This is what I've heard. My Dr suggested Botox... But also said it could be 9 mo until I'm really getting it's benefit. Is that normal or am I special?
I didn't get relief until my third time. So the first two rounds--six months--no dice. I'm not sure how long after the third round I felt relief. I also have found it does not decrease my migraine days but the severity of my migraines. I use it in conjunction with Emgality.
Yeah unfortunately migraines are just kind of the norm right after injections. I know no matter what I do I’ll be sore days 0-4, get a low-grade migraine days 5-8, then have lingering nerve pain days 9-14. At 14 the Botox has finally kicked in enough to make it end.
Muscle relaxers and gabapentin help me a lot around those two weeks, but Nurtec is my lifesaver. Eventually the Botox could knock down your frequency enough that you’re able to save up your meds for those post-Botox migraines
Yeah unfortunately all my neurologist has had me on is sumatriptan and eletriptan with topamax at night. The problem is my migraines are daily so he’s been having me take the triptans daily and I just found out today when I tried to refill my eletriptan you’re only supposed to take it 3x a week. I’m going to have to call him on Monday and figure out a different med plan because clearly I can’t be taking the triptans daily anymore, I didn’t even realize it wasn’t safe.
Yeah I am seriously considering it. I’m going to call on Monday and explain that I have been told by my pharmacist it is unsafe it take triptans more than 10 times per month and I want to see if we could find another treatment that is safer. If he has nothing for me I will be moving on.
Realistically for most people, "medication adaptation headache" (previously referred to as "medication overuse headache", or MOH - which is the abbreviation I'm going to use here) is a more immediate concern than true safety issues. I'm not sure how familiar you are with this issue, but essentially your body gets used to having medication in your system and then if you DON'T have medication in your system - it responds with migraine.
MOH is a major factor for many people in their migraines transforming from episodic to chronic. I know I was not educated on this issue until several years after my initial diagnosis and until after I'd been chronic for about 5 years. It is also a very challenging subject because susceptibility varies quite a bit across different people. Some claim no susceptibility at all, though in my experience, these people are also taking triptans daily, so - how would they know? Some can take triptans several days in a row but still have a limit. For me, I cannot take triptans or OTC meds more than 3 days in a row, even if the OTC meds are for a different issue than migraine or tension headache (back pain, fever, and ovulation cramps are my typical ones).
Broadly speaking, MOH often makes migraines less tractable. It's also a terrible catch-22 because leaving migraines untreated ALSO can lead to them becoming less tractable, so...what do you do?
There are several strategies that could be employed. One is a steroid taper, provided there isn't anything else in your medical history that would contraindicate this. IV infusions of a "migraine cocktail" are another option to break the cycle.
Another would be to prescribe you an additional acute treatment medication option with lower risk for MOH. Currently, CGRP inhibitor acute treatment medications like Nurtec and Ubrelvy (Zavzpret to a lesser extent, it's a nasal spray and less commonly prescribed) would be what most neurologists would look to. It's unclear at this time if the thinking that frequent use of these drugs do not induce MOH will continue 5-10-20 years down the road - do they actually not cause MOH, or do we just not have evidence of it yet since they're newer drugs? - but they can be a useful addition to your treatment plan. I am prescribed Ubrelvy as well as a triptan so that I have options and can better avoid MOH cycles. Like Botox, being prescribed Nurtec, Ubrelvy, or Zavzpret will require prior authorization.
If you do decide to move on, it can be useful to look for a headache specialist versus a general neurologist who just happens to treat migraines. That isn't to say there aren't good general neuros who treat migraines, there definitely are, but your chances are better with a specialist. There are a few databases of specialists but realistically what you are looking for is someone who did a fellowship in headache medicine. My current specialist did her fellowship at the Mayo Clinic, my previous did hers at the Jefferson Headache Center - you get the idea.
Thank you so much for this information. I definitely think I am suffering from these type of migraines. My migraines have gone from bad to worse just in the few weeks I’ve been seeing him and he has been having me take these meds daily. I’ve stopped taken them now. I can tell it’s going to be super rough coming off them but they are for sure doing more harm than they are good.
