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The First Week : Chronic Migraine and Botox Diary

After my injections we headed for the car and a seven and a half hour drive home. At this point I felt little difference than when I walked into the clinic about five hours earlier.

Some readers may be shocked at five hours time having elapsed for my injections. No, it didn’t take that long to do them. Since this was my first visit to this clinic, I saw several other departments — psychology, nutrition, physical therapy. This all took time.

I was on a bit of a high for the first few days after the injections. After all, I had waited many years to finally try this procedure which so many doctors had thought might help me. In my own mind, I had just stepped onto a new and wondrous path, and I was excited and anxious to see the scenery.

The first big change

My injections took place Monday. I did experience some itching where the injections were placed, which was only slightly annoying at its worst, but has continued. My sunglasses set on a place where I’d been injected, and eventually that began to feel slightly bruised, but I was ready for this easy trade-off. Other than that, it was at the end of the week I noticed my first big change.

Sunday morning when I looked into the mirror to brush my teeth, nothing seemed any different. However, when I looked in the mirror that night to brush my teeth again before bed, it was obvious that something drastic had changed. Yep, just that fast.

You see, I have always had a quizzical *Spock eyebrow* that raises on its own at times, often when I am either giving the “mom look” or have heard something dubious. Second only to my hair, it is the thing people remember most about me.

On Sunday night, I said goodbye to the ‘ol Spock eyebrow. It was gone. Surprisingly, I was sad. 🙁 Apparently I was more attached to my quizzical eye than I thought. I told my doctor in an email that you could paint me green and if it would make my Migraines better I’d walk around with a smile on my face!

Now, we are told in Botox workshops that the placement and dosage of onabotulinumtoxinA is different for chronic Migraine than it is for cosmetic purposes. Many people with interests in cosmetic improvement want botox around their eyes to help eliminate crow’s feet, or around their mouth to help with lines there. Because my doctor followed protocol, I had no injections around those areas. I expected some minor paralysis of muscles in my forehead near the injections, but was still surprised when it actually happened to me. I poked at my flaccid forehead and was slightly weirded out at the lack of response and mild rubber feeling. My forehead is oversized (read HUGE) and I am still left with obnoxious wrinkles in the middle that I hope someday might disappear too. Aaahh, isn’t it wonderful how hope springs eternal!

Coming Soon: Week Two – Unexpected Side Effects

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.

Comments

  • Nancy Harris Bonk moderator
    6 years ago

    Hi Caroline L –

    Thanks so much for sharing, Caroline. I did want to let you know a member in my migraine support group also had a similar experience with Botox. She was barely able to hold her head up either. She too had a neck brace, but on the other hand another member swears by Botox, says it has given her “part” of her life back.
    We all differ so much, you never know!

  • CarolineSwing
    6 years ago

    I hope it works for you!

    A quick word to anyone considering Botox: do NOT get it anywhere in your neck! Some of the worst pain and difficulty I’ve had with a migraine treatment was the Botox in several areas of my neck. Let’s just say that your head is very heavy and paralyzing some of those muscles makes the unparalyzed muscles work much harder. It was hell for almost 3 months. I could barely hold my head up and actually resorted to a neck brace (like the kind people sometimes use after whiplash).

    I have had Botox in my forehead and I liked that. I do think it helped a tiny bit. My very first time, they injected it into two areas of my forehead, both temples and the temporomandibular joints (TMJ joint – and don’t have Botox here either, ouch!). I have a big forehead too and I have several lines running across from my migraine face. What I noticed after several days were that the areas with Botox were very smooth and the areas without were still lined. It looked a little like this: = O = O = and it was kind of funny. I had a couple of friends who were mortified about the funny look. But I think you described it well, “you could paint me green and if it would make my Migraines better I’d walk around with a smile on my face!”

    The second time I tried Botox, I only did the forehead and I made a point of rubbing my entire forehead to “spread” it around a little and my entire forehead was smooth.

    Botox didn’t really help my migraines very much, at the time (2002-2005), I was having them every single day with an average of an 8 or more on the pain scale and none of the treatments I tried worked. Currently, I’m at about 27-29 days per month of migraine with the average daily pain at 6 ½ and up and 20+ years of chronic daily headache. I am considering retrying some of the treatments that didn’t work now that I’m a little better and Botox is on the list. I can’t wait to read your continuing updates.

    Good luck!

