Botox for Migraine
5Hi. I think most of y’all know I suffer from migraines. I’ve been through a lot of different treatments and the Dr has just decided I qualify for Botox.
TBH I am super nervous about the idea of thirty something shots in my head. (OMG)
I am curious if anyone here is doing botox treatment and can provide feedback. Does it work well? Does it hurt for you and how many treatments before there was a benefit? Any concerns I should have?
Thanks!!
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I can’t provide any feedback but I hope this works.
Thanks @yakkoTDI, me too!!
“Based on meta-analysis of pooled clinical trial data, botulinum toxin is superior to inactive placebo for preventive treatment of migraine, report Prof. Benoit Chaput, MD, PhD, of University Hospital Rangueil, Toulouse, France, and colleagues. “Botulinum toxin is a safe and well-tolerated treatment that should be proposed to patients with migraine,” the researchers write.”
A meta analysis takes statistically combines a bunch of studies to see what they collectively say about something. This article (see below for link) came out in 2019 so is fairly recent.
https://www.sciencedaily.com/releases/2019/01/190103110722.htm
I used to get migraines and they were caused by my neck muscles that go from my collar to around the back side of the ear. I knew that was the cause because I can press on that muscle and it made the headache worse.
I was getting injections in my neck every 6 weeks and the doctor would only do one side at a time so it was really 12 weeks between shots for each the left and right sides. The shots never lasted that long so I continued to get migraines anyway.
Eventually the doctor prescribed Flexeril as a muscle relaxer and it works great and I was finally able to stop getting the injections in my neck muscles. I have only had 2 migraines since I’ve been taking it for several years. I’m prescribed 3/day but only take 1 at midnight and I’m good for 24 hours.
Interesting fact about Flexeril, my insurance company stopped paying for it because they claim it’s supposed to be for acute issues and not for chronic use. I’ve been using it for so long that they don’t want to pay for it now but GoodRx prices is only $30 for a 90 day supply which really lasts me a lot longer because I only take 1 pill per day. I’m okay paying the out-of-pocket prices for it since it works so well and I don’t have to get injections.
2 words: Second Opinion.
From our experience-- my daughter and husband have classic migraines and have dealt with them most of their lives. My husband has used sumatriptan injections when they came out in the 90’s, has used a variety of other pills to deal with severe attacks. My daughter, on the other hand, has more frequent migraines and has also tried most of the same drugs and has been through 2 rounds of Botox. (She said the first time was more uncomfortable than the second set of injections) Unfortunately, she is still getting migraines, about 10+ per month, and the migraines are “different” causing her to miss more work than before the Botox treatment. Back to my husband: he started taking Aimovig in October, a once a month injection, and has not had a migraine! His neurologist wasn’t sure if it would work since Bob is is only male patient who has migraines, but thought it was worth a try. Needless to say, we are hoping that our daughter can try this as a possible solution.
@lh2oman5
Aimovig didn’t work for me. Every time I took it I would get violently sick about an hour later. The Botox will get less and less painful, you get used to it. I always try and take a muscle relaxer or Vicodin before I go so I don’t move as much but I’m getting mine around my eyes. I don’t get Botox for migraine but get them across the forehead also which is where they do them for migraines and I notice it can bring on my migraines. But over the years it has gotten better. Have your daughter stick with it for a couple more times before she calls it quiets. Yes it’s a toxin going into your muscles and making them do something they don’t want to do. If you fight the Botox trying to settle into the muscles it’s going to make everything worse. It’s almost like there’s a learning curve to Botox. Sounds stupid but that’s how I feel.