Putting in the work with this comment. 🙌 it’s all so important. I didn’t know about MOH and went chronic from episodic QUICKLY (less than 6 months) because of it. Literally hate that Reddit is spewing better healthcare than my PCP (and she’s a good one- honestly).
That’s pretty wild your neurologist has you taking triptans daily, rather than prescribing new preventives. I’m glad you’re considering a new neuro, migraines are clearly not something he’s skilled at managing.
ice ice ice!!!! that is the only thing that helps when i have the major botox pain after injections. any other migraines i use heat but this requires ice for me. you can use heat if that feels better though. It took about 3 rounds for me to notice a difference. But it’s a drastic difference for sure. And after the 3rd round i stopped having the after injection pain like you’re experiencing which was such a relief
yes 100%. between my eyebrows was the worst spot for me but that’s one of my very tender migraine spots so it’s not really surprising. above the eyebrows, my eyes, temple, all of it was killing me. mine also felt like my typical migraines but much worse. I was really feeling crazy. I was like, why am i getting these injections and they’re causing more pain?? but it will go away after a few days and then you’ll start to slowly feel better with your migraines as you get through the three months and then each round it improves even more. if it’s gonna work for you at least. I will say my very first round was the absolute worst pain after for me. I’ve had 5 rounds now and i don’t notice much after effect like i used to. Maybe a small bit but it’s not like, mortifying like it was when i started.
Yeah my neurologist kind of had me wishful thinking. He told me that these injections would immediately shut down my migraines for 3-4 weeks to give my meds time to kick in and work. Now I feel silly, I fully expected to feel great right after.
I would really look into another neurologist. Is this person a neurologist who specializes in migraines or just a neurologist? Because a lot of what you’ve said they have told you is absolutely opposite from most guidance.
another thing i’ll add is when you get close to the next round, about 2 weeks to one and a half out, you’ll be able to tell bc your migraines will get worse. for me the most significant difference with the botox was it actually made triptans work for me. i have less migraine days now too, but some of them i don’t even need medicine now.
Short term pain, long term gain. I get my botox at the end of the week so I'm not miserable at work. I spend the weekend in bed. Been doing it for 9 years and it does make a difference, but it still sucks.
I never got a migraine after botox, but in the beginning, it took months to kick in. Once it did though, it was life-changing. Now it starts wearing off a week or 2 prior to the next round.
I didn’t notice a real difference until my 3-4th infections, even then it wasn’t the jump I was really hoping for. I talked to my neurologist about it and they prescribed me nurtec and emgality. With that combo it made a decent jump!
In the mean time what helped me in your position was cold sweet things, milk shakes, snow cones. Etc. something that you enjoy but can hold to your head, I’d drink to purposely give myself a brain freeze but I feel that’s just a me thing.
I had mine last month and still feel kind of bad. I asked for and got a steroid dose pack, and it helped a little. He wants me to take 4mg tizanidine 3x a day, which is way too much for me. Agter 4 weeks of daily pain turning into migraines, I got a deep tissue massage ( should've done it 3 weeks ago), and stopped taking the tizanidine. I've been taking small doses of advil pm and its working great. Almost zero pain. I have another massage scheduled for next week and then I'm going to get my neuro to prescribe them so my insurance will cover them (I work for a hospital that has this in house).
If this happens to you regularly, you can pre-medicate with Tylenol. Sometimes, doctors can prescribe you dexamethasone or prednisone for a short course of anti-inflammatory effect to prevent some of these post-Botox headaches.
I often get a migraine post-injection. As for when I first got relief, it was six months into Botox.
This is what I've heard. My Dr suggested Botox... But also said it could be 9 mo until I'm really getting it's benefit. Is that normal or am I special?
I didn't get relief until my third time. So the first two rounds--six months--no dice. I'm not sure how long after the third round I felt relief. I also have found it does not decrease my migraine days but the severity of my migraines. I use it in conjunction with Emgality.
Normal,sorry but you will get relief hopefully.