  • Ellen Schnakenberg author
    6 years ago

    Hi Caroline L – I’m so sorry you had such a rough start to your treatments. The most important thing I could impart to you at this point is that we are all different, and that although you had side effects potentially from the neck injections, those same injections may be a key for another patient that unlocks their suffering. I would encourage you to take a moment and read Part 2 of this series that discusses the pros and cons of injection placement: http://migraine.com/blog/the-injections-chronic-migraine-and-botox-diary/

    Spreading the Botox isn’t something we typically want to have happen. In fact some doctors will not dilute the serum per directions in order to try to prevent the spreading of the serum.

    As far as the pattern is concerned – earlier testing wasn’t as effective for patients, and it had a different pattern with fewer injections. The current pattern with 31 injection placements seems to be the key for most patients. So, if you’re not getting all the injections, that could be the reason that the protocol isn’t working for you. That said, some patients do just fine with fewer injections. It is all very individualized and there really is no way to know until you’ve tried it.

    I just hate to see patients give up on a procedure when it hasn’t been done *quite* as researched. People like you and I who have pain every single day need whatever few treatments we can get our hands on, so giving one the boot when it might have worked had it been done differently, makes me cringe just a little. I’m glad you haven’t totally tossed Botox off the list yet, just in case it might help you. My suggestion is to work to strengthen your upper body BEFORE going in for the injections. This may help to mitigate some of the painful side effects you experienced before.

  • Vicki
    6 years ago

    I would like to try Botox, but my insurance is not so great ($5500 deductible!) so I haven’t pursued it. I kind of think Botox was made with migraineurs in mind….I’ve wondered just which wrinkles in my forehead were from squinting and tensing up from pain, and which were from age!

  • Ellen Schnakenberg author
    6 years ago

    Vicki – Our insurance deductible is also very high, but when you consider that the cost of Botox is around the $2000 mark, it’s about like paying for 3 cycles and getting the 4th free 🙂 Okay, maybe not so easy, but hopefully you see my point. In my book, there’s not a whole lot that I wouldn’t give up to feel better.

  • Kara
    6 years ago

    I have had the botox treatment twice so far and have not had any success. In fact, the second time that my neurologist did the injections, my migraine got a thousand times worse. My neurologist wants me to try it three times before we stop the treatment. She states that for most people, the botox does not start helping until the 3rd set of injections. I am not bothered with my eyebrows and forehead not moving much. I continue to get severe pain in my neck and shoulders despite her doing some injections there both times as well. I will just have to see if the third time works or if I am just not a candidate for the treatment. I will see soon enough.

  • Ellen Schnakenberg author
    6 years ago

    dragonsflight23 – I am so sorry you have not had any response so far. Please do let us know how things go. When are you due for your third set of injections?

  • Cindi
    7 years ago

    I’m right behind you Ellen… first botox treatment yesterday. I felt some brusing on my forehead but could not see anything. Did you get “shot up” in the TMJ area? That was probably the part that stung the most but didn’t last at all. Because of the dystonia, I got more shots in my neck and shoulder area. This morning a new weather pattern is moving in and so far I feel okay, praise the Lord! I cannot report anything about my forehead yet… it moves freely with my eyebrows. No rubber feeling. Did you doc do your shots along your hairline? Mine did. Other than feeling sleepy (its dreary) so far all is well in my head!

  • Ellen Schnakenberg author
    7 years ago

    Yep, got the hairline shots and although I’m not positive exactly what you mean by TMJ area – I did receive some around the top of my ears which affect some of the minor muscles that are involved in jaw movement. The beginning of the second week is when I really started noticing big changes. Hang in there and let me know when you start noticing anything!

  • Lynda Hillebrenner
    7 years ago

    Congratulations Deb, I can’t wait to see how Botox will work with me. I cannot take any preventative or abortive medications for migraines, so this is my next best chance. I hope the wonderful response you have had. I won’t miss the wrinkles in the forehead, altho I am a very expressive face communicator, and use the raised eyebrow when I question or an irritated with someone. Maybe not being able to do so will be a good thing. Anyway, Congratulations!!!

  • Ellen Schnakenberg author
    7 years ago

    Lynda – Please keep in touch and let us know how it goes with you.

    If I may – why are unable to take any preventive or abortive medications? Some people are allergic to one or two, or sometimes have serious side effects or contraindications that prevent them from being able to take a few, but the list of possiblities is so long it would literally take 25 years or more to try them all. This makes me concerned you might not be seeing a doctor that is best able to help you.

