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Botox for Migraines
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Coki2010 posted:
Hi,

I used to post on here a lot but I haven't been on here for a bit. I finally bit the bullet last week and decided to go ahead and try Botox injections in my forehead, scalp, neck and shoulders for Migraine relief.

It has been just over a week since the injections. The Neuro did say it would take about a week for it to "kick in" for whatever reason that is unknown to me. So far it it has not impressed me. I haven't had a knockdown dragout but it has only been a week. I am still having headaches but they haven't risen to the level of debilitating yet.

Has anyone else tried this treatment? What are your thoughts? I am just feeling a bit frustrated and, frankly, a bit let down. I was so hopeful.

Looking forward to anyone's reply.

Thanks.
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migrainekim responded:
After nearly 20 years of medications that have side effects and don't work, my doctor is now going the route of botox. He is clearing it through insurance and hopefully it will be covered. I have to wait 6 weeks.

I'm sorry to hear it is not working for you so far and hope that in the coming weeks you find more relieve. This is my last resort and neither my doctor or I know what to do next if it doesn't. I'll be watching your post and hope for some relief for you.

Once i have started the treatment, I will comment. Take care.
 
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Coki2010 replied to migrainekim's response:
Thanks MKim,

I am happy to at least hear of someone on here that is going down the same path I am on the Botox injections (not the Migs).

I was suprised how quickly my Dr/Insurance got my Botox approved. It only took 2 weeks for me. I have to drive to another city to a "teaching" hospital for my Neuro. They were great there. My Primary Dr has been working with me for 10 years or so on trying to get my head under control. This has been a lifetime struggle for me. I am 42. I have been on a myraid of meds and I have tried a ton of different treatments. I have tried massage, acupunture and even had a doctor that would "pop" my neck which would make me cry...it was awful. You name it and I have tried it. I am getting towards the end of my rope, so to speak.

I am a 4th generation migraine person. So odds are against me.

I have a headache now but it is not knock down and drag out. And maybe that it will be botox's gift. No more hurling. No stabbing eye pain. I will keep you posted. Please do remember my name and let me know.
 
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yukonok replied to Coki2010's response:
I'm a 55 yr old female who's had migraines since childhood, and chronic over the last 10-15 years (20 to 25 migraine HAs each month). I got my first round of 31 botox injections in Feb 2011. My neuro said it could take up to 6-8 wks to see improvement. For the first 6 weeks, I still had daily migraines, but they were somewhat less severe. I added 10 mg nadalol (beta blocker) for one week and increased to 20 mg per day. After a couple weeks, I began to have 2-3 migraine free days in a row. I completed a 2nd round of botox injections in late May 2011. It's now 6/24/11 and I've had 8 migraines in the last 24 days. It is working! I'm having at least 50% fewer migraines each month! My neuro said some of his botox patients who didn't have success w/preventive meds like nadalol, do benefit in combination with botox. I'm obviously one of them. My neuro and I began trying to get approval from BC/BS insurance within days of the FDA approval for botox for chronic migraine in Oct '10. It took repeated attempts and more and more records over 5 months before they agreed to help pay for it. I'm approved for only 1 year and will have to reapply to continue. I will continue because my life is now somewhat normal compared to what it was. I get up to a week at a time on occasion that I'm migraine free. Although my co-pay is over $500.00 each time and the 31 injections hurt a lot...the outcome is wonderful. BTW - my neuro said if patients don't see an improvement after two rounds of botox, it should be discontinued. Good wishes that your experience will be a good one!
 
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Coki2010 replied to yukonok's response:
Thanks. I have now hit the point where my forehead feels "leaden" because of the injections. Thus far, I haven't had any major headaches but am still getting them. By major I am not having knock down drag out go to bed ones. But again I am getting close to just 2 weeks.

Luckily it only took 2 weeks for approval of my insurance. However, I do not know what any out of pocket costs are going to be for me yet.

I have been getting them as a child as well and am on a ton of different meds to control the headaches.

So far, I am very hopeful. I appreciate your input.

Thanks,
 
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itmatsb replied to Coki2010's response:
BOTOX Has Worked for ME.

I have had botox injections for almost a year and they definately have helped my 24/7 migraines. I've had the migrianes which are often very severe for the last 3 years after a stroke. It usually takes 14 -15 days for the Botox to work and the full effects only last me about 4 weeks, then it starts tapering off. The neurologist said that I shouldn't get them any more than every 8-9 weeks. He steadily increased the amount of Botox to a full 200 units.

