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Botox Basics

Over the past few weeks, I’ve interacted with a lot of Migraineurs who are trying Botox for the first time. I started using Botox 3 years ago and find it essential in managing my Chronic Migraines. When I first started this treatment there were a few things that I wish someone would have told me. So I thought I’d share some of my insights with all of you.

  1. There are 31 Injections Sites all over your scalp. That seems like a lot of needles! If you are afraid of needles, ask the nurse to use a lidocaine cream on the injection sites about 10 minutes prior to the procedure to help numb the area. I go without, but the injections in the forehead and eyebrows hurt the most. The targeted areas are standard, however if you have TMJ or neck and shoulder issues, you can request that your doctor use some of the Botox in those areas as well to provide some relief.  I always try to get the doctor to give me some around my crow’s  feet, but he doesn’t. Hahaha!
  2. Give it at least 2-3 rounds of treatment before deciding whether it works for you. I’ve heard many stories of people who saw no relief after one treatment and quit. It wasn’t until my second time that I began to notice a huge difference. For some people it may take 3 tries. Just like with any new medication you start, you have to give it time to start working. Everyone is different, so don’t give up after one treatment!
  3. Botox can give you worse headaches and flu-like symptoms the first time. I seriously wish someone had told me that.  I went into my first treatment so hopeful that Botox is going to be the magic cure and then I walk out with an immediate headache. The pain, muscle aches, nausea and fatigue lasted almost 2 weeks. I thought Botox was supposed to cure all those issues, not make it worse! When you think about it, it makes sense. Botox is a toxin being injected into your system. Your body is working hard to fight against it, so it rebels. But after a few days your body adjusts and the benefits start to kick in. The next couple of rounds of injections may give you the same reaction, but after a while it lessens as your body gets used to it. I know it doesn’t sound like fun to potentially make your symptoms worse in the short-term, but in my experience it will wear off and you’ll get relief.
  4. Botox has a life cycle of its own and it can wear off. Botox works to paralyze muscles and nerves to provide relief. However, it is not a permanent solution. It can take a week or so for the medicine to fully kick in. And for some people the effects start to wear off before your next scheduled injections. Some people get full relief the entire 12 weeks in between injections. Over the years, I have personally noticed that I get the most relief during weeks 3-9. By about the 10th week into my injections, it starts to wear off and the Migraines become more intense and I’m counting the days until my next appointment. And then when I get Botox it may take 2-3 weeks before I feel the full effects.
  5. There is financial aid available to help defray the cost of Botox. Allergan, the manufacturer of Botox, has a financial assistance program that can be used when your health insurance doesn’t cover all or some of the costs. Information can be found here.

So with the downside of potentially giving you worse headaches to start, the medication not lasting the entire time, the uncomfortable needles and lack of immediate relief, why would someone want to do this again and again? Once your body gets used to the medicine, it can have a huge impact on your quality of life. For me, it may not last the entire 12 weeks, but when it is working I am able to be much more productive and social. And every person is going to react differently to Botox. After one treatment you may get significant relief and you may never have any unpleasant side effects. It’s a personal decision and choice to try Botox, I just want to be realistic about what can happen since no one ever told me it could take time for it to start working. Be patient and communicate with your doctor as you experience any side effects.

What would you share with others who are new to Botox?

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

  • Joleen1966
    1 year ago

    I’m glad to have the info on Botox. My new neuro has told me this will be the best course of acton for me and my chronic migraine. I had Botox once in the past and it did nothing for me. I’m hoping it will help progressively. Of course, we first have to get the preauth from the insurance. I’m not concerned as I’m on the same insurance as when I had it the first time around. I agree the shots to the forehead and temple were very painful. I HATE needles but I will suck it up if it will help me in the long run. Something has to work.!!

