Botox Letdown (UPDATED 4/9/2020)

If you are new to Botox, as I was this past year; I learned a few things about the medication that 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)
  • Its EXPENSIVE and insurance will fight you to the death to not cover it!
  • The botox injections themself, 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 9–insurance will not cover you for your next treatment till week 12—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 that 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”–was 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!

Prior to moving to North Carolina, our insurance in Oregon REFUSED to cover botox as a viable option for migraine treatment (totally asinine in my opinion)! 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..seemed to help some but took FOREVER to kick in..I was basically on week 9 before I began seeing any noticeable differences in attacks. Plus, I had just been discharged from the inpatient program m, So my body was in a whirlwind of WTH shock—needing time to heal.

When I went to get my third round—insurance all the sudden denied me—which ensued a 4 month battle of obtaining approval. 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 6 months since my last treatment. My neck and shoulder muscles were like concrete…tight, achy and painful.

But being feeling as if I should give this a few more tries, I had my fourth treatment in Summer of 2019–it seemed to help—it did take a few weeks but I began noticing attacks where 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 8-9 started having “novocaine-like thaw out feeling”. Attacks started becoming more frequent and by the time I got to week 12 for my 5th 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 8-9 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 had my 6th round of Botox in January 2020 (nothing like meeting your deductible RIGHT at the beginning of the new year!). Overall it went very well–Im actually began to notice the small differences in my attack frequency and duration.

I will go for my 7th round of Botox on April 23rd and I have been experiencing the dreaded “letdown” for weeks now–My last round I had nerve blocks done at 4 weeks out from my Botox date and it did seem to help a little bit, but with the Corona Pandemic–this was not an option for me this round. So I have just been muscling through the attacks of the “letdown”.

I’ve put together a list of the top 5 symptoms I’ve noticed when the Botox began swearing off (listed below), as well as how I try to manage these attacks while I wait for my Botox appt. I recognize that 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!

My 5 symptoms of “Botox Letdown” and Tips on How I Try to Ease Them!

1). My temples become sensitive to touch– I find that they are especially sensitive during an attack. I have found that using my amethyst roller over these areas helps to relieve the pain, as does ice packs and a scalp brush that I use to massage my head and temples!

2). “Thawing out” feeling in occipital ridge area (at base of skull) —If you have ever had dental work and had Novocain it feels similar to this..but much slower and gradual—over several weeks. I have found that laying on my Pranamat (Accupressure mat) twice a day and laying on ice several times a day helps with this.

3). Attacks are worsened in intensity and duration– I find that as I grow closer to the Botox date my attacks are much worse. One way I try to combat this is take medication or rest AS soon as I feel an attack starting, and giving myself LOTS of GRACE during this “letdown” time.

4). Auras increase/hemiplegic attacks increase– during first several weeks after botox–all my auras seem to disappear. BUT as we creep closer to the 12 week mark and time for next round of treatment–I find that I have visual auras, tingling head and hemiplegic attacks (which are TERRIFYING). Stopping auras and hemiplegic attacks are nearly impossible- so again, I try to give myself LOTS of grace and not push myself during the “letdown” period.

5). Overall more tightness and achy in neck and shoulders (my problem areas)– Trying to stay ahead of neck and shoulder tension is always a fighting battle for me with attacks. During the time of the “letdown” I will be especially vigilant about foam rolling, stretching and using my acupressure mat. Epsom salt, magnesium flake and baking soda baths a few times a week also help with this!

2 thoughts on “Botox Letdown (UPDATED 4/9/2020)

  1. Amy January 20, 2020 / 10:49 pm

    Would you mind sharing what your new treatment may be? I’m actually going for my 3rd round of botox on Feb 5th. As of now the numbers have slowly declined however the length of my migraines have grown. I’ve tried everything else under the sun and I’m out of options. Even my doctors dont know what to do if the 3rd round doesnt help.

    Like

    • the_mindful_migraineur January 20, 2020 / 11:08 pm

      Hi Amy!

      My doctors plan was to try nerve blocks at week 9 to see if that would help
      Get me to the 12 week next round of Botox.

      I am also on a daily regiment of Methergine—which has been helpful and take injections of DHE If an attack starts to come on..I’m also on Ajovy once a month.

      At this point I am at a place that I am happy with progress (even though it’s been slow) and although I still live with a lot of attack days..I am so much better than I was a few years ago.

      My advice to you is to not give up..keep pushing, researching, and looking for whatever may help you—-I also did a 10 day inpatient program up in Ann Arbor, MI to try to diagnosis and get my train back on track—that experience was life changing for me…you may want to look into that…hope that helps!!!

      Like

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