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Week Two — Chronic Migraine and Botox Diary

I have found that the Botox injection process for my chronic Migraines has been easier than I thought. In seven days I began to see changes that excited me about this new treatment.

The next Monday — the first day of week number two — brought even bigger changes.

Unexpected side effects

I got up from bed in the morning as usual, going straight to my office and the computer to write until breakfast time. In the morning I felt normal except for the amused and occasional prodding of my motionless forehead just to see if it was still affected.

At about 1:30 in the afternoon I begin to feel fatigued around the base of my neck and my left shoulder. The side of my head began to burn, just a little as did a spot between my shoulder blade and the base of my neck. I recognized the feeling as the same one I used to feel when lifting weights as an athlete. When lifting weights, I always wanted that last rep to be the last one my body could physically push out, so I would continue until I physically failed. When that happens, the muscles are fatigued to the point that they scream at you for relief. They quiver and burn and pull. It’s a feeling you don’t forget, and I was feeling it that afternoon.

I ignored my body, as a good athlete learns to do early on in their lives. I thought, *oops* I’m going to have some issues with that left shoulder I guess. It’s weaker than we thought. No worries. I’ll push through it. My muscles will strengthen over a little time and I’ll be okay. It’s just a bump in the road.

I know Botox injection placement and response is a process that can take several cycles to perfect. Each patient is an individual with individual needs and idiosyncrasies. Apparently I was no different.

I forgot something very important however. My dystonia.

Dystonia is a neurological movement disorder in which the basal ganglia of the brain doesn’t do a very good job of controlling or turning off movement. My basal ganglia was damaged by medicine I took to try to abort a case of status Migrainosus several years ago.

For me, dystonia results in spasms, twisting and posturing of body parts which is beyond my control. I’m lucky. My dystonia isn’t serious once we learned how to deal with it. I keep diazepam on hand for days when spasms get out of control, and have learned to read my body and not push it beyond what is comfortable. Exercise, or pushing my body physically is when I will have problems with my dystonia the most, because I’m using muscles that eventually my brain forgets to turn off.

When that happens, my muscles began to spasm. Not a charlie horse kind of muscle cramp most people have had at one time or other. A severe dystonic spasm can be strong enough to tear tissue, break bone, and is immensely painful. It doesn’t respond to heat or massage or anything typical muscle spasms respond to because the dysfunction isn’t in the muscles itself, but the brain. And worse, it tends to spread, beginning in one area of the body and spreading to others, sometimes becoming a body-wide fight between muscle groups, pulling and twisting my body into positions it was never meant to go.

Thankfully we got the diazepam going, little bit by little bit until we found the right dosage and the spasms became tolerable. They didn’t spread past my shoulder, neck and back.

Unfortunately, the spasms triggered a monster Migraine, complete with trigeminal and glossopharyngeal neuralgia, which is doctor-speak for shooting pains across my face, eyeballs, in my ear and down the inside of my throat. I do not recommend this type of pain for anyone.

I was foolish. I ignored the signs my body was giving me, telling me to rest. This is all new territory for me, and I don’t know anyone else with the same experiences from which I can learn, so I suppose I’ll be making mistakes along the way. This one was a simple lesson, yet big one, and made an impression.

Today, I have gotten control over my shoulder for the most part. I recognize that it is weak right now, and am working to strengthen it, v-e-r-y slowly. My posture on the left side has changed and is now something I have to consciously pay attention to and fix throughout the day. When I feel fatigued, I go lie down. This interrupts my ability to work like I am accustomed to, but is necessary for a while and seems to be much better even after this short a period. I don’t wait for spasms to get bad. If they occur, I take my diazepam in tiny doses so I don’t end up needing them in large doses again. Right now, I am happy with my progress and seem to be doing well.

Post script: This is a diary. You can’t skip to the end and see what happens until it’s written. Yet. I do want patients who may be frightened by my experience so far to stop and think about it carefully. I am writing about this so you can see how I deal with MY experience, and you’ll see as we go along how I work to fix the issues I have that might make others who don’t know their options, consider quitting treatment. My goal is to empower you so that you not only know some of the possibilities from a patient’s perspective, but have a chance to prepare yourself for potential side effects and other issues before beginning treatment. Knowledge is power! I will not stop the treatment before I have trialed it all the way to the end. For better, or for worse. I have extenuating circumstances and a set of unusual comorbidities. Your experience will be different. If you have questions or concerns, please comment below so we can talk about them. Let’s use this space to get good discussion going that will be helpful to others considering this important and potentially life changing treatment!

