What I’ve Learned from 20 Years of Botox

By Holly Harding

1 min read

As one of the first people to use Botox for migraine, Holly offers her unique perspective in this video. From frequency, to efficacy, to challenges and positives, Holly gives her real-world view on what Botox is like.

If you have any questions about Botox or would like to offer your experience from using the treatment, please do so in the comment section below.

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.

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azreynolds Member
<inline-mention username="Holly Harding" user-id="3755969"/> , Funny how our experiences resemble each other so often. My first botox injections were with a new neurologist who was also learning how to do botox about 20 or 21 years ago. He told me they were supposed to throw away the leftover botox after they did the 37 injections recommended at that time (they used 1.5 bottles), but since I had neck problems, he wanted to experiment with injecting my shoulders too. I noticed an improvement for about 3 rounds, but decided to stop after 9 months because I noticed a headache that felt like I was wearing too tight of a hat since I couldn't move my eyebrows AT ALL For the huge expense of botox at that time, it just wasn't worth forking over so much money for the level of relief I was getting. It took another 10 years before I gave it another chance. A new neurologist kept asking me to try it again... year after year. He promised he could reduce the injections in my eyebrows so I would be able to move my forehead a little. When the anti-CGRPs came out, he begged me to try those in addition to botox as part of a multi-level approach. Of course Medicare wouldn't allow both, so my doctor helped me get the Amgen Safetynet Foundation to provide Aimovig for free, and Medicare would cover the botox. But knowing that migrainures like us, having had migraines for 4 or 5 decades, he wasn't sure how I'd respond to Aimovig since they don't use people like us in their clinical trials. I guess we make their products not perform too well. Lol. Anyway, he asked that I commit to a full year on both products, which I did. Sure enough, it took 2 years before we saw a marked improvement, dropping from my normal 24-28 days per month down to 20 days. Then as you know, my binasal occlusion glasses helped cut my days by another 8-10. Recently my doctor asked if we could experiment again and stop botox to see how Aimovig alone would work for me. The migraines increased back up by 5-7 days, and the intensity went from level 5-6, back up to 7-8. On my pain scale, 9 is the inability to speak or move, and 10 is unconscious, so level 8 is pretty debilitating for me, locking me away in the dark on pain pills. So last week we went back to adding botox back in the arsenal and I am hoping to shave off some days again. So many people worry about the pain of the injections and they really shouldn't. Even with fibromyalgia and my hypersensitivity to pain, I find it is worth the discomfort of the tiny injections to get the final results I get. I imagine I will stay on botox from now on. Oh, I notice my botox lasts right about 11 weeks, so we've kept with doing it every 12 weeks. Love the look of your new house! Very homey!
1. Holly Harding Moderator & Contributor
 <inline-mention username="azreynolds" user-id="3677307"/> This is so helpful, Annzie. Your description of the journey of trying to add various treatments- navigating healthcare and insurance systems while also dealing with severe pain - is one to which we can all relate. And the constantly moving target of migraine. And the biggest lesson of all: that there is no one cure- but rather a combination of treatment strategies that helps to reduce pain and frequency of attacks. This is such a perfect example of that reality. And THEN the ongoing reality of having to re-evaluate once we add something new, should we take something old off so that we don't have an unnecessarily heavy load of treatments we are taking? On with our guinea pig status, right? I'm in that same place, considering letting go of Topamax after having taken it for so many years but I'm terrified of rocking the boat. So glad you've found such a good combination that works well for you (relatively!). I'm sure someone else would cry having to live with your frequency and level of pain- but to you- after all you've lived through- you're grateful. Amazing. Sending love and thanks, about the house. I'm loving it!! I found a kitten last weekend- seems like it may be staying on....My Gracie pup is not so sure about it. Warmly- Holly <a href='http://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team.
2. Melissa Arnold Community Admin
 <inline-mention username="Holly Harding" user-id="3755969"/> So glad you're happy in the house and that this kitten has found you -- a new friend for this new season. It's been almost a week, did you keep it? I'm dying to know! -Melissa, <a href='http://migraine.com' target='_blank'>migraine.com</a> team
Rebecca C Moderator
Very informative - ty <inline-mention username="Holly Harding" user-id="3755969"/>. I have been considering Botox treatment. Unfortunately, I have to run through the primary recommended treatments first that insurance tells me to, currently Emgality injections, but it is on my radar for my treatment in the future should nothing help my migraine disease. Ty for such a great video. Rebecca (CCM & Advc) 
1. Holly Harding Moderator & Contributor
 <inline-mention username="Rebecca C" user-id="3677527"/> Interesting- I do think your doctor can override that insurance protocol if s/he deemed it necessary/important enough. Might be worth a chat. I'm here should you have any further questions- you can DM me anytime. All the best- Holly.
2. Rebecca C Moderator
 <inline-mention username="Holly Harding" user-id="3755969"/> Thank you! This neurologist is new to me as a physician. I see him soon after imaging of my head and neck comes back. I also dug up past treatments and think I can submit this as evidence my migraines are hard to manage. Plus I may be able to treat 2 conditions with botox - neck pain and head pain if I can get my PM&R physician on board with botox (inflammatory arthritis/OA/RA/fusions/TMD/radicular nerve pain). This may help me get botox easier. Thanks for being available for my question. May take you up on that offer in the near future. Warmly ~ Rebecca
Melissa Arnold Community Admin
Holly, what a neat thing that you were likely among the first to get Botox for migraine. Imagine the ways your experiences -- even the bad ones -- have made a difference for other people who have come along seeking Botox after you. Allow me a minute to shout into the void: I know our members have talked about it countless times before, but I am so sick for all of the many, many people out there with Medicare who are locked out of these savings programs. It's not fair, especially given that people on Medicare are usually on fixed incomes and need the help even more. I find myself worried for my loved ones who are getting on Medicare now. They are healthy now, but what about the future? It's endlessly frustrating. -Melissa, <a href='http://migraine.com' target='_blank'>migraine.com</a> team
1. Rebecca C Moderator
 <inline-mention username="Melissa Arnold" user-id="3827796"/> This is happening to me as I am on disability, but have health insurance as my primary. I am locked out bc I get the benefit (rarely if ever use this) of Medicare (secondary insurance). So I am thinking botox is out as a treatment for me. Even the Emgality will be expensive which I currently am taking - may need to stop this as well. Looks like triptans are my best bet so far. I hope the legislation for a cap on prescription drugs goes through for Medicare <a href='https://www.reuters.com/world/us/landmark-us-healthcare-bill-sets-stage-lower-medicare-prescription-drug-costs-2022-0😧9/' target='_blank' rel='noopener noreferrer ugc'>https://www.reuters.com/world/us/landmark-us-healthcare-bill-sets-stage-lower-medicare-prescription-drug-costs-2022-0😧9/</a> Warmly ~ Rebecca (CCM & Advc)
2. Melissa Arnold Community Admin
 <inline-mention username="Rebecca C" user-id="3677527"/> I hear you. I'm not on any meds with saving plans, but I have Medicaid as a secondary insurance -- I qualified automatically for it because I'm disabled. I've only used it once when I was in a bind ... but I wonder what it would be like if I ever needed prescription support. Not great, I bet. Hugs to you! -Melissa, <a href='http://migraine.com' target='_blank'>migraine.com</a> team

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