The Good, Bad and Ugly of Botox Injections for Migraines

How many of you suffer from medication sensitivity? I know I do. Which has been part of how I ended up trying Botox for my chronic headaches and migraines. I have tried countless other medications, which either don’t work or have had violent side effects. So when my Neurologist insisted, for over a year, that he has great results from using Botox AND that in his ten years of using it, he hasn’t had anyone suffer adverse effects from it, I finally broke down and agreed.

I had my first round of injections in September and at my insistence, we did not do the full dose of 155 units, but instead did 100. I was rather surprised that the injections were not as painful as I had sort of scared myself into thinking they would be. It’s a pretty daunting thing to consider getting 31 shots into your face, shoulders and head. A few times, my Husband and I laughed at the Neurologist saying that the injections were no big deal, they only felt like a bee sting. To be clear, that’s 31 “bee stings” in your face, head and neck. But, they really weren’t that big of a deal. The Neurologist had a Nurse with him-as he pulled the needle out, the Nurse would apply pressure. Their systematic approach to it made the process unbelievably quick and the light pressure almost distracted from the prick of the needle going into the next site. I was pretty proud of myself when the Neurologist told me that I did phenomenally well.

After receiving the 2/3 dose, my head felt a little “full”. I know that’s a rather abstract description, but it’s about the most accurate I can come up with. I left without the ice pack they offered me and was pleasantly surprised that there was no redness or bleeding at the injection sites. For a couple days after the procedure, I was tired-which is no big deal, I pretty much walk around exhausted all the time.

To my surprise, I pretty quickly got some relief from near daily headaches and/or migraines, lessening them to 1 to 2 a week. The biggest surprise though, was relief from a different symptom; the electricity that courses through my body. Let me briefly digress here…….

One of my most challenging symptoms is something that still has no diagnosis and has differing opinions from my different providers. I get what feels like electricity coursing through my body. Have you ever accidentally gotten an electric shock? That course of electricity that zings you, sending something like a vibration through your body…..it hurts, it stings, it vibrates, it burns and it seemingly courses through every vein in your body. That is what it feels like. And it’s something no one can really determine the cause of. It’s been chocked up to Restless Legs Syndrome-which when it occurs in your arms too, is called Restless Limbs Syndrome. Except the Neurologist said the other day that it’s extremely rare to have it beyond your legs. It’s also been chocked up to being my Fibro. As of last Wednesday, we’re now going to dig a little deeper to figure it out, starting with an MRI of my neck. Regardless of what it is, this particular symptom often leaves me rocking back and forth, close to losing my mind. The combination of pain, burning and vibration brings me to the brink of crying most times, praying to get through it. We haven’t had much success in treating it, but I can sometimes get it to stop with a combination of magnesium cream, muscle relaxers and pain meds. Whatever it is, it’s one of the worst aspects of all my conditions. So to realize that the Botox somehow almost completely eliminated it was almost akin to a miracle for me. My Primary Care thinks it has something to do with the Botox lessening the constant firing of my Central Nervous System, but that’s just a theory. Theory or no, I’ll take anything that lessens that bitch of a symptom.

So when the Botox not only lessened the frequency of my migraines and headaches, but also the electricity, I was really excited that something was finally working!! 3 weeks later, I hit the proverbial brick wall and it all came back with a vengeance. We thought we would get three months relief out of the Botox. Instead, it was three weeks. After vicious nightly headaches and/or migraines, I was given another course of steroids. BUT this was hope and progress!!! If I got three weeks relief from 2/3 dose, then I may get 3 months relief from a full one! I counted the time until my next round of injections. Which were last Wednesday.

Wednesday evening came and Bri drove me the hour to the Neurologist. This time, using the full dose, the injections stung a little bit more and this time, I could feel the medication being injected. Coming out of the Neurologists office, my head felt much more full this time, almost heavy and left me a little off balance and out of sorts. While there was more redness around each injection site, it certainly wasn’t bad and we decided to take advantage of being out of the house and grabbing a few Christmas presents. Funny enough, once home, the “electricity” hit, leaving me begging for Bri to do something……I now wonder if that was a sign, I missed, of what was to come.

I woke up Thursday morning feeling beyond horrendous. I woke up with an awful sore throat, sick to my stomach, exhausted and feeling almost drunk. As the day progressed, my symptoms only progressed with it. I ended up in bed for the entire day. My sore throat worsened, my mouth got incredibly dry. I had difficulty swallowing. I was so nauseous, I was on the brink of throwing up. My entire body ached and felt like it had been hit by a truck. I was super exhausted, too sick to eat, extremely thirsty and by bed time, had a killer headache. After my initial positive experience in September, I was really shocked to be having such an awful reaction to the Botox this time. But this had been my concern all along. I have horrible sensitivities to medication.