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

  • Paintchip
    6 years ago

    I started Botox shots before they were approved by the FDA. And boy were they expensive! Thankfully they are now covered by my insurance.

    As a chronic migrainuer, I went through the same (tried everything) ginny pig situation that I know many others have experienced. When BOTOX as an alternative came to light I refused to get it (against my doctors recommendations). Afraid of unknown long-term side affects. Not too keen on needles or the idea of putting poison in my body. After a particularly difficult round of migraines I finally gave in.

    The first round of shots had no affect in the way of helping my migraine disease. My doctor and husband talked me into a second round. According to my doctor they were finding that some people needed a second round before they saw any improvements. Keep in mind that at that time this treatment option was still in the early/experimental stage. I had a very forward thinking neurologist who stays current on migraine developments.

    After the second round of injections I saw big improvements! And was tickled to say the least. And the 3rd treatment proved to provide even better results. Then things evened out and here it is 5 years later and I still get my injections regularly – even though I had to switch doctors. The neurologist I have now is equally as wonderful as the previous one. Equally as skilled with accomplishing the injections. And also stays current on migraine disease information.

    Every 3-months is how often the injections are usually given, however I have been able to go almost 4 months a couple of times without too much change. And only when my trigger conditions were favorable. I must say that this last winter was hard on me as we’ve had way too many weather fluctuations and right when my treatment was wearing off.

    Yes – I can tell when the treatment starts to fade. And I can also tell when it starts to work. In my case this is about 4-7 days after the actual injections.

    I’ve experienced only two negative side affects. Not every time, but occasionally I’ll have MINIMAL bruising around the injection sites.

    And almost every time I will have a significantly painful migraine the day of or the day after my shots.

    I went from every day migraine attacks to an average of 12/15 per month. I know that still leaves me chronic, but at least I have a waaaay improved quality of life now. And those migraines that I still have are USUALLY easier to manage. Meaning my abortive meds seem to work better and sometimes the intensity of pain is less than in the earlier years of daily migraines. Not sure if that’s because of the BOTOX or if it’s because I get some breathing time to recharge between migraine days now. Either way it’s better than before.

    The frequency of my migraine attacks have been cut almost in half. And the quality of my life has improved greatly….. and yes I probably have fewer wrinkles as a happy side affect too, but even if I didn’t I’m so very glad my doctor and my husband convinced me to go that second round.

    Also – Because I tend to bleed more than most my doctor has me put ice on the injection sites for a while before she does the procedure.

    Also – If I’m migraine-y the same day and of my injections that after-burner headache I tend to get seems to be much more severe. So my doctor is now giving me a Toridol shot on my way out the door after my injections. It hasn’t kept that bad bugger from showing it’s ugly head, but it has kept it at a more manageable level.

    Because my work environment provides far too many triggers, we (Dr and I) do believe that once I retire I may see even more improvements. Unfortunately that’s probably another 5 years out. But the good news is that I’m able to work 20-40 hours a week. Before it was nearly impossible to hold down a job. And we’re thinking in that direction because when I stopped going to the office 5 days a week and started teleworking 3-days in my home and 2 in the office – I’ve seen the best results in years. Well….. except when the darn weather doesn’t play nice. You know what I mean!

    The BOTOX treatment regiment has changed from time to time over the years as they have done more studies, and received feedback from patience, learning as they went. I had good care from the beginning, and I do believe the training doctors get now as well as the new standards of care – provide even a better experience for migraine patients now.

    If this is a treatment option your doctor recommends I highly encourage you to stay open minded and consider your options closely.

    I know that 5-years isn’t exactly consider a long-term study. However I can vouch for improvements along my pathway and no scary side affects that I’ve experienced nor found by my doctor. So I’m pressing forward.

    ——————-
    Ellen, thank you for sharing your story and experiences. I wish you well everyday and continued success with your treatments!

  • Ellen Schnakenberg author
    6 years ago

    Hi Paintchip – thank you so much for sharing your story here too.