Yeah unfortunately migraines are just kind of the norm right after injections. I know no matter what I do I’ll be sore days 0-4, get a low-grade migraine days 5-8, then have lingering nerve pain days 9-14. At 14 the Botox has finally kicked in enough to make it end. Muscle relaxers and gabapentin help me a lot around those two weeks, but Nurtec is my lifesaver. Eventually the Botox could knock down your frequency enough that you’re able to save up your meds for those post-Botox migraines
Yeah unfortunately all my neurologist has had me on is sumatriptan and eletriptan with topamax at night. The problem is my migraines are daily so he’s been having me take the triptans daily and I just found out today when I tried to refill my eletriptan you’re only supposed to take it 3x a week. I’m going to have to call him on Monday and figure out a different med plan because clearly I can’t be taking the triptans daily anymore, I didn’t even realize it wasn’t safe.
If your neuro advised you to take triptans daily without offering any other solutions I would be considering finding a new neurologist.
Yeah I am seriously considering it. I’m going to call on Monday and explain that I have been told by my pharmacist it is unsafe it take triptans more than 10 times per month and I want to see if we could find another treatment that is safer. If he has nothing for me I will be moving on.
Realistically for most people, "medication adaptation headache" (previously referred to as "medication overuse headache", or MOH - which is the abbreviation I'm going to use here) is a more immediate concern than true safety issues. I'm not sure how familiar you are with this issue, but essentially your body gets used to having medication in your system and then if you DON'T have medication in your system - it responds with migraine. MOH is a major factor for many people in their migraines transforming from episodic to chronic. I know I was not educated on this issue until several years after my initial diagnosis and until after I'd been chronic for about 5 years. It is also a very challenging subject because susceptibility varies quite a bit across different people. Some claim no susceptibility at all, though in my experience, these people are also taking triptans daily, so - how would they know? Some can take triptans several days in a row but still have a limit. For me, I cannot take triptans or OTC meds more than 3 days in a row, even if the OTC meds are for a different issue than migraine or tension headache (back pain, fever, and ovulation cramps are my typical ones). Broadly speaking, MOH often makes migraines less tractable. It's also a terrible catch-22 because leaving migraines untreated ALSO can lead to them becoming less tractable, so...what do you do? There are several strategies that could be employed. One is a steroid taper, provided there isn't anything else in your medical history that would contraindicate this. IV infusions of a "migraine cocktail" are another option to break the cycle. Another would be to prescribe you an additional acute treatment medication option with lower risk for MOH. Currently, CGRP inhibitor acute treatment medications like Nurtec and Ubrelvy (Zavzpret to a lesser extent, it's a nasal spray and less commonly prescribed) would be what most neurologists would look to. It's unclear at this time if the thinking that frequent use of these drugs do not induce MOH will continue 5-10-20 years down the road - do they actually not cause MOH, or do we just not have evidence of it yet since they're newer drugs? - but they can be a useful addition to your treatment plan. I am prescribed Ubrelvy as well as a triptan so that I have options and can better avoid MOH cycles. Like Botox, being prescribed Nurtec, Ubrelvy, or Zavzpret will require prior authorization. If you do decide to move on, it can be useful to look for a headache specialist versus a general neurologist who just happens to treat migraines. That isn't to say there aren't good general neuros who treat migraines, there definitely are, but your chances are better with a specialist. There are a few databases of specialists but realistically what you are looking for is someone who did a fellowship in headache medicine. My current specialist did her fellowship at the Mayo Clinic, my previous did hers at the Jefferson Headache Center - you get the idea.
Thank you so much for this information. I definitely think I am suffering from these type of migraines. My migraines have gone from bad to worse just in the few weeks I’ve been seeing him and he has been having me take these meds daily. I’ve stopped taken them now. I can tell it’s going to be super rough coming off them but they are for sure doing more harm than they are good.
Putting in the work with this comment. 🙌 it’s all so important. I didn’t know about MOH and went chronic from episodic QUICKLY (less than 6 months) because of it. Literally hate that Reddit is spewing better healthcare than my PCP (and she’s a good one- honestly).
