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First Time Botox Fiasco

  • By Autumn Sparrow

    Yesterday I received my first round of Botox, for migraines and my eye spasms and it left me a little freaked out.

    I woke up with a slight headache yesterday and took some Aleve, my dystonia was also flaring and I was having trouble with my hands, and the zaps were back in full force. I didn’t care I was ready for anything that might offer relief.

    By the time I was about to get the shots the cute little headache had me in tears pressing my head against the office wall. I’d asked the receptionist if I could reschedule but she kept insisting the dr would see me soon…

    So he did my eyes first, then 2 quick jabs to my temples. It hurt but was a welcome distraction from the headache that was brewing. The 3rd prick was in the back of my head… and I felt a zap so intense it threw me out of the chair.

    The Dr asked if I was all right, said we were done. Looked at my regular neuros notes and asked when I had my last MRI. I knew what he was thinking as MS keeps coming up so I told him I was scheduled for an MRI today although my lumbar punch in December was clean. He said he wanted to see me in a week and to bring the MRI films not the cd.

    Since this was my 1st time I really have no idea if this was normal or not.

    I’m baffled that we were done at 3 injections. A few people in my dystonia group think he may have hit a nerve, which is possible although I’ve experienced that with ESIs in my spine although it was a much sharper jolt.

    I’m also a little freaked out that he wants my MRI films next week.

    I had to move my MRI back as this migraine won’t quit and I knew I couldn’t handle the noise.

    Thoughts? I’m new to this (Botox) and don’t know what’s normal.

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  • By Nancy Harris Bonk Moderator

    Hi Sparrow,

    Ugh! I’m so sorry you’re first experience with Botox was not great. I’ve honestly not heard of a doctor stopping after 3 injections, but that doesn’t mean it hasn’t happened. I am glad he wants to see you in a week, and hopefully go over things with you. May I suggest you write your questions down before you see him, that way you won’t forget what topics you want to cover. When I bring my list of questions to my doctors appointments, I’m more focused and can get what I want accomplished. One of the first questions I would ask is: why did you stop and why did it hurt so much?

    I wish I had a better answer for you. Please let me know how you make out after your appointment.
    My first Botox is next Tuesday….

    Nancy

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  • By Autumn Sparrow

    Thanks, Nancy. I’ve been getting migraines & Icepicks 27 days a month (not MOH) so my brain isn’t processing things as it normally would. Your response was really helpful, thank you! Since he’s not my normal Neuro I didn’t even think of that. Good luck on Tuesday & I’ll let you know how it goes.

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  • By Autumn Sparrow

    So I failed on making the list. I’ve had a nasty migraine that’s kept me from eating, etc for days now… I almost wish it would spike to a 9 so I could get a shot.

    I lost track of time this morning and had to rush to grab the MRI films before my appointment…. Excuses Excuses!!!

    After looking at MRI he showed me some bright white spots that he thinks are scars left from migraines. He basically said we have to get them under control or else. Then reviewed my meds and realized I’m on 4 preventatives (not including Botox), and said we are doing everything possible. Then repeated we have to get them under control.

    He said we wouldn’t do more injections until the next scheduled round. I’m wondering if it has to do with the injections to my eyes… From what I’ve read they limit the total amount given at one time…

    I sat there thinking that I’m grateful he’s just the Botox Neuro.. July I had 27 migraine days, 13 in August so far….

    Fortunately he’s friends with my Neuro and may he can help me get more rescue meds if the migraines are leaving lesions.

    I see my regular Neuro Monday and the radiologists report should be done by then as well. I’m just hoping they agree it’s migraines and not MS as that’s been suspected repeatedly over the last few years.

    On a positive Botox note, the shots he did for my eye spasms seem to have taken years off my face.

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    • By Nancy Harris Bonk Moderator

      Hi Autumn Sparrow,

      Thank you so much for reaching out to me. Please forgive me for not getting back to you sooner. Let me fill you in.

      My first set of injections was in August and second set early November. After the first set, I felt flu-ish for four days and had a sore head. The side effects weren’t nearly as bad as I was expecting. The only pain/side effect I experienced in November was a bruise on my forehead, other than the millisecond pinch of the needle. I’ve actually had about half the number of migraine attacks this month, but the last two days have been rough. I’m afraid I may have jinxed myself!

      As far a MRI results and migraine go – it’s not uncommon to have white matter lesions due to long term migraine. I know I have a number of them. Let me share this article with you; https://migraine.com/migraine-basics/migraine-phases/.

      I’m not aware demyelination plays a role in migraine, but I’m sure your neurologist will go over that with you.

      I look forward to hearing what he has to say!

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  • By 1bi480g

    I am sorry to hear about your experiences. I haven’t heard of scars from migraines; what exactly are they and how do they form?

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  • By Autumn Sparrow

    I’m not sure on the exact pathology, Ive had other neuros mention they weren’t present in previous MRIs.

    Oddly the radiologist and my neurologist didn’t see them (not sure if it has anything to do with film vs cd).

    They both saw a lesion and demyelination in the t2 & something was up with my CSF regulation.

    Repeated the MRI & all was normal although I still haven’t talked to my Neuro to see what this means

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  • By Autumn Sparrow

    Hi Lisaone,

    When I refer to rescue meds I’m referring to medications that help ease the symptoms of a migraine (ex: fioricet, toradol, etc). These can be over the counter, prescribed or administered in ER.

    Usually I’ll try an abortive med first which may stop the attack, if that doesn’t work I’ll move on to a rescue med if needed. Although I have to be very careful to rotate the meds I use to prevent medication overuse headache , so there are times when I use a rescue med as my first line of defense.

    I have chronic migraines so I also take several preventive meds which can help lessen the frequency, duration and intensity of attacks.

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