I wasn’t going to post this bc it’s something I’ve had since I’ve been in 3rd grade and always been insecure about but you guys don’t know me so who fucking care (and maybe it will help someone). I have a condition called blepharospasm. Basically I have twitches I’m my eyes and it causes me to blink my eyes a lot. I have a couple other ticks that can be brought on by stress or lack of sleep but over the years I’ve learned to control them better. When I was a kid they thought I might have a mild case of Tourette’s but they ruled that out. I don’t shout out stuff or anything like that, I’ll scrunch my nose, sniff or make a clearing my throat sound occasionally. I’ve been getting Botox around my eyes, my nose and across my forehead since I’ve been in 3rd grade. It can hurt like a muther fucker, cause bruising (if they pop a blood vessel bc you move, you have to lay absolutely still) and you can’t touch anywhere they put the Botox for about a week bc it takes that long to absorb into the muscle. If you do touch it you can mess with the Botox and mess how it’s absorbed into the muscle. I’ve had tons of black eyes (from popping blood vessels) lazy eye and a few occasions were one of my eyes was basically shut bc I’ve fucked with it. For migraines it’s pretty common for them to do them across the forehead and in the back of the neck. It takes about two weeks for for the Botox get absorbed and kick in. I suffer from horrible migraines myself and find that when I get my Botox sometimes I’ll get bad migraines while the Botox is kicking in. But does it help, yes and if your migraines are that bad it’s definitely worth a try. There a couple benefits to the Botox too. You’ll never have wrinkles while they do it bc it’s also going to relax those muscles and get rid of any forehead wrinkles. This Is where people get Botox for winkles also. It’s not like you see in movies where peoples face is frozen and blown up. Also I would plan on taking the day off work or not returning after it’s done. As I find it’s very draining for me but I also get them around my eyes too. I do find the second day putting an ice pack on my face feels very good and helps me to relax (I also do this when I feel I can’t relax to let the Botox settle in). Also make sure your dr knows what he’s doing with the botox bc it’s in there for a good couple of months. Oh I go every three months for my shots and I can feel it start to wear off anywhere from 30 days to 2 weeks before I need to go again, more on the 30 day side. Again this is a very personal subject for me so please don’t post mean shit. Jokes I can handle. But feel free to pm me if you have any questions, I’ll answer anything I can as I have a lot of experience with Botox and migraines.
@Star2236 thank you so much for posting, the info you provided is super helpful! I ended up contacting my Dr today to ask him to start the approval process. Not sure how long it will take, but I may reach out with questions over PM.
One safe question. How long does the dr appt last? And are the needles small?
Again, thanks much and no one is allowed to tease you!!
@Star2236 Wow, that sounds like a lot to have to endure for your entire life! No jokes, just wanted to say it’s brave of you to put this out there.
@Kyeh @Star2236
That’s good info. Thx for sharing that.
@tinamarie1974
The drs appt is very very short. Like less than 20 mins, the needle part is extremely short only a few short couple of minutes. The needles are so small (like the smallest needles they can use) you barely feel them going in, what you feel is the Botox being injected. The forehead is probably the least hurting place and I can’t imagine, I can’t imagine the back of the neck hurting all that bad either. I get epidurals and pain shots (cortisone and lidocaine) every 2 months (was in a really bad work injury) in the back of my neck, along with my shoulders and back and that hurts way more than the Botox and the needle is bigger. Don’t worry about the needle size it’s super, super small. What your biggest problem is going to be us when the Botox is trying to set in and your muscles are fighting it. It’s a very weird feeling and one that I can’t explain but you’ll know it, almost like your constantly trying really hard to focus on something. You just need to find a way to relax. That’s why I do the ice pack, it helps me relax and let the Botox set in. Again please pm me along the way with any questions.
I’m very glad I can forward with all this and was able to help someone. It’s been my lifelong secret I keep from people unless your my best friend. But being able to help someone with migraines which I deal with everyday, really makes it all worth it.
@Star2236 “but you guys don’t know me so who fucking care”
I mean. We fucking care. That sucks. Thanks for sharing. Hope it helps
@unksol
What I mean is you can’t pick me out on a street and point at me and say “oh that’s the girl with ticks in her eyes”. Lol
@Star2236 @unksol
I hear body language analysis YouTube vids talk about rapid blinking, etc; and humans commonly have instinctive reactions to those sorts of behavior cues.
So I can imagine that this sort of neurological situation where someone is unusual in this regard would cause a lot of long-lasting social grief and lack of social self-confidence, starting in childhood.