I also am getting nerve block injections every 4 weeks which also help my migraines. Before those injections I was on opiate pain pills (Lorcet) and ultram 24/7 which was terrible. And I still had the migraines 24/7.

But my insurance company BCBS of MI has denied covering it. After a full round of appeals with them, we appealed it to the State Insurance Commission who said that they would investigate it, but are waiting to hear back. The injections cost over $7,000 each time, so next we will fight it in court if the State doesn't force BCBS to cover it.
 
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Coki2010 replied to itmatsb's response:
Yeow! Sorry about the Insurance company. I am now worried about what my insurance company will be making me cover as a co pay now. They approved in injections but I am not sure what my portion will be.

I am at the point now where my injection sites (especially forehead) feels "leaden" and very hard to move with my facial muscles. I have not had a major (throw up headache) but it has not stopped the headaches altogether yet. As a matter of fact I have one now that is not making me very happy but i can read so that is better than what it used to be. But I am up and mobile! My next injection appt in in September. That is the soonest I will get they (every 9 weeks is my limit) and 100 units is what I got the first time and my neuro said that 150 was the "gold standard" but you have to pay for the whole 200 unit bottle which was extremely expensive. I did not enjoy the injections and found them very painful. I am still currently on all my preventatives and my triptan and rescues as needed.

I just pray for peace.
 
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carpetcrawler5 replied to Coki2010's response:
Botox usually only works for people who have neck stiffness which causes them to have migs.
 
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gmbuckalew responded:
I am enjoying reading everyone's posts because I've been dealing w/ migraines for years. I finally found a good neurologist who was able to put me on a good maintenance plan for the past 3 years however, I've developed neck pain the past 6 months or so that is triggering more migraines only on the right side of my head and neck. I found a great spinal orthopedist last month who did an MRI/CTSCAN who thankfully saw no structural/nerve problems but thinks I have Dystonia which is uncontrollable muscular contractions. He said the muscle tone in my neck seems to be deteriorating as well...so he is sending me back to my neurologist to have him examine me and prescribe Botox injections as treatment. He advised me that the Botox injections will help relax the muscles and eventually decrease the number of headaches/migraines. I think this will be the answer to my problems but will keep in the back of mind that there may be a chance that it might.
Thanks to everyone for their input!
 
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yukonok replied to Coki2010's response:
Yes, your forehead feels strange because the muscles are paralyzed somewhat, but that begins to wear off after about 8 weeks. I can only raise the outside portion of my eyebrows for the first 6-8 weeks, but gradually, you'll see you more movement, like the frown lines when you squint in bright sunlight. The plus side to that...is fewer forehead lines! I like that side effect. I don't mind less movement in the forehead for fewer or less severe migraines. I did miss one day of work this week due to migraine, but since the second round of botox (at 12 week intervals), I had only 11 migraine days in the month of June! That's fantastic for me. I typically had 25 days per month with migraine! Botox has been worth it to me and I'm thankful I can afford it. Like I said in the 1st post, it's around $550.00 each time for my co-pay with BC/BS insurance.
 
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Coki2010 replied to yukonok's response:
Thanks. I am thankful that I have the ability to chat with people about it. I have been dealing with a persistant headache that I cannot get rid of. I am not an aura person. I was like a red hot stabbing poker in the eye pain person. The best way to describe it now is like a rubber mallet. Not gone but maybe reduced. Different pain but there. I am maybe hopeful that the set of 2nd shots will do the trick. It is almost like I have a mask on my face/head because of the lost feeling due to botox.

I am just tired. That is about all I can say. Tired. i wish everyone luck that tries this and I will follow as well to see if anyone has any different input or circumstances.
 
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Lililu51 replied to Coki2010's response:
I have been using botox for migraines for several years now, it h has been a lifesaver for me. I go to a pain clinic very expensive though, after paying deductible ins. covers ok not
great, but without them I'm in bed every DAY. So dibilitating.
I'm in utah it cost $2,600.00..ridiculos, but neccessary evil. It
takes about a week to work completely. I too started as a child having them 7 years old Dr. said not migraines....now they say it is possible for chilren to get..
 
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shooper replied to gmbuckalew's response:
I realize you post re migraines is quite old... but if you are still having issues... you might want to check out http://www.headache-hope.com/NerveDecompressionSurgery.html

your symptoms sound very similar to my own... and if i can ever get my ins co to pay for this... I am having this surgery done.

my pain management doctor also recent did a c3 nerve rhizotomy - which has also helped with the frequency of my previously daily migraines.


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