For a year, my Neuro had pushed me to try the Botox. I had my first Basilar Migraine in 2010, initially appearing with stroke like symptoms. Since then, we have tried multiple medicines: Opiods, muscle relaxers, Epilepsy meds and Anti-Depressants. All have either been unsuccessful or have had nightmarish adverse reactions. So I knew we were at the end of our proverbial rope with migraine meds left to try. He said that he had great results from Botox and had yet to have any patient experience anything serious; although a few had experienced drooping eyelids. Except when I spoke with other people, I got a different story. I had multiple other people tell me that the Botox didn’t work, with one person saying that a friend had experienced paralysis in one of their arms. He further persuaded me that Botox is incredibly expensive and often times, difficult to get insurance companies to pay for. But I’d been approved. After a particularly bad few months of near constant headaches and migraines and a couple rounds of steroids to break that cycle, I finally relented.

Which is what all led me to here.

Friday morning, I woke up no different, except the difficulty swallowing became even worse. For some reason, that difficulty only compounded my dry mouth and horrendous nauseousness. And this time, I put in a call to the Neurologist. Their recommendation was to call 911. Oh come on!!!

Now normally, I listen to my Doctors. Except this time, I had two reasons to argue with them. 1. The Doctor had told me that if my eyelids drooped, there was nothing they could do, since there’s no anti-toxin to Botox. All I could do was wait for it to wear off 2. It’s Flu season. So really, what could the ER do for me, besides make sure my symptoms didn’t progress?? With that, I got the specifics about the treatment, just in case and had specific instructions that if the symptoms worsened or it became hard to breathe to call an ambulance. I hunkered back into bed and prayed it wouldn’t get any worse. I hate the hospital.

Today is Monday and I think I’m through the worst of it. The scariest symptom, the difficulty swallowing, has finally abated and it seems like I’m gaining a couple hours each day of symptom relief. Which is why I’m seizing the opportunity to write now. My sore throat is gone, as is the dry mouth, body aches and severe exhaustion. The difficulty eating and nauseousness comes and goes throughout the day-so last night we made some Chicken Noodle Soup.

I sometimes feel like I’m forced to play Russian Roulette with my health…… Now through this, if I do, in fact, get some relief from the electricity and headaches/migraines, will going through this again be worth it? I guess I’m not sure. What I/we are sure of, is that I will NOT be doing the injections in March, as it’s WAY too close to my Daughter’s wedding. And, that it may not be a bad idea to see the Allergist to see if we can determine if that was an adverse reaction or if it was an allergic reaction. I think it’s valid to get his opinion on this craziness. Ultimately, it comes down to if it will it work or not and what causes me the most suffering: Migraines and electricity or what I just went through. Why can’t my biggest struggles ever just be what to wear today?

Have you had Botox? Did it work? Did you have any side effects?

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Fighting with Fibro and Living With Purpose. Mom, Wife, Blogger and animal lover. Fighting with Chronic Illness on a minute by minute basis; sometimes winning.

14 thoughts on “The Good, Bad and Ugly of Botox Injections for Migraines

  1. Oh Stace!
    My but you have been through hell!

    I get the same electrical zaps. Everywhere in my body, including my head ( brain). The pain is indescribable. I can be sitting still and out of the blue I am suddenly screaming from the pain. It is like a lightening bolt. Doctors look at me like I am crazy when I describe this to them, so I gave up years ago.

    I have never had botox, but my best friend has. Ever since a hysterectomy 30 yrs.ago she has had bladder incontinence which has worsened through the years, and constant bladder infections. Like you, her doctor pushed for using botox for several years and in desperation she finally agreed to try it. The fist treatment really had no significant changes in her problem. Months later she got another treatment, again, no noticeable results. That was over 9 months ago and now she has to catheterize herself several times a day to empty her bladder!

    I really don’t feel as though they have the effects of botox down to an exact science yet!

