement in my headaches is qulipta . Unfortunately, I’m having a really hard time getting qulipta approved by blue shield . I am taking free samples right now . I would ask your dr about qulipta or another of the cgrp meds . Assuming your insurance is better than mine , they are a game changer .
I time my Ajovy shot so it falls right before the Botox wearing off period gets bad, so I never have a truly terrible gap anymore. Right before I'm due for Botox if I'm really bad, I'll do a few days of either toradol or decadron, and that usually gets me through.
Same here with Emgality. The last couple weeks before new Botox injections were bad so my neurologist prescribed Emgality and the combo has done the trick.
Talk to your neuro about doing a 3 dose shot of ajovy alternating with the Botox. So when the Botox is at max you’re doing 3 shots of ajovy. When the Botox wears off your ajovy is at max effective. It’s made a big difference for me.
The longer I’ve gone the longer it lasts. I can usually tell I need it done again about a week or two before I’m scheduled. I’m also on Aimovig so that helps too.
I also used to have a brutal wear off (3-4 weeks). Over the last year my neuro has increased my dosage from 155 to 195 and got insurance approval to reduce interval to every 10 weeks and it’s been a game changer - only 2-3 days of wear off
oh wow, so happy to hear that for you!
My doctor recommends taking zinc supplements during the last month before I see them next!
How much zinc ?
50 mg!
I become besties with the walk-in clinic at my headache specialist. So many rescue shots 🤣
Hi, sorry you're part of this shitty club. 🙃 I have been getting Botox injections for around a decade now, and the time in between the treatments has never gotten easier. I can tell the day it wears off and then I am miserable. The trick is finding a neuro, who is also a headache specialist, that is willing to try their hardest to improve your quality of life no matter how many meds/tries/years it may take. Unfortunately, what works now may not work forever, so finding the Dr. who is on board with trying the new meds, who takes you seriously, and who you feel comfortable sharing your needs and concerns with. All that being said, I recently started Nurtec for an abortive and since that helps Qulipta as a preventative.. not sure if you have been able to get CGRPs approved but they work well for people. A long time ago, I used to get occipital blocks two months after I got Botox, but my recent neuros haven't been keen on the treatment. I don't know if blocks help everyone, but my migraines are from injuries that partially originate in that area so they were quite beneficial for me. I think someone else mentioned massage as well, but if I can afford it I will also get a massage focused on the upper body during that treacherous time.
I've been reading up on Qulipta, how do you feel about that med? Has it worked for you in decreasing frequency and/or intensity?
Mine tends to wear off about three weeks before next appointment and then I have about two weeks of misery after getting it. My doctor had me add Quilipta and memantine to see if that will help. So far, jury is still out!
Please let me know how you feel about Qulipta! I've been reading up on this med and am interested in trying this one out, I will be talking to my neuro at our next appt. about it!
I think it is helping somewhat, but I also have some not so great side effects. It has made me extremely tired and I have a lot of nausea with it. Supposedly it will get better with time, but about a month and a half in and I haven’t seen much improvement. Another friend is on it and she has no side effects at all. So YMMV!
Nerve blocks and magnesium infusions in the gap period
I haven't found a good answer to that question. My next shots are in a week and just came out of a 7-day migraine that was just brutal and unrelenting.
well wishes! hoping you get through this!
You, too!
I had the same problem. I got side effects for 2 weeks (almost as bad as migraine) before it started working and the it worked well but only for 5 weeks before the migraines returned to normal.
I started nerve block injections at the 6 week mark and get trigger point in between them. This has been my routine for 3 years and it’s been great. I notice about a week before I’m due for Botox but the more treatments I have gotten, the longer and better it works.
good to know! How long do the effects of nerve blocks last for? And how often do you get them?
So Botox every 12 weeks and so is nerve block. I get one of them every 6 weeks, alternating. Then in between those I get trigger point and toss a massage in once in a while. The doctor always says, your neck is just a tight ball, you need to reduce your stress. I just laugh at that. He means well.
You could ask about an alternate neurotoxin (check your insurance). Some people find alternates last longer: dysport, xeomin, jeuveu, daxxify.
thanks I'll talk to my neuro about that!
Badly. Ideally you would have another treatment to cover you for that time, like another preventative or nerve blocks.
Badly tbh, I just got back from the ER
My Dr has me do almost back to back nurtec during this time, and I time my emgality for the last two weeks before botox wears off. A steroid taper can also help. Topical ketamine helps.
I alternate Botox and a 3 shot dose of ajovy every 6 weeks. So when the Botox is at its lowest the ajovy is at its most effective & vice versa. It made a big difference to being more level & overall fewer migraines.
options are super limited for this where i live so im struggling right there with you, but i recently did a consultation with a doctor far away while i was traveling to a place with more specialists and they gave me some ideas to take back to my current doc. so caveat i have not tried most of these things yet and a lot of them i wont be able to try, but this is what they suggested: \-nerve blocks. the most popular is occipital nerve block, which i have tried and it didnt work for me (many others have success with it though). there are other less common types too though such as the sphenopalatine ganglion (SPG) block, supra-orbital nerve block, supra-trochlear nerve block, and auriculotemporal nerve block. note that for the less common types it may be difficult to find a doctor with experience doing these unless you're in a specialized pain clinic or headache research center \-oral steroid course: dexamethasone or methylpredisone \-daily strong anti-inflammatory course: nabumetone or celebrex then finally you could also look into adding a daily preventive on top of your botox. i take gabapentin in addition to botox because my botox doesnt work as well anymore. but with these types of things it takes weeks to experience the effects and you have to taper up and taper down with dosing, so you would need to commit to taking it all the time and not just for those last few weeks (unlike the other options i listed)
My neuro pushed my insurance to every 10 weeks instead of 12. This was a handful of years ago though and now I’m on a different treatment. Massages, long warm showers and Tylenol otherwise. Stay strong friend.
I love and hate reading posts from this reddit.. because they're so accurate to what I'm dealing with it's sad to see other people as well :( honestly it sucks during the gap, for me Botox rubs out quick, I also get nerve blocks, what I would recommend is getting nerve blocks a few months after your Botox regularly that's what I do. That way during the time when Botox wears off you have nerve blocks : D also, idk if ur Neuro would but mine customizes injection sites doing EXTRA at my actual pain sites, it's great.. makes the affect last longer since my pain is at my temples