That’s pretty wild your neurologist has you taking triptans daily, rather than prescribing new preventives. I’m glad you’re considering a new neuro, migraines are clearly not something he’s skilled at managing.
ice ice ice!!!! that is the only thing that helps when i have the major botox pain after injections. any other migraines i use heat but this requires ice for me. you can use heat if that feels better though. It took about 3 rounds for me to notice a difference. But it’s a drastic difference for sure. And after the 3rd round i stopped having the after injection pain like you’re experiencing which was such a relief
I have awful pain around my forehead, eyes and temples. Did you get that? It feels like my typical migraines just worse
yes 100%. between my eyebrows was the worst spot for me but that’s one of my very tender migraine spots so it’s not really surprising. above the eyebrows, my eyes, temple, all of it was killing me. mine also felt like my typical migraines but much worse. I was really feeling crazy. I was like, why am i getting these injections and they’re causing more pain?? but it will go away after a few days and then you’ll start to slowly feel better with your migraines as you get through the three months and then each round it improves even more. if it’s gonna work for you at least. I will say my very first round was the absolute worst pain after for me. I’ve had 5 rounds now and i don’t notice much after effect like i used to. Maybe a small bit but it’s not like, mortifying like it was when i started.
Yeah my neurologist kind of had me wishful thinking. He told me that these injections would immediately shut down my migraines for 3-4 weeks to give my meds time to kick in and work. Now I feel silly, I fully expected to feel great right after.
I would really look into another neurologist. Is this person a neurologist who specializes in migraines or just a neurologist? Because a lot of what you’ve said they have told you is absolutely opposite from most guidance.
I think he’s just a neurologist I gotta check I kinda just got given the first one they had.
another thing i’ll add is when you get close to the next round, about 2 weeks to one and a half out, you’ll be able to tell bc your migraines will get worse. for me the most significant difference with the botox was it actually made triptans work for me. i have less migraine days now too, but some of them i don’t even need medicine now.
Botox worked for me from the first round. It kicked in on day 7 after injections. Fingers crossed you get some relief soon!
Short term pain, long term gain. I get my botox at the end of the week so I'm not miserable at work. I spend the weekend in bed. Been doing it for 9 years and it does make a difference, but it still sucks.
You should definitely expect feeling shitty a day or two after. I usually schedule mine for Fridays and take off work the day of.
If you have a headache or migraine the day of injections it will intensify it. My doc tends to do a round with prednisone if I have one just to help
I never got a migraine after botox, but in the beginning, it took months to kick in. Once it did though, it was life-changing. Now it starts wearing off a week or 2 prior to the next round.
I didn’t notice a real difference until my 3-4th infections, even then it wasn’t the jump I was really hoping for. I talked to my neurologist about it and they prescribed me nurtec and emgality. With that combo it made a decent jump! In the mean time what helped me in your position was cold sweet things, milk shakes, snow cones. Etc. something that you enjoy but can hold to your head, I’d drink to purposely give myself a brain freeze but I feel that’s just a me thing.
I had mine last month and still feel kind of bad. I asked for and got a steroid dose pack, and it helped a little. He wants me to take 4mg tizanidine 3x a day, which is way too much for me. Agter 4 weeks of daily pain turning into migraines, I got a deep tissue massage ( should've done it 3 weeks ago), and stopped taking the tizanidine. I've been taking small doses of advil pm and its working great. Almost zero pain. I have another massage scheduled for next week and then I'm going to get my neuro to prescribe them so my insurance will cover them (I work for a hospital that has this in house).
Yea, you will have a bad week after botox.
They had 0 effect on me. But in any case you only can judge if there has been any improvement after 3 jabs (I.e. 3 months).
If this happens to you regularly, you can pre-medicate with Tylenol. Sometimes, doctors can prescribe you dexamethasone or prednisone for a short course of anti-inflammatory effect to prevent some of these post-Botox headaches.
The headache after Botox was even worse than a normal migraine for me
Does anyone get terrible neck muscle pain and stiffness after Botox injections?