    Praying you will feel better soon and be in good health for the wedding in March.
    Gail

    Liked by 1 person

    1. Hi Gail!! Merry Christmas and Happy Holidays!! It was a long week, I have to say. Ugh. I’m sorry you get the lightning too. I’m beginning to think, like you, that this is just going to be another symptom I never get answers to that I just have to toss aside. I’ve gotten pretty used to living without answers, I just wish something would relieve it-it’s truly awful.
      Speaking of awful, oh my goodness, your poor friend!!! That is alot to live with! I’m sorry she needs to deal with that.
      I agree, I don’t think they have it down to a science. I’ve learned, the hard way, to never go into anything blindly-so while he kept insisting it works for all of his patients and no one has ever suffered any adverse reactions, I knew that simply was not the truth. I’ve heard of several people who have had no success with it or have suffered some pretty crummy side effects. I’m on the fence about whether or not I’m angry with him……not that that will do much good, but it may force me to find someone else. It’s tough where I live to find good Providers and going the two hours into Boston is just an absolute nightmare for me. So we’ll see.
      Anyhow, I’m happy to finally be back on my feet and hope to now be able to enjoy Christmas.
      I hope you are feeling well ❤

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  2. First of all, Thank You for sharing your experience. The 2nd round you described is my fear. My pain management doctor has been after me to go back to a new Neurologist, my old one was a quack.
    I get the most horrible rash on my hands just using Sumatriptan( Generic Imitrex) . About the time I get my hands clear is about the time I break down and use the injection. The tablets and nose sprays do not touch my pain. Of course I am taking other medications as well for migraine which I have chronic daily migraine and fibromyalgia along with DDD Spine / arthritis. When I use Sumatriptan I immediately feel it go to my hands. My doctors have told me it’s a nerve problem as well. My fear is an allergic reaction to Botox or any CCRG med. My Mom was super allergic to many, many meds. My allergist said it’s hereditary. I keep praying for direction and reading on sites for more information. I just want help over fear. Again, Thank You.

    Liked by 1 person

    1. You’re most welcome.
      I feel like it’s something about Neurologists. I’ve only found one that I liked and he moved to Hawaii in 2012. I haven’t liked any of the ones I’ve seen since. I’m sorry you haven’t had much luck with finding migraine relief. I’m super, super fortunate that Fioricet works for me. So, at least I have that. But none of the preventatives have worked. Moreover, I’ve had some really hellish adverse reactions to them. I had hope for Aimovig-but I always wait for meds to be out for a while before I ever jump on board. But through one of my Twitter followers, I have found out that has really, really awful side effects too. It seems to be a lose lose battle. I’m finally back on my feet after pretty much a week. Neuro said it’s a cross between an allergic reaction and the Botox just relaxing the muscles (doing it’s job), in my face and neck-thus making it difficult to swallow. Now I’ll have to see if it actually stops the near nightly headaches and migraines, before I ultimately decide if it’s worth spending a week down for. Assuming it’s actually even safe. So that’s everything I can tell you.
      While sometimes it’s scary stuff, I tell people about my experiences so that they have more information for themselves. It makes me crazy when Doctors act like you’re a hypochondriac because you have valid concerns with medications they prescribe.
      You totally deserve help and relief. I’m sorry it seems like such a Herculean task to find either. I typically feel like I’m choosing the least awful choice when going on meds. I wish it weren’t that way. It sounds the same for you. I think having Fibro only complicates our already fragile systems too.
      I do hope you find something and if I can help, please let me know. Much Love, Stace

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  3. Stacey, I’m so sorry you’re struggling with this. I had one round of botox, which did absolutely nothing but take away my ability to make normal facial expressions. I have a friend who goes through a week of hell after botox, from the symptoms you describe, to severe brain fog. She says after the week of hell, it’s worth it. I hope that turns out to be true for you, as well. I’ve had more luck with verapamil and virtually no side effects from it. It doesn’t do anything for my neurological symptoms, though, such as my tremors, seizures, spasms and parasthesia (shooting pains & electric shocks). I use muscle relaxers and supplements to keep most of that under control. I’ve always thought these come from possible CCI, but nothing shows on standard mri. My last spinal tap revealed that I have spinal and/or brain inflammation along with a compromised blood brain barrier. Now my migraine doctor is sending me for a full MS work up. I have no idea if my intractable migraine is related at all or not. Anyway, I thought maybe some of this might line up with you and give you more to explore. I went through so many meds before verapamil. I totally get how awful it is to live with this pain.