    I have just had my second round of injections. Am in the middle of a monster of a Migraine and praying the two aren’t really connected in any way. Last time, as I wrote, it took a week before I noticed differences. Now that it is harder to tell when something kicks in, I’m not sure I’ll notice when that happens. It’s only been 5 days, and if today is an indication of how I might expect to feel for a while, I might be in trouble. Here’s hoping it’s just a *bad day*.

  • Paintchip
    6 years ago

    And thank you all for ignoring my terrible spelling! LOL

    ~Cindy/PChip

  • tinallee
    6 years ago

    Hi Ellen,
    I am enjoying following your Botox journey as I follow my own. The forehead feeling is “strange” isn’t it? I finally had to make my husband quit laughing at my nearly stationary eyebrows. My experience has been that I still know I am in the middle of a migraine but when the pain is on the left it is just a stabbing pain in one spot in the back but I have all of the other symptoms that go with it. My doctor focused more on the left side because I tend to have more left side pain than right. They travel to the right side after a few days and I don’t know if it is because I haven’t felt the left side or because it really is worse but it seems like the right side is worse than before. Nausea has always been worse on the right side and that has not changed. It moves back to the left again but as before the pain is either non-existent or less. Naratriptan is more effective so that is a blessing. I hope this lasts. I am looking forward to your next installment. So far the only really bad part of this besides the needles has been a pinched nerve causing pain and weakness down my right arm. That is indirectly related and not a side effect of the Botox but rather from when my doctor had me scrunch up my shoulders to find the right spot he managed to press on the wrong spot and pinched the nerve.

  • Ellen Schnakenberg author
    6 years ago

    What really surprised me was getting my second round of injections on Monday. I literally didn’t even feel any of the injections around my eyebrows. When my doctor was done, I had to ask her, “Were we going to do around my eyes?” LOL! I know this is a neurotoxin, and that it works on pain pathways as well as motor nerves, but it’s going to take me a long time to get used to this sort of half-dead feeling in the forehead. Still, a fair trade-off!

  • Alle
    6 years ago

    I’ve been considering botox but have concerns of the side effects or the possibility of worsening migraines. I would like to know if you were injected in the forehead only or if you received injections on the top of your head and in the back of your neck as well? I’m still considering this option but have not yet made the decision to do so. Also, were you able to get this approved through your insurance? Thank you!

  • Alle
    6 years ago

    Thank you for your response!

  • Ellen Schnakenberg author
    6 years ago

    Let me give you the link to the beginning of the series. I go into a lot of detail including my injection points. Yep, insurance finally approved it, but I had to wait around 10 years for it. Good think I’m a patient person 😉 Here’s that link: http://migraine.com/blog/botox-for-chronic-migraine-my-diary-introduction/

  • laalaa81
    6 years ago

    My doctor has just put me on the waiting list for botox injections. Like yourself I suffer from shooting pains in my face ears and eyes sometimes and know the suffering it can cause, I can’t open my eyes when it get really bad and I end up fighting the urge to scream and cry because it will only make things worse. I look forward to your next segment and send much luck your way xxx

  • Ellen Schnakenberg author
    6 years ago

    Emma81 – I’ll give you a sneak peek – Things are much better 😉

  • Serena Jacobson
    6 years ago

    My doctor is really pushing the Botox. I however, am afraid of the side affects. Dispite your problems would you recommend it?

  • Ellen Schnakenberg author
    6 years ago

    This last diary entry was mostly about side effects, but I have had some improvements as well I hope to discuss in the next blog entry. I’m actually very excited about it.

    I have seen some people get their lives back as a result of Botox. I have also seen some that got nothing but an empty pocketbook from Botox. The problem is you don’t know which category you’ll be in until you try it. As with other preventive treatments, I think that patients should try what they can and continue striving for better management.

    I am very glad that I’ve tried Botox, and at this point we plan to continue with it. I do recommend that, if your doctor thinks you’re a candidate, that you should discuss trying it with them. Very few patients end up with side effects.

    If you are concerned about the type of neck and shoulder issues I had, please work on strengthening them first, then again, have a frank discussion with the doctor who will be injecting you so that you can hopefully avoid the problems. If it helps, my pain and strength issues have basically disappeared over a little time. I anticipate they will get even better as I begin to work to strengthen myself.