  • maureen52
    2 years ago

    I suddenly developed chronic migraine at age 62 after having regular migraines, occaionally with daily migraines for about 10-15 years but they did not control my life. Suddenly in December 2015, a switch flipped after major dental work and I had “transformed migraine” that would not go away. EVER. Eventually I had botox injections. The first one was pretty good. Of course I was not hopeless yet. I did not foresee how long this would last. So far, I have had 5 botox injections. The first 3 were fine. Brought my chronic migraines down to manageable migraines just as advertised although I did not stop with diet, exercise, depakote, nortriptyline and atenolol. Then in January 2017, something changed again. Despite my December of 2016 injection, I just statrted sliding back into chronic migraine so we stopped depakote, started topamax. In March, 2017 I got my 5th Botox injection but the slide is continuing. Topamax is not doing much. The depression is slowing my exercise from 7 days a week to 5 but still I am doing pretty well–still fighting the fog and working, but no social life to speak of and a real fear of foods. I am wondering if my neurologist who is skeptical of Botox and certainly does not inject on the scalp, does not believe in Cefaly, may not be the right Botox injector. I am a Kaiser/Permanente patient–a very large HMO that has no headache clinic. He says Neuro does not do any lidocaine or nerve blocks when I said “What’s next? If Topamax does not work? Where do I go from there? the anti-CGRP drugs are about 2 years away!” My pain is not as bad as some, for sure, but where should someone go ideally for botox because I am ready to go to someone for nerve decompression surgery!!!!

  • Katie M. Golden moderator author
    2 years ago

    Maureen52,
    When my migraine disease became chronic, Kaiser was my insurance company. All I can say is that it was not an easy process with them. However, I did have a competent neuro who was able to administer the standard Botox injections for migraine. You mentioned that you don’t receive injections in the scalp? That’s completely against the FDA guidelines for Botox for Migraine. There are 31 injection sites in the scalp focusing on the temples, base of the neck (occipital nerve), forehead, around the brow area and even in the jaw area. If you’re not getting injections in these areas, your doctor is NOT properly trained to administer Botox.

    Do not be afraid to ask for a second opinion. The Kaiser system can be complicated and when you’re really sick you may need help in advocating for yourself, but keep pushing them until you get the answers you deserve. There is no harm in asking for another neuro who is trained in Botox to administer your injections. Remember that you are in control of your health. It’s ok to ask questions or get a second opinion. You are your own best advocate.

    Let me know if you have any other questions. I want you to get the treatment you deserve!
    -Katie
    Migraine.com Team

  • nzandrea
    4 years ago

    HI,
    Really confused about what to do about Botox. Really need some advise. I had my first dose 3 months ago which made migraines worse for 2 months or so. Im now 1 week away from being due for the 2nd round of injections and not sure whether it is going to make things worse or not. I have been feeling great for about 3 weeks, surely the botox wouldn’t have just kicked in this late?
    It is an important decision because we are going on a big overseas trip in one month, if the second dose makes things worse again, it will be a miserable holiday.
    Or, has it taken 2 and a half months for the first dose to work – or the fact that Im feeling better because for the last 3 weeks I have been taking lots of supplements (B2, B6, CoQ10, Magnesium, Feverfew etc) and eating better?!
    Also, someone mentioned not to have a massage for at least a week after the dose…I did have an hour long neck/head massage within a week and wonder if that could have made things bad for me?
    Thanks for any advise! I have a couple of days to decide if I drive 6hrs to the neurologist for the next dose, or skip it!

  • cosmicbabe
    4 years ago

    I had 2 rounds of Botox for migraine last year, and I can’t say that it was worth it. There was no improvement at all during the first 12 weeks, and only perhaps a 10-15% reduction in frequency over the second 12 weeks. Considering that I have pretty good health insurance and my out-of-pocket co-pay was still $800, I couldn’t see continuing with the treatment to get such little benefit. Maybe if the costs go WAY down, I will give it another try.

  • Sara
    5 years ago

    Ugh to #3. I just had my first treatment yesterday. Of course I already had a raging migraine when I went it which made the shots hurt like heck (extra sensitive to touch and pain). Afterwards my head was raging and has been raging ever since. Nothing will stop it not even my rescue meds. It pretty much hurts in a circle around where the injections were but it’s more than just “surface pain” from the injections. Pretty much figured it was just the side-effect of having all those shots stuck in my head. Fingers crossed that it will be woth it in the long-run.

  • migrainestl
    5 years ago

    Thank you for this article. I go 8/26/14 for my 3rd dose. I can’t say it’s helping that much, maybe 10-15% improvement & I think I’m being generous… Your article & comments give me continued hope it will eventually be even better!!

  • bluesjr
    5 years ago

    Katie,

    My previous post was a little muddled – typical of my migraine years. Forgot to thank you for your article. What I also forgot to mention is that I think it will help people make the decision, one way or the other, to give Botox a try, then have realistic expectations when/if they do.

    I’m happy I finally got over the hump, as it were, and finally tried it. I had two neurologists and my primary care doc recommend it before I did. Botox, in combination with Trokendi XR (both high co-pays!) have given me some degree of my life back.

