My Botox Experiment

Summer_2012

Pinch, poke, ow. Poke. Ow. “All done!”

In the summer of 2012 I got my first Botox injections.  In a matter of minutes around 150 units were now semi-permanently under my skin. My headache specialist said it could take 4-6 weeks to feel any effects. And after that, if I didn’t feel any benefit, I could still see improvement in the second or third round.

I left the office that day, fingers crossed.

The migraines persisted, and we made some medication adjustments. But by the second round I was feeling relief. I still don’t know if those improvements were more due to the medication adjustments or the Botox. I do know that Botox lowered my pain levels of many attacks. Slowly I began reclaiming my life and my health.

Fall_2013

In the fall of 2013 I moved and found a new headache specialist in my new area. I explained that after a year of receiving Botox I had gradually seen improvement. So I asked about stopping Botox. I didn’t want to take a medication if I no longer needed it, and was concerned about the possibility of long-term side effects.

As a patient, I have found slim resources on how long someone should receive Botox for chronic migraine or how a patient knows if they still need the injections. One source, a FAQ published by the American Headache Society, states: “In clinical practice, it appears that some patients receiving Botox-A will improve to the point where injection therapy may be discontinued without relapse to chronic migraine, but as yet, we lack the means to identify those patients in advance.”1 Though I was partially flying blind, my instincts told me I might be one of those patients. When looking back at a list of old challenges I could tell that I was improving.

Luckily my headache specialist seemed experienced with my question. She suggested that in 2014 I start extending my treatments from every three months to every four months. I would keep a headache diary, and the majority of the responsibility was on me to tell her how I was doing.

Poke. Pinch. “Keep in touch.”

Spring_2014

Spring 2014—On the first try I was doing great until the last two weeks before I was scheduled to get Botox—I started getting more frequent and severe attacks. By the time I was sitting in the chair in my doctor’s office, I was more than ready for the injections.

We kept on the 4 month schedule all year and the next two rounds went fine.

Poke. Pinch. Wait…

Poke. Ow. Wait…

 

Winter_2014

In December 2014 we reviewed my headache diary. Despite the initial hiccup, my frequency and severity was lower and I was less susceptible to triggers. She said to me: “We’ve converted you from episodic to chronic!”

We planned to extend the treatments to every 5 months, and despite my impatience I agreed.

Wait… Wait….

Spring_2015

At the 5-month mark I emailed my doctor telling her I averaged 2 attacks per month. I asked for the ultimate test—to extend the injections three more months (so 8 months total) to give it time to wear off completely. She agreed, and told me she was glad I was doing so well.

Summer_2015

Close to the 7-month mark I started to feel the Botox wear off. My migraines were slightly more frequent (about 3-4 a month) and more painful. However, I was nowhere near the level I was before I started receiving Botox. It was more like my migraine frequency and severity before becoming chronic. Except now I had access to abortive medications and a toolkit to help me stay feeling better.

No more waiting, I decided. I’m done.

I asked my doctor if we could cancel my scheduled injections indefinitely. She agreed, and now I am going on 8 months Botox free. The other day my husband saw my forehead wrinkle up with a laugh for the first time in three years. He kissed my forehead.

I smiled.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
  1. http://www.americanheadachesociety.org/. Botox-A for Suppression of Chronic Migraine: Commonly Asked Questions. 2015. Available at: http://www.americanheadachesociety.org/assets/1/7/Botox-A_for_Supression_of_Chronic_MIgraine_April_2012.pdf. Accessed August 29, 2015.

Comments

View Comments (10)
  • Bobbie
    4 years ago

    Thanks Lisa.

    Bobbie

  • Bobbie
    4 years ago

    I am scheduled to get Botox treatments Sept 30, finally! How did you feel on your way home from your appointment? Just curious. I haven’t even had my consult yet. Very curious. Thanks, Bobbie 🙂

  • labwhisperer
    4 years ago

    I am getting my 3rd round in a couple weeks. I drove to work right after. I noticed some results with round 1. Round 2 really made a difference! I have only had 3 migraines in the past 8 weeks. The migraines are much less severe and respond quicker when I take my triptan. I feel like I’ve gotten my life back!

  • Lisa Robin Benson moderator author
    4 years ago

    Hi Bobbie,

    First of all–good luck! I hope it helps you!

    To answer your question I’ve always felt fine to drive home (or take the subway when I lived in the city). I felt sore but nothing compared to a migraine. I have gotten Botox and driven to work and functioned fine at work that day too (again not like trying to function at work with a migraine which is much worse!). Once in awhile it triggered a migraine (or I just happened to get one that day). So I always have my meds on me as usual. I would recommend though that until you know how you react to have someone who could drive you just in case and maybe take the day off work if you can.

    Wishing you the best!
    Lisa

  • Boudica
    4 years ago

    I am so happy for you that you are feeling better!
    Did your tiredness disappear with the botox? Just asking because I am tired myself, but I am thinking that this has to do with the medications probably.

    I am getting botox as well. Five years now, and I don´t care if I die tomorrow of side effects or if it´s poisoning me and I get ill later on or something..! I can truly say that I count my life as the day before and the day after I got botox. It was a turning point. Still really tired tho.

  • MigraineSavvy
    4 years ago

    OMG! You are so brave. And thank you for sharing your long process as I would like to eventually wean off it if possible here in Australia too. No doctor to help with it though. Just the Botox Specialist hours away … I have been putting this off for years. It’s time for more pain relief and less pills (20 per month). Thank you, thank you, thank you. Now you can love your wrinkles too.

  • Lisa Robin Benson moderator author
    3 years ago

    Good luck, MigraineSavvy! Also thanks MS and Boudica for sharing your experiences in Australia. I hope you both have better options in the future.
    Be well,
    Lisa

  • Boudica
    4 years ago

    I had to travel across half the country by plane to get it the first two years. It was long days, maybe 10 hours back and forth + the wait for the planes. It was worth it for me, but ofc the trip was really really exhausting.
    I hope you get the help you need, all my best wishes for you.

  • Nina Rose
    4 years ago

    Were you not terrified of not having anything to protect you anymore?! I’ve only had three rounds of botox so far but it has been my life saver and I’m back at university and everything! I’m always so relieved to get the next round because each time I improve even more but I couldn’t bare it if it all got reversed again :/ I admire you for having the courage to do it! 🙂

  • Lisa Robin Benson moderator author
    3 years ago

    Hi Nina,
    Awww, thank you for your kind words. You are so sweet.
    I was scared, I’m not going to lie. I still am scared that I will get sick again the way I was. So I tried to think of it scientifically. I was improving so I knew I could slowly try to go off of it.

    It sounds like you’re doing well, and if you are seeing continued improvement with each round, I’d say keep going for now! I’m so glad you found a treatment that helps you! My article was just one experience, and it’s different for everyone. Keep tracking how you are doing, and keep the dialog open with your doctor.

    Be well,
    Lisa

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