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What I Wish I Knew About the 'Botox Letdown' Before Starting Migraine Treatment

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Editor's Note

Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

If you are new to Botox, as I was this past year, I learned a few things about the medication I thought would be helpful to share with my fellow chronic community.

Either it works great for you or it doesn’t! (Common theme amongst migraine treatments.) It’s expensive and insurance will fight you to not cover it!

The Botox injections themselves are a little painful, but the migraine I get afterwards is the worst. For some individuals, such as myself, Botox begins to stop working around week nine. Insurance will not cover you for your next treatment till week 12, so for three weeks you are in migraine hell.

If the medication works for you (yeah!), over time it should help you more as it builds up in your body.

The letdown weeks are horrid — I had no idea this was going to happen. For three straight weeks I was in an awful migraine attack cycle that could not be broken. But my doctor and I may have found a solution for that. I’ll keep you posted!

The elusive “Botox letdown”— is not something that was covered or discussed with me prior to beginning the treatment. If you are new, or are considering this as a treatment option, I would encourage you to discuss this with your doctor!

Our insurance in Oregon had refused to cover Botox as a viable option for migraine treatment! But when we moved to North Carolina, I discovered that it was covered by our insurance company (with strings attached of course). My new doctor believed I would be an excellent candidate for it, so after months of paperwork and bickering with insurance I was on my way to trying out a new tool.

My Experience

My first round went awful; I was in such a bad state from the unknown spinal leak that nothing you threw at my body at that point was going to help it until the leak was fixed.

The second round went OK. It seemed to help some but took forever to kick in. I was basically on week nine before I began seeing any noticeable differences in attacks. Plus, I had just been discharged from the inpatient program, so my body was in a whirlwind of WTH shock — needing time to heal.

When I went to get my third round, insurance all of a sudden denied me. A four-month battle of obtaining approval ensued. At this point, I was considering driving to Canada or Mexico for the drug. I was feeling desperate — which is a terrible feeling when in intense pain. It. was. bad! But I had this tug at my heart that told me to keep trying. So I pushed forward.

Finally, insurance approved me for my third round, but at this point it was as if I had come back to square one. It had been over six months since my last treatment. My neck and shoulder muscles were like concrete… tight, achy and painful.

But feeling as if I should give this a few more tries, I had my fourth treatment in the summer of 2019. It seemed to help. It did take a few weeks, but I began noticing attacks were shorter and less intense — a win in my book! Progress!

As time crept closer to my October treatment, I began to notice that my neck and shoulders at about week eight to nine started having “novocaine-like thaw out feeling.” Attacks started becoming more frequent, and by the time I got to week 12 for my fifth round of Botox my body as in full attack mode — and had been that way for several weeks.

After a chat with my doctor we decided to add in a nerve block at week eight to nine to see if that would help extend the effectiveness of Botox. Because it’s clear it’s working, just need it closer together than 12 weeks — but guess what insurance is won’t cover it (shocking)!

I will go for my sixth round of Botox on this January (nothing like meeting your deductible right at the beginning of the new year!).

I’ve put together a list of the top five symptoms I’ve noticed when the Botox began. My hope and prayer is that this next round with the added nerve blocks at week nine will give me the coverage I need to get me to a place of better management. I recognize everyone’s situations are different, but felt that a list of symptoms could be helpful for someone like me who is a bit of a newbie to Botox!

Five ways I’ve noticed the “Botox letdown”:

1). My temples become sensitive to touch (ouch)… especially during an attack. Using my amethyst roller helps, as does ice packs!

2). The “thawing out” feeling in the occipital ridge area at the base of skull, over several weeks. If you have ever had dental work and had Novocain it feels similar to this, but much slower and more gradual.

3). When having an attack, they are increasingly worse in intensity and duration — Yeah!?

4). Auras and hemiplegic attacks increase. During the first several weeks after Botox, all of my auras seem to disappear. But as we creep closer to the 12-week mark and time for the next round of treatment, I find I have visual auras, tingling head and hemiplegic attacks (which are terrifying).

5). Overall more tightness and aching in my neck and shoulders (my problem areas). This is where my tools of the acupressure mat, foam roller and epsom salt baths can be extremely helpful.

All in all, I would encourage others with chronic migraine to at least give Botox a try. Yes there are a lot of negatives, but there are also so many positives. During the weeks when the Botox is working, I have less frequent and less intense attacks, am able to be a more present mom to my toddler and feel more like a human than any other medication or treatment I’ve tried. So I will endure the insurance battles and painful three-week letdown period if it means that I can feel more like myself for a nine consecutive weeks.

Living with chronic migraine is tough, so we have to take the wins when we can — and I consider Botox a win for me.

Follow this journey on The Mindful Migraineur

Getty image by g-stockstudio

Originally published: January 21, 2020
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