@f00l @unksol
Yes, kids are the worst young ages with teasing. I’m sure it’s due to them not understanding the situation and even understanding what’s going on with themselves so they point out flaws in other people.Grade school was not fun as I teased a lot even in the same social group I ran in (the boys), after a while I died down. I had a very good best friend and she knew and I think behind my back stood up for me a lot. I’ve learned to be a very strong person from a young age. I always wanted to be one of the popular kids (bc being popular meant less chance of teasing) until I got to high school about mid way through my freshman year. I realized I no longer cared what anybody thought about me (something that some adults still have problems with to this day). I didn’t publicly the fact that I had ticks in my eyes but it didnt define me also. Ever since then I’ve been able to be me and still have the same attitude. Now don’t get me wrong, when I have a bad lazy eye I get really self confident about it and hide in my house instead of going out into the world. I’ve also learned to control it better and hold what’s know as “my release time” off time I’m home or in a comfortable space. But bc of all the teasing as a child I think is why I’m so comfortable with myself today (if that makes sense) bc it’s made me to be such a strong person. As an adult, all my friends know and when somebody asks me what was going on with my eyes I dont make up some dumb excuses like I did as a kid, I just tell them. I find teaching is usually the best way to help people understand.
Actually opening up to everybody has been kinda empowering for me. Bc it’s on the internet and will be there forever. As long as my face isn’t posted next to name.
So interested in the opinions/experiences here… My dr advised me to get botox too… My migraines are caused by a bulging disk in my neck and the muscle relaxers help, but I am a light weight and can only take 1/2 dose only at night.
i have pushed off the botox as is scares the crap outa me!
@mikibell Are you the person we find sitting spaced out under the table after half a drink?
@mikibell The muscle relaxers used to make me fall asleep so I started with half a pill and then eventually went up to the full pill. Now I can take a full one and it doesn’t make me sleepy at all. Suppose I’ve become immune to that side-effect.
@mikibell
Botox doesn’t effect you like say a drink would as you say your a light weight. They start out with a specific dose suggested for your body/muscle mass and can alter it to fit you. Like I said you can’t touch the area for about a week bc it will alter Botox but it’s not anything like a drink would effect you. They can adjust the does as time goes on. Some people like me are just really sensitive to stuff ( different prescription fillers). Anyways I get 2.5 (mg I think, your dr would know) in all spots. It’s considered a very, very baby dose.
Botox for migraines doesn’t have a lot side effects as opposed to around the eyes like mine for my Blepharospasms. Bc it’s in the muscles of your forehead and back of neck. what’s the worst that’s gonna happen? Your gonna look 20 years younger bc it gets rid of all your forehead wrinkles. Yes it might make your migraines worse for a while as you have to learn to allow the Botox to absorb into your muscles and not force it away (that’s why I say Botox has a learning curve). You may thinks it’s painful first coupe of times bc their injecting a foreign toxin into your muscles and you have to get used to it. That’s why I say give it a year before you quite. But honesty if your migraines are that bad (bc mine are) wouldn’t you do just about anything besides sell your soul to get ride of them)? And Botox is completely reversible once it wears off, so if anything your only stuck with the effects for about 6-7 weeks.
I did Botox for migraine shots for a year (so, four rounds). It helped to an extent, but I still had a significant number of migraines per month. When it was time to schedule what would have been my fifth round of shots, I had a discussion with my neurologist about whether the Botox was really worth it (it took about ten days to two weeks for the Botox to really take effect after the shots, and the Botox wore off two weeks before it was time for the next round of shots, so that was about 4 weeks out of the 12 week schedule with no benefits from the Botox; plus I was still having quite a few migraine days per month even when the Botox was in full effect), and she suggested I tried one of the monthly shots that had just been approved by the fda. The drug rep had just given the doctor’s office Ajovy ‘sample’ shots, I gave myself an Ajovy shot in the doctor’s office that day (January 2019, I think?), and I’ve been taking it ever since. It has been a wonder for me. I do still get a couple migraines per month (they usually start in my occipital nerve and suboccipital muscles; the Botox had killed those when I was getting the Botox shots, but my insurance will only cover Botox OR a cgrp-inhibitor), but this is the best I’ve been since the many years ago when my migraines became a daily occurrence that severely impacted my life and my ability to function.
