Botox suddenly quit working

[Josie53]

I've been on Botox injections every 3 months for five years. Once before they stopped working for my chronic migraines. The neurologist increased the dosage at that point and it did the trick. Am faced with that again. Had Botox over three weeks ago and am back into the daily chronic migraine cycle. Even had an IV cocktail the end of last week with no improvement Does your body just become immune to the toxin after a certain period of time? I'd be interested to know how many other chronic migraine suffers this has happened to. Thank you!

[Cat00]

My experience of botox is that it waxes and wanes. But every time it worked on me I would go below the 15 days a month threshold and they would stop it, so then I'd immediately get worse again. They've done that so many times now.

[Josie53 in reply to Cat00]

Isn't it odd that the benefits of the Botox vary, CatOO? Makes you wonder if you have been injected with a "batch" that was not quite right. Afraid to discontinue the Botox entirely for fear that the headaches will get significantly worse. What a quandary ! Thanks for your reply

[Cat00 in reply to Josie53]

A lot of its to do with the stress threshold. If you go through periods of stress of mental or physical kinds your brain is in a more excitable state, the more excitable your brain state the harder it is for the botox to calm that down, so it may take it down but it may not be enough to stop migraine breakthrough. I think it's still worth it bc it will help you deal with these stressors, and then coupled with your own practical methods to limit those outside forces the combination should reduce frequency, but it can only do so much. Personally even if I'm still having migraine over 50% of the time, the severity ramps up without it, even during a bad round of botox.

[Josie53 in reply to Cat00]

Thanks, Cat. I have also noticed a significant connection between stressors and the frequency of my migraines. Have not been dealing with either so am clueless as to why they have jumped on me on a daily basis. I appreciate your input. Stay safe!

[Cat00 in reply to Josie53]

You too, Good luck!

[Cetkat in reply to Cat00]

The 15 days is an insurance issue. It's not based on any medical need to stop the Botox.. it's just that insurance will only cover bad cases. The fact that stopping it causes an increase again simply means it does work & you should be able to have it. It's a catch 22. Solution: "Your migraines are less in number and severity, but you STILL GET 15 or above a month on average." Therefore the doctor can report to the insurance company it works, but not so well that you don't qualify anymore. Your doctor will probably realize that you're not being entirely honest, but won't be against it in a situation like this. What you tell him is what goes in the chart.

[Mary1959]

Hi Josie, thanks for your reply, sorry to hear the botox stops working for you. When it did work, did you get rid of migraines altogether, or does it just make them less severe? Most medications, in my experience, stop working, when you're body gets used to them, we just have to keep hoping that something else works instead. Hope you soon find something to help x

[Leeleeds in reply to Mary1959]

Hi Josie,first time I’ve written on here but your comment resonates - my experience of Botox is similar to yours. One day it just stopped working after 5+ years as well as it did and I would wake up at 0300, since then I’ve been on a journey of cgrp which again worked initially and then has deteriorated. It’s very frustrating. Lee

[Josie53 in reply to Leeleeds]

Tried Aimovig yesterday. Too early to tell if the headache will stay gone. Dealing with migraines is an uphill battle!

[Josie53 in reply to Mary1959]

Some days I was symptom free which was glorious, Mary. When I did get the headaches, they were less severe and easily handled by Imitrex. Yes, I fear that my body has become immune to the Botox after 5 years of injections. The Aimovig did little to break the cycle. It is quite discouraging but all we can do is pray that something else works. Thanks for your reply. X

[Mary1959 in reply to Josie53]

Good luck and take care, were in this together x

[Cara71]

hi Josie are you in the US? You mention IV cocktail, id like one of those but don't think we can get them in the UK

[Josie53 in reply to Cara71]

I do live in the US. The cocktail was a mixture of Toradol, Ativan, Benedryl, Zofran and something else. Hopefully they can provide something similar where you live. 🤞

[Cara71 in reply to Josie53]

thanks unfortunately there's no such thing in the UK and a and e is a horrible experience especially if you had a migraine too.

[Liseanne]

Hi Josie,

I've been on Botox for 4 years. The neurologist had to change the location of the injections before it actually worked. Most of the injections now are done on the back of the neck and head, and a few along the hairline at the front. This reduces the intensity of the migraines for me, and it took 3 years before the number of migraines was reduced. Have you discussed changing the location of the injections with your doctor?

[Josie53]

A few of the injection sites have been changed but will suggest altering some others as well. Unfortunately, am not due for next round of Botox until the end of May. Appreciate the suggestion. Thanks

[CINDY471]

I was told every pain relief will eventually stop working because it's just a bandaid and that your body is trying to tell you that you are doing something that your body doesn't like. Figure it out and avoid what your body sees as poison and your migraines will stop.

For me, it was all forms of dairy. 11 days after I gave up dairy, my migraines stopped. It's been over 4 years since I gave up dairy and am amazed at my transformation. My neurologist even congratulated me for figuring it out (which really ticked me off when she admitted that dairy is the #1 trigger).

Anyway, avoid dairy and glyphosate (pasta made in the US is another trigger for me as well as most scented items).

I also am medication free and only see my family doc once a year and my OB once a year. Prior to giving up dairy and pasta made in the US, I was going to over 20 doc visits and ER visits a year.

I love life again.

[Josie53 in reply to CINDY471]

Both are certainly worth a try, Cindy. Doctor hadn't mentioned elimination of any foods from my diet. Thanks for your reply.