    Actually, while I’m at it, I should throw out a comment/advantage one doc mentioned that I think people should consider: Botox is not a systemic drug, its effects are local. Whereas Topamax/Trokendi makes my hands and feet tingle, makes me stupid(er) – brain fog or cognitive impairment would probably be more polite, drowsy, among other things. A lot of the migraine drugs have unwanted side effects, although the tingles seems unique to Topamax/Trokendi.

  • Katie M. Golden moderator author
    5 years ago

    Bluesjr,
    Very good point that the effects of Botox are local. No brain fog or tingling hands. Once you get over the initial hump of the injections and the immediate reactions, it gets much easier over time with less side effects than other drugs. Although sometimes you get more relief if you continue preventatives. You and your doc have to figure it out together!
    Thanks for your comments!
    -Katie

  • Ron
    5 years ago

    My doctor was able to get me into an Allergan trial of Botox. The trial was to ascertain the long-term effects of Botox. I read all of their documentation on long-term usage which brought up some major concerns. The drug has only been tested for a short period of time (less than 10 years) on people who need continuous injections on a quarterly basis. The long-term side effects which people experienced in their testing seemed very troublesome to me. I felt like I’d be a guinea pig, I would need to take Botox every three months with no end in sight and no true idea of the long-term effects.

    I decided to opt out of the Botox trial. Until Allergan (and the FDA) has a clear understanding of how the drug works, if it really works, and what injecting botulism toxin into your skull over a long period of time will do, I’ll stick to other less risky treatments.

    If you visit the Allergan website you can get some information on the short term side effects, but there’s not a lot of information about the long term effects. So use your own risk!

  • bluesjr
    5 years ago

    “When I first started this treatment there were a few things that I wish someone would have told me.”

    After reading your article I feel the same way, especially about your points #2 and 4. The first time I tried it, it did not seem to work. The 2nd time, still wasn’t sure. And it wasn’t until the 3rd, with careful diary keeping that I proved that it actually did help (although it wasn’t overwhelming), but that it took the full 10 to 14 days that the doc had been estimating for maximum benefit for me. Up to that point it seemed like I had just flushing money (and a lot of it!) for 9 months. We (me and the doc) notice the botox benefit wearing off towards the end of the 12 week cycle for me as well.

    Having the botox expectations set more realistically before I ever started down that path would have prevented a lot of disappointment as I struggled through the last 18 months or so, searching for a solution while trying various preventative drugs, ever more restrictive diets, etc.

    And I should mention that affordability was a stumbling block to even getting started. That was responsible for one year of waffling. I was on the fence to continue the treatment after I started for a long time, but finally with the results of this 3rd round of shots I’ve decided to stick with it.

  • Angiestl
    5 years ago

    I have my second appointment for Botox next week. I wasn’t sure I wanted to get it, because to be honest it stopped working after about a month and a half, and the headaches since then have been worse. But, I had immediate relief with the injections, especially with the neck and shoulder pain, which actually are just now starting to come back. So I think I’ll give it at least another go or two before I decide for sure. A friend also got them very recently, and she was beginning to get a migraine in the waiting room, but she said the injections stopped it in its tracks. I do believe for myself I will request more in the TMJ area, even though I haven’t been diagnosed with it. I get a lot of pain across my jaw, cheekbones and temple, so maybe getting the injections where the nerve starts will help.

    Also, you didn’t mention to not make major date night or social plans for a couple days after the injections. I had several bruises in the spots that bled more, and even a couple red knots on my forehead. It didn’t bother me since I didn’t have anywhere important to go, but I did go to the grocery store immediately after the injections and I felt like everyone was staring at the red dots all over my face. They were sore for several days after, but not nearly as much as the migraines I usually have. And the pain of the injections was somewhat severe for me, at least in a few spots, but again, still less than a full on migraine. I get injections in my spine with no numbing or sedation, so this was really pretty easy for me. I may go with the antianxeity meds before hand, or take a muscle relaxer before, I don’t believe I took either the last time.

    I’d love to hear some comments from people it didn’t work for, or that it lasted less time than for me. To hear the cons really, rather than just the pros.

  • Sara
    5 years ago

    Got approved today! My doctor recommended I have an infusion on the day of my treatment. I am hoping this will minimize the impact of any migraine that might result from the treatment.