But that’s just me. I know some people for whom Botox has been a life-saver. I know people for whom Ajovy didn’t work but Aimovig did. I know people for whom working with a chiropractor did the trick. There are so many causes of and triggers for migraines and so much still not understood about migraines that I suppose it makes some sort of sense that so many different treatments work for different people. And I’m glad that research continues to bring about new treatments. But it still sucks that there isnt some one grand solution
I’ve been on Botox for a few years now and can say without doubt they work well for me.
during covid shutdown i missed a couple rounds and started going back to my classic 16+ days a month making me a sumatriptan addict (if that is really such a thing, but I admit I still have a stockpile to this day of shots/inhalers/pills and a few different *triptans just in case).
the 30+ shots are not the highlight of my day by any means, but they aren’t that bad, and you certainly get used to it… and there is the added bonus that i usually have a bit left over and my doc puts it in my jaw which has greatly reduced my clenching at night!
i still have a couple days a month which in my book is perfectly acceptable, as they are NEVER as bad as a light day without the Botox, and a half an Imitrex is enough, and I couldn’t tell you the last time i had to curl up on the floor in front of the toilet in tears.
i can always tell when my 12 weeks are coming due because i may have an extra couple days a couple weeks before, and there are always still bizarre weather-based migraines I can’t avoid (particularly this year with some weird weird winter temps bouncing from -18f to 39 in 24 hours).
I say it’s worth trying for a few rounds no matter what, because 30 stabs in the head are nothing to a minute of a migraine! and it works well enough for me that i haven’t been willing to try the new protein blockers, as i would have to go through a complete reset before they would be approved, and the Botox is working.
GOOD LUCK!
I had Botox for TMJ and it worked like a dream. Not sure how it works for migraines, but I hope you feel better soon!
I really appreciate this forum. I have spent a full year now trying to figure out what’s wrong with me. It started one day at work: sudden and intense Vertigo leading to vomiting and loss of consciousness. I woke up in an ambulance delirious and spinning out of control. 15 hours later I resumed normal function and was released from the hospital. Since that day, I have encountered the same events multiple times; always without much warning and lasting minutes to multiple hours. I’ve been diagnosed with Meniere’s Disease and recently my ENT forwarded me over to a Neurologist GP who is treating me for Migraines. I am now taking Propranolol, Magnesium, Lorazepam, Ibuprofin 800mg. Nothing changes the unpredictable and all-consuming Vertigo that comes along with no warning. I’ve now missed a whole year of work, and life. I can’t trust myself to drive a car, or even leave my house for any amount of time. Anyway, the Neurologist is now working me towards Botox. She believes my Vertigo is actually Migraines even though I don’t experience actual headache when these bouts of vertigo and nausea come about. She has told me it may not work and there is a risk of death if she accidently injects Botox into my blood stream. She says not to worry too much because that hardly ever happens.
Is there anyone out there who is experiencing the horrors I do? What are you doing about it? Is there any hope for me or should I consider taking a mega dose of Botox to the bloodstream and being cured for good?
@accelerator Might be worth getting a second opinion about both what is wrong with you and how to treat it at a top ranked place even if you have to travel to get there. I have done that on occasion and each time it is worth it whether or not they change the diagnosis or treatment. If they agree with your doctor that gives more confidence in that person’s skill and you know something is unlikely to be overlooked. If they disagree you an always get a second second opinion. Usually if they disagree I go with what the top place says and so far that has not steered me wrong.
https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery
@accelerator @kidsandliz
Gee… where to start?
not to worry too much
So you should worry some… but not too much? How much is enough but not TOO much??
that hardly ever happens
Really? Just how ‘hardly’ are we talking about? 1 in a thousand? 1 in ten thousand? 1 in a million? Has she ever actually done that to anyone? How many has she done successfully? How many falilures/deaths? Is she qualified/certified?
My 13 year old gets botox shots for her migraines. The shots work amazing. She used to throw up non stop from her migraines. She is absolutely terrified of needles but she said I’ll do it, she said it’s worth it. She said the shots are not too bad, they are done very quickly. It takes about 10mins for the dr to do all the shots. She has been getting the shots for the past year now and she has only had 2 migraines in the last year!! She used to get 5-6 a month. Do the shots, they are life changing!
Sorry I didn’t respond to anyone over the last few days, but I had a severe migraine that had me laid up all weekend. Thinking it was related to barometric pressure from a weather incident (snow).
Anyway, just wanted to thank everyone who responded either visible or via whisper. I really appreciate the feedback. I had an appt w my neuro today and he is putting in the approval request for botox today. Hopefully it gets approved and I can get my first treatment this month
@tinamarie1974
?
Yikes, I hope you feel better now. And you got snow …
@Kyeh I do, thanks!
And we got a little
@tinamarie1974 Wow, that’s pretty!