    Liked by 1 person

    1. Super good to know on your friend with the Botox. I’m finally through it and yup, today marks one week. If it provides relief, then I will have to meet with Docs and make sure it’s safe to use again. But until I know if it even works, I’m not worried about that. My next appt was slated for March and with my Daughter’s wedding in April, there’s no way I’m risking anything. Thanks for letting me know!! I wasn’t familiar with Verapamil and was surprised-so I just looked it up. Now I know why. My BP is way to low to risk using any meds that lower it further. That combined with the Dysautonomia and I’d turn into Rapunzel. Although come to think about it, maybe if I turn into her, the migraines will halt? Hmmmmm.
      Yeah, Neuro is going to do a neck MRI. I’m assuming he won’t find anything. I’ve been checked for MS multiple times and now have yearly brain MRI’s, since I have a lesion. But they don’t think it’s MS thus far. It’s ALL so complicated and frustrating, as I’m sure you know. It shouldn’t be so hard to find answers and relief. But that’s ok. It could be worse. I’m just glad to be back on my feet again. Thanks for your help and suggestions, as always. I hope you’re holding up okay with going back to work. I’m still sending you strength and well wishes. Merry Christmas and Happy Holidays, Michelle!! ❤

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      1. Just so you know, I’m a tootsie, too. We had to adjust my meds some. Tge pressure in my head is very high, while the rest of my blood volume is low. My cardiologist threw fits when my neurologist did it, but I now have better control for both than ever. We just had to play with dosage until we got it right. It’s not something every patient is willing to do, but it turned out to be the best possible solution for me. Just don’t give up looking. I’m being evaluated again for MS, but I think I have CCI and always have. Just not prominent enough to show on standard MRI, which would explain my leaks and resulting high pressure. Certainly you could have something else going on. Wishing you luck with everything. I really hope you find a solution. Living with constant severe head pain was the worst.

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      2. LOL. I feel silly saying I don’t know what a tootsie is. But I love that word!! This is all really great info, Michelle!! Thank you SO much! Sometimes, it’s super helpful to get someone else’s take on something because sometimes you can’t get people (Doctors) to look outside their own hypotheses. I feel exactly like you said-like something else is going on, that they can never just get to the bottom of. So I push for answers, see all the Specialists, do all their tests and then I get tired and overwhelmed when they never find anything. I can only go through the cycle so many times. But it’s tough to live this way, too. I tried to go to Walmart alone yesterday for wrapping paper. It’s about 15 minutes away and only all back roads. It was terrifying and I won’t do it again, at least never again at night. At 45, simple things like driving should not be so challenging. And I shouldn’t always require my Husband to do anything or go anywhere. 🙄 But my head just isn’t right (physically, that is-mentally I may never have been right, LOL 🤣😉). My perception, spacial awareness and vision are skewed to begin with. But everything always comes out ok on the MRIs. So who knows. I may try again after the wedding, but for now, I have too many other things both health and life wise to contend with first. I’m glad you got a handle on at least the head pain!! And that you were able to find a happier medium! Sometimes, that’s all it takes. I’ll be praying for you about the MS. ❤️

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      3. ROFL! I must have gotten spellchecked! It was meant to say POTSie! Believe me, I get it. I’m constantly picking and choosing my battles and taking plenty of breaks in between. It really is all so exhausting and frustrating. I feel so many of these same things. Thanks, hon. Hope you enjoy your holidays as much as possible. xx

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      4. LOL. That one letter made a whole difference!! Maybe we should call ourselves Tootsies. I think that’s one of the best things about Blogging. We do “get it” and there’s relief that comes with that understanding. Thanks Michelle!! I hope you have wonderful holidays and your health behaves itself ❤️

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  4. oh my goodness, I am SO very sorry you are going through this hell! I have never tried botox, and for the very reason you listed. I am extremely sensitive to meds and I just don’t want to have a horrible reaction. Prayer sent up that you will feel “normal” soon.

    Liked by 1 person

    1. Thanks SO much, Wendi!! Yeah, it’s a little frustrating that the very reason I didn’t try Botox turned out to be true. If it works, it will be worth it, I think??? But unless it’s a miracle for me, I’m done. It seems to be a super common thread that we all have medication sensitivities-it sort of aligns with a short circuited nervous system, I suppose. Thanks so much for the prayers, I truly appreciate that. You all get me through so much, I couldn’t be more grateful <3. Sending you much love and many Blessings this Christmas season.

      Liked by 1 person

    1. My Husband, Bri, says the same thing. He swears the medications make me sicker than the actual underlying conditions. I have to agree. It comes down to which causes less suffering, in the end, I suppose. Not really a very fair choice. Thanks so much for commenting, Mark, Wishing you and Robin a Merry Christmas and Happy Holiday. I hope she feels well enough to enjoy it!! Love, Stace

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