  • Sara
    5 years ago

    Thanks Jamie! I appreciate hearing from everyone that it sometimes helps more with time and to stick with it, this is encouraging. I have my appt set for infusion and botox on August 22nd. I wouldn’t wish where I am on this journey on anyone, but I am hopeful that the Botox will be helpful. The last few months I can count my good days on one hand.

  • Sara
    5 years ago

    My “cocktail” is toradol, dexamethsone, depacon, magnesium, and zofran.

  • Nancy Stein
    5 years ago

    Botox for 4 years now…it helps considerably. Keeps me out of the hospital.
    Note to all; DO NOT get a massage for at least a week. Botox has to “set.”

  • nzandrea
    4 years ago

    Do you know why you shouldnt get a massage? Im wondering if that was why I got bad headaches and pain after my first dose (I had a head/neck massage within a week)

  • Anne
    5 years ago

    Didn’t mention that you get injections in your neck and shoulders as well as your scalp/forehead/temples. I’ve only done it once and am waiting for my next round. I found it to work well with no side effects – other than a weird, stiff forehead. I especially was helped by the shots in the shoulders – allowed me to lift weights without triggering a migraine. I’ve gone from chronic migraines to just about 9 a month in my first round (which is a huge improvement for me). I used a stress ball when the doctor does the injections because it hurt slightly but mostly because it felt disturbing – you can feel the cold liquid injected into you skin. Definitely worth it for chronic migraines.

  • debbiejones
    5 years ago

    I have been receiving Botox injections for 2 years now, it is the best thing that has ever happened to me. I can now say that my chronic migraines are controlled. I agree a lot with what Katie has said. I do know when the Botox is wearing off and is getting close to my next treatment. Fortunately, I have not had any negative reactions to it, I am not thrilled with the actual injections but I do it without any lidocaine cream. I just keep telling myself through the procedure that this is nothing compared to a migraine.

  • Mikey
    5 years ago

    I started Botox one year ago. I had horrible reactions after the first injection; one of the worst migraines I have ever had, severe neck and shoulder pain for three weeks. After each treatment, I get horrible migraines one to two weeks after injections, after one year this has not changed. The Botox only lasts for about eight weeks and the last four weeks (before my next treatment) are filled with moderate to severe headaches. So, needless to say after one year I am discontinuing the Botox.

  • Mikey
    5 years ago

    Not to mention, that twice I got black eyes from the injections

  • Patricia Aldridge
    5 years ago

    August 2014 will be my first full year of Botox and my Neurologist and I discussed it many times prior to me starting with it and I researched the side effects, however, I was not prepared with the side effects I had and have experienced. One thing everyone needs to know, is that every single person is different and they will have different reactions. There are some people who have minimal side effects and then you some that have the absolute worse side effects. And, everyone else falls in between. My migraines are in my right eye so my right side is so tender and is the most painful. I also suffer from TMJ. My face will swell up, my eye lids will close 3/4 of the way due to swelling, sometimes my forehead bruises, and my right eye will turn black, blue and purple. I have daily chronic migraines, however, with the botox, my severe migraines with non-stop vomiting have gone from 4 – 6 a month to maybe 1 or 2. So, to me, a long time sufferer (40 years), it is worth it.

  • Paintchip
    5 years ago

    Katie, I have been doing the Botox gig for about a long time now. I think I’m going on year 6 or 7 now. (I really should look this up again). The info you shared is good info for newbies to know as they enter into this treatment.

    One of the side affects I’ve experienced is the rebound headache on the day of and/or the day after I get my shots. I found it very helpful when we added a Toroidal injection at the end of my appointment on those days. I would encourage others to discuss this option with their providers if they are experiencing an immediate headache resulting from getting the injections.

    Thank you for sharing your thoughts. Hope you have another migraine free day!
    ~ Cindy/PChip

  • pjuliot
    5 years ago

    This is so helpful. I’ve been doing botox for 1 1/2 yrs now and actually just had it yesterday. Wondering if I’m nuts because I still get terrible headaches and sometimes a migraine for a few days after getting the injections. At least now I know it’s not just me. It has helped me from having daily migraines to just 10 or sometimes fewer per month.

  • Katie M. Golden moderator author
    5 years ago

    Cindy- that’s a great suggestion. Toradol will help to ease any inflammation caused by the injection sites.

    In the past, my doctor also recommended taking a valium beforehand to help with any neck and muscle pain.

  • Sara
    5 years ago

    Thanks so much for this Katie…anxiously waiting for my insurance to approve Botox treatment!

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