    Like you, I am very limited in my treatment options, so I tend to befuddle my docs. As a result, I drive a long way to see a board certified Migraine and headache specialist (who also happens to be a neuro as well) and my tool box has now expanded exponentially. Here is a link to lists of board certified specialists that might be a better choice for you. http://migraine.com/blog/looking-for-a-migraine-specialist/ I hate to see any patient hang their hat on a single treatment, because if that treatment doesn’t work, it’s easy to lose hope that there will ever be a better life for them. I don’t want that for you <3

  • Deb
    7 years ago

    Just goes to show how variable patients’ reactions to the same migraine treatment can be. What works for one may or may not work for another. That’s a challenge I’ve faced since treatment first became available.
    My Botox experience has been very different from these postings. I used to get migraines 2 or 3 times a week. Although Maxalt got rid of them I still had to be constantly vigilant so that I could take it as soon as I felt a headache coming on. If I waited too long, I had trouble getting rid of them.
    Then came botox. It has literally changed my life. First of all, I’ve never had any annoying side effects – major or minor. Just after I have the injections, I have little lumps at the injections sites, but they go away after an hour or two. The biggest side effect is that I now have a nice, smooth forehead. Cool.
    The effect botox has had on my migraines has been unbelievable. As I said, I used to be a 2-3 times a weeker. After my first botox treatment, I went down to 2-3 times a month. Afer my second or third (can’t remember now) it was down to 1 in 3 months. With my last treatment, I have not had a headache in over 6 months! It’s been 30 years since the last time that happened. As a fellow sufferer, you can imagine how that has improved my quality of life. Even if I did have negative side effects, it would be hard for them to be worse than the migraines.

  • Ellen Schnakenberg author
    7 years ago

    Congratulations on finding a treatment that has been so impactful on your life!! I hear from a lot of patients that consider their Botox treatments to literally be a miracle for them. Not everyone is the same though. I had no idea what my experience would be like, but I prayed for that miracle. So far, no miracle. But things are looking up 😉

  • Judy Hintz
    7 years ago

    I stumbled onto this site! I too had chronic migraines for years. After some success with botox…I had migraine surgery at the Midwest migraine center. The results have been so great that I actually forget I ever had migraines. Highly recommend this.

  • Ellen Schnakenberg author
    7 years ago

    Thank you so much for your comment! The funny thing about communities like this – the people who comment usually aren’t those who have had success, because they aren’t necessarily looking at Migraine information anymore! So, your comment is really important, because it reminds people that there is hope out there for all of us 🙂

  • Suz
    7 years ago

    I had my injections about 5 weeks ago. I unfortuately ended up with a big bruise in the middle of me forehead for about 2 weeks. Other than that I loved seeing my forehead wrinkles disappear but having trouble raising me eyebrows was disheartening (I’m an eyebrow person)but a small price to pay compared to the bruise which embarressed me. I was told it could take up to 2 weeks for the full effect of the botox. As the weeks pasted by I did notice the effects of the botox more; less wrinkles and no movement of the eyebrows. Let’s not forget my migraines have been less severe and less frequent. Winter is usually my best time of year migraine wise but I am noticeing a difference. I hope the good effects continue to grow as I continue with the injects which I plan to do. 2 migraines a week is much better than 5. Good luck!

  • Ellen Schnakenberg author
    7 years ago

    Woo-hoo!! Success!! I am so happy for you! Let’s hope it just keeps getting better!

  • jo17151
    7 years ago

    My brows seem to be a surprise after each set of injections. First they were slightly droopy, second they were “surprised” and this third time it was split – my left was droopy and right “surprised”. I parted my hair to the side and told myself that the side part and hair flopping over the “surprised” brow would make it less obvious.

    I am at week #6 and the difference between the brows is hardly noticeable.

    On the plus side, I’ve noticed the lines between my brows were not as prominent after injections 🙂

    I’m looking forward to reading about your unexpected side effects. Decrease in appetite is something I’ve experienced – either that or maybe since I’m not either in the midst of a migraine or recovering from a migraine I no longer crave comfort food/soothing snacks.

  • Ellen Schnakenberg author
    7 years ago

    jo17151 – It’s funny that you mention the decreased appetite. When I’m Migraining badly, I usually don’t want to put anything in my stomach for fear it will come back up, but when the nausea dies down a bit, I do tend to try to put food in my stomach in hopes it will help. We’re all a little different. Decreased appetite isn’t on the list of usual side effects, but I think you might really be onto something re: the change of habits you have experienced. Keep in touch and let us know if this symptom changes at all.

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