What to do when Botox stops working
Botox is the most effective and the safest preventive treatment for migraine headaches. However, in a very small number of patients, Botox loses its effectiveness over time. This happens for two main reasons – the person develops antibodies as a defense mechanism to block the effect of Botox or headaches change in character and stop responding to Botox.
It is easy to tell these two reasons apart. If Botox fails to stop movement of the forehead muscles and the patient can frown and raise her eyebrows, it is most likely because of antibodies. On a very rare occasion this is due to a defective vial of Botox, so to confirm that antibodies have formed, we give a small test dose amount of Botox into the forehead. If again there is no paralysis, we know that antibodies have developed. This can happen after one or two treatments or after 10, but in my experience over the past 25 years, significantly fewer than 1% of patients develop this problem.
Fortunately, some patients who develop antibodies to Botox, known as type A toxin, may respond to a similar product Myobloc, which is a type B toxin. Myobloc is not approved by the FDA to treat chronic migraine headaches, but it has a similar mechanism of action and has been shown to relieve migraines in several studies. Injections of Myobloc can be a little more painful, it begins to work a little faster than Botox, but the effect may last for a slightly shorter period of time.
An even smaller number of patients have naturally occurring antibodies to Botox, which is most likely due to an exposure to botulinum toxin in food. I’ve encountered 4 or 5 such patients and a couple of them who did go on to try Myobloc, did not respond to it either.
When Botox stops working despite providing good muscle relaxing effect, it could be because the headaches have changed in character, severity or are being caused by a new problem. It could be due a sudden increase in stress level, lack of sleep, hormonal changes, drop in magnesium level due to a gastro-intestinal problem, or another new illness, such as thyroid disease, diabetes, multiple sclerosis, or increased pressure in the brain. Such patients need to be re-evaluated with a neurological examination, blood tests, and usually an MRI scan. One of my patients who was doing well on Botox for several years, did not have any relief from her last regular treatment. Since she had no obvious reasons why her migraines should stop responding to Botox, I ordered an MRI scan. Unfortunately, she turned out to have brain metastases from breast cancer which had not yet been diagnosed.
Yes, it sometimes starts working again after taking a break. You may also want to ask your doctor if he or she can get approval for Xeomin instead of Botox. There are four drugs similar to Botox and sometimes when Botox stops working, another drug might work.
Botox helped me so much for over a year. Now it has stopped working. Shojld I try again? It’s over 6 months since my last shot. Didn’t want the pain if it wasn’t going to work.
This would be very unlikely to be due to Botox. Unless, it was a different form of Botox such as Myobloc or the injections were given in sites different from usual ones.
Hi. I’ve been receiving Botox for chronic intractable migraines for 19 years years and this past treatment in April 2022 has made me feel worse than I ever have. Been having daily headaches, I’m dizzy, having visual vertigo when attempting to drive or ride in a car. Seeing movement causes me to get dizzy. Could these side effects be due to the Botox? Thank you.
I have been getting 200 units of botox every 90 days as prescribed by my neurologist for the last 4 years. I would balance it out every 90 days and get botox cosmetically done on my forehead and around my eyes. Over time I have now created antibodies and my body has become immune to Botox and it no longer works cosmetically so I’m assuming it’s not working anymore for my migraines. They say this is rare and only happens in 1% of people; well I happen to be that 1%.
Thank you, Dr Mauskop. That is very helpful. You have saved me a lot of appeal work that would be a waste of time!
Unfortunately, this insurance, while they have approved my Botox for a year, reviews each dose when the bill is submitted, to be sure it was 12 weeks from the last one, before they pay! I would gladly pay for 1 dose a year to make it work, but that won’t work. Maybe I can afford to pay for all of them with the Savings Program. This insurance has the best overall coverage I could find, but I will follow your advice and look into some of the migraine specifics with the next open enrollment.
Thanks again!
We have not had any success with insurers who insist on 12-week intervals. Not all do. So, if you can switch insurers at the end of the year, find out if another insurer may cover more frequent injections.
Another option is to pay for one additional treatment each year. This way, you can get it every 10-11 weeks. The manufacturer of Botox offers up to a $1,000 rebate, which makes it more affordable. You have to submit the bill to your insurance first, which they will decline to pay. This denial is then submitted to botoxsavingsprogram.com.