  • Ricki
    6 years ago

    I’ve tried Botox for migraine and ended up with a sinus infection. It didn’t really help me so I won’t be doing it again, too risky.

  • Ellen Schnakenberg author
    6 years ago

    Hi Ricki, I’m sorry you got a sinus infection. However, I am unclear why this is considered a side effect of the Botox injections? Where were you injected? Perhaps you were not injected with the current protocol?

  • thomas51
    6 years ago

    The one thing to be concerned about with botox is if you start having breathing problems – days or weeks in – go straight to a hospital – it happened to me, and they took it very seriously – consultant seeing me straight away. Other than that had cracked
    lips for many months and weakness – no fitness and pain in my shoulder but couldn’t decide if that was the botox or had just slept all wrong. It stopped my migraine dead from the first day but will not have Botox again after the breathing scare. Did realise that I have to concentrate on relaxing the relevant muscles in my face/side of head. Have not had a ‘pain’ migraine since but have been ‘migrainal’ – you all know the feeling – it still puts you to bed but spared the pain and nausea. Never thought I would ever reduce my migraine pain but Botox as a kind of diagnostic brought a clarity of what I need to do, much to my amazement it has worked with about 85% efficacy. But still don’t live a normal life – tried hovering other day – next day in bed – have unresolved nasal involvement with migraine, and don’t think it will ever be resolved, the UK is no where on this issue. I feel most sorry for people who are totally alone with chronic migraine – have no partner or family to help because the UK NHS GP’s are useless and uninterested in headache and migraine once they know it’s not a sign of a very a serious illness, which of course makes it very serious when you can’t work in a financially meaningful way or claim any benefits.

  • thomas51
    6 years ago

    My migrainal state came on later today and can see I couldn’t write this morning from that reply, this is another sign of the problem.

  • thomas51
    6 years ago

    The hospital didn’t think it was botox because it happened a month after, they said if I started have breathing trouble straight away it would likely be the cause. However on the Allergan site it says days or weeks after which I pointed out but they stuck to their position. They did say that it could be something else in the botox that I was allergic to. I think it was the botox – never felt like it before. It’s been almost a year now and no migraine pain or nausea just a migrainal state on average once every two weeks if I revert to that horrendous pain and sickness will think a lot about having it, but just in the corrugator area. But a year in feel confident that so long as the face/side of head muscles are relaxed and am not around any dust or strong odours or do any public travelling will remain the same. Don’t have that fatalistic feeling any more – that nothing will stop it and I would be better off dead.

  • Ellen Schnakenberg author
    6 years ago

    thomas – Breathing problems don’t happen often at all. I’m sorry you were in the small minority with a side effect like that. It is more often seen in Dystonia patients who have much more toxin injected than for Migraine prevention.

    Did you talk to your doctor about modifying your injections to see if you might still benefit from them?

    I could understand shying away and not wanting to repeat your experience…

  • billiemarieweikel-lewis
    6 years ago

    I just received my second round of Botox shots and iv infusion @ a month ago. I am scheduled for my 3rd round in April. I suffer from chronic basilar artery migraine with migraine induced vertigo. I did not get any relief after my 1st round of shots, and immediately after getting the 2nd round, I had piercing pain. It only lasted for that day, and since then I have had a few more tolerable days (I’ve had a constant migraine for 9 months now), then I did before my second round of shots. I have started having muscle spasms in my left leg, from my hip to my toes. The first time it lasted for @ 2 minutes, the second time lasted for @ 3 minutes and the third time lasted for @ 5 minutes. It felt just like you described, like a spasm from pushing my body to far in exercise, and I just thought that it was part of my restless leg syndrome. I usually only experience restless legs at night though. I’m wondering if I should mention this to my Neurologist.

  • Ellen Schnakenberg author
    6 years ago

    billiemarieweikel-lewis – There’s no way for me to tell if what you were experiencing was related to your Botox, RLS or anything else. That is definitely a question for your doctor. You should always mention all *strange* or different symptoms to your doctor, as these are often left out and could really help them figure out your particular puzzle.

    Dystonia spasms typically are not momentary. They can last usually from several minutes to – well – forever. I think the burning pain I experienced was because my muscles were weakened, so were working extra hard to hold my body in position while I was working.

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