I did well on Botox as long as I got it every 11 weeks. I would have wear-off before 12 weeks. However, my insurance changed and the new insurance refuses to cover Botox outside the “FDA approved” 12 week interval. I have resistant chronic migraine and even a week of poor control can completely de-stabilize my control. I was using Emgality and then Ajovy which helped with this bridge period, but had to stop due to an allergic reaction. I cannot take Aimovig due to a severe latex allergy.
I am hoping you have a reference that supports using Botox more frequently that might help with the insurance…..
Yes, the effect of Botox is usually cumulative, i.e. each subsequent treatment gives better results than the previous one. This happens only if you do it every 12 weeks or so. If you wait longer, the frequency of migraines goes up and you are again starting from a higher baseline.
If botox is started, stopped and restarted, is there an efficacy change with it? Due to insurance reasons, I was in a dry spell for almost a year. I’m back on but I don’t feel it is as effective as it used to be. The muscles in my forehead still don’t move when I get them.
If anything, Botox makes abortive drugs such as triptans more effective.
I used to respond well to Maxalt. Since last year, I developed chronic headaches and decided to go for botox (to avoid taking pain medications too often). I got my first treatment 2 weeks ago. 3 days ago I felt like a migraine coming so I took Maxalt but it didn’t work. Can botox make triptans less effective?
Yes, this is very common – migraine headaches worsen if Botox is not given on time. For some, it has to be given every 12 weeks but for others, every 10 weeks.
A friend who has had botox injections in her forehead for years has not had injection for awhile due to the virus. She is experiencing headaches and we are wondering if the headaches are occurring because she hasn’t had her routine injection. Is this a possibility! Thank you for your help
Thank you for the info, this would explain a lot for me. I have suffered from chronic migraines for about 28 years now and before mid last year had tried everything except botox. My first treatment had very little change with only about 1 headache reduction per week and 0 migraine reductions. But this only lasted for less than a month. I am now coming up to my sixth month on botox having had another set of injections late last year, this lot had 0 reductions of anything. From the first lot of injections I had full movement of my forehead muscles and only a tiny amount of stiffness in my neck after the first injections but nothing after my second lot. I’ll ask my neurologist about other treatments when I see him next.
Thank Dr Mauskop. DTR (Disclusion time reduction) is performed by a handful or dentists. With computer guidance they fix maloclusion caused by dental work or braces. They substract and add milimeters so that the bite is more even. 80% of TMD patients see their symptoms minimized or resolved in just a couple of sessions, including migraines and tension headaches. I am considering it when I am done with my braces. Here’s a useful link:
https://youtu.be/Q0xkJNF0l_E
Three weeks is too early to tell if the second Botox treatment is going to help, but if there’s been some improvement with the first treatment, it’s worth doing it the third time. I’m not familiar with DTR. Yes the CGRP drugs look very promising and the first one, Aimovig (erenumab) should be available in early June.
Dr Mauskop, thank you for the information. I was wondering when do you determine that the Botox treatment didn’t work for your patients. I hear it’s usuallly after the second round?
I received my second round three weeks ago, and I haven’t seen much improvement in frequency yet. Possibly in severity. However I did have some improvement after the first round in both frequency and severity. I went from 18 to 12 migraines after the first round, but I have been having almost a daily migraine after the second. I wonder if I developed antibodies or it hasn’t kicked in yet. I can raise my eyebrows but I can’t frown.
I do have TMJ disorder so my neurologist injected the masseters. However I have had braces for 3 months to address the TMJ and have had a lot of problems related to it this month, they were maybe moving my teeth too fast and my right masseter has spasms all the time. So I wonder if that’s why the Botox hasn’t been as effective this time.
Once you determined that your patient is not a good candidate for Botox, what does that mean in terms of treatment? I guess hopefully CGRP soon and other preventives? Could it be that other muscles such as the SCM or ptergoids that are not injected are involved and still sending pain signals?
I also was interested in your thoughts on DTR if you are familiar with it. I asked you about it in another of your TMJ posts. Thank you for all the wonderful info you provide.