The Halfway Point — Migraine and Botox Diary

Having the opportunity to try Botox for my chronic Migraines has been an interesting, enlightening experience. As an advocate I’m used to being the person who has tried something, telling readers everything I know about it from my experience. This series is different though. I’m talking about it as it’s happened, and sometimes my readers know a lot more about it than I do!

After my second week and the realization that I was having some unintended side effects, I learned very quickly how to overcome them. I paid more attention to my posture, I rested for little bits frequently throughout the day, and I concentrated on using my head, neck, arms and shoulders *on purpose* to help strengthen them gently. I even began sleeping on a horseshoe pillow to help support my neck, and things seemed to be going really well. I feel like I conquered my side effects. 🙂

Now that I’m at the half-way point, I am pleased with my improvement.

In the past my Migraines included some incredibly brutal facial pain. In fact, the facial pain became so bad that I was almost never rid of it. Sometimes the strikes of what feels like a sharp knitting needle being stabbed into my face, made me wince and put me to bed with a heating pad and in tears. My doctors called it Tic Doloreaux — Trigeminal Neuralgia. Once it became fairly constant, it was like being stabbed dozens of times per minute in the same place, for months on end.

Eventually it involved my eyeballs and felt like being stabbed directly into the eyeball — excruciating. The pain started years ago on one side of my face around my ear, jaw line and teeth, then spread outward from there. It was intermittent and rare. At first.

At its worst, it even involved the nerves inside my ear and down my throat. I usually Migraine on my left side, and that was the side I usually had the facial pain. If I Migrained on the right, the pain was on the right too. Sometimes the neuralgia hit before the Migraine if it was a right sided affair. When I had pain on the right side of my face, I also had pain on the left side. The left side was relentless — it just never let up.

I was very delighted to report to my doctor on week three, that the facial pain was getting better. I actually had periods of time where there was no stabbing pain. What a relief!

My Migraines changed. I almost always Migrained on the left. Pretty soon I was getting “micro-Migraines” on the right in addition to the Migraines on the left. They lasted only minutes to an hour or two, then they were gone. They didn’t necessarily turn into anything full-fledged and nasty.

Before long, I was finally getting some relief on the left side, and Migraining instead on the right. Some people may think this is out of the frying pan and into the fire, but I was ready for even a moment’s relief on my left side. Eventually my Migraines were happening about 30 percent on the right, and the rest on the left. I had few that were double sided killers. Those that were bad were really bad, but there were fewer of those beasties.

Having any kind of relief on the left side after so many years of constant pain was remarkable to me.

Yes, I still Migraine every day. But things are different. It’s difficult to describe just how they are different, but I feel that they are somewhat better. I had prayed for more, much more, but I’ll take what I can get. The effects from Botox injections tend to be cumulative over about 3 cycles – the period of a full trial. So, this is the beginning of a long journey, but one I’m still happy to be on.

The facial pain is not with me constantly anymore. It still hits me during a Migraine, but the last week I have had facial pain without the pain in my throat. That too is an improvement. I still occasionally get stabbing in my left eyeball, but at least it’s no longer a constant battle.

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

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  • taralane
    6 years ago

    Hi Ellen – I am so glad you are getting some relief from the Botox injections. I am at the halfway point from my first set of injections, and my reaction has been quite different. Within 3 hours of the shots I went into a full blown #9 migraine on the L side (my normal as well) and this was over a weekend. I was out of acute meds, and ended up calling my pain specialist for an rx that I had to pay for myself instead of going to the emergency room which was farther away, and I had no one to drive me. This particular attack lasted 96 hours with no let up, and the meds, when I got them, did not do much, but they pulled the migraine down from a #9 to a #7, and I was grateful for that little bit of relief. I am with Kaiser, and have a good neuro there who has migraines, but his only comment to me, was that we would have to see what happened after the next round. Then the storms came in, and I have been in bed for over a month with migraines that just won’t go away no matter what I do. I know not all of this is the Botox, but I have had an increase in nausea every day, and have barely been managing to get out of the house 1 or 2 days a week, and then the pain comes back, and I am down for another 5-6 days. Yesterday I had my first pain free day in 3 months but I was so exhausted, I could not get out of bed, and slept most of the day. All this has taken a toll on my sleep schedule as well – I am often put until 2 or 3 in the morning, and getting up before noon is a challenge.

    I am afraid to take another round of Botox, but I am aware that the second round should have a better effect. I have never been a “normal” patient, and what works for most people almost never works for me. I will do the second round – I am used to being a guinea pig for all this stuff, but I have a couple of questions. My first set of shots was 100 units. Does your neuro plan on giving you a higher dose for the second round, did you have more than 100 units for the 1st round, or what should I be discussing with my neuro about this? The second question is more general, and I would love to hear if anyone else has had this kind of reaction to Botox, and then gone on to have success with it. Right now, depression has set in, and I am trying hard to pull myself out of it, but it is slow going.

    I am on oxygen, (a new suggestion from my Kaiser neuro) 3x a day for 1/2 hour each time. It helps with the migraine I get up with in the morning, and the one I go to bed with, and the one that starts about 4 in the afternoon, but only if the level is 3 or less. At level 4 and up it may take the edge off, but usually within a couple of hours the migraine will be right back.

    Comments anyone?

  • Ellen Schnakenberg author
    6 years ago

    hangingbyathread – Several things to talk about here…

    Yes, it is possible for the injection process to trigger Migraine attacks. This typically lets up. As with other trials of preventatives, I highly suggest patients talk to their doctors and try to stick with the protocol.

    As to the units you’re receiving – you say you’re seeing a neuro, and it sounds like he is using the antiquated protocol which had less response than the current protocol. Here is a link that will explain the protocol in more detail, including illustrations exactly where your injections should be going: http://migraine.com/blog/botox-chronic-migraine-experience/ Without getting the optimal injection process, it’s difficult to say if you’ll see any results. If it were me, I would be seeking out a headache and Migraine specialist http://migraine.com/blog/looking-for-a-migraine-specialist/ who is familiar with the current protocol (which can be as much as 195 units) and experienced in using it. I’m not sure I would even consider the last try as part of the 3 cycle trial, just because you don’t know really whether it was done appropriately or not, as it sounds like it might not have been.

    Oxygen is used in cluster headaches. It is given high rate (12-15) with a non-rebreather mask. Do you know what type mask you are using?

    Oxygen is thought to help a very small minority of Migraineurs because it also helps head trauma patients. The high rate of oxygen causes blood vessel constriction inside your head which is helpful for trauma patients because it slows bleeding. If you have pain related to vascular dilation, this in theory could be helpful. We don’t really know why oxygen works for cluster patients. Some Migraine patients have features of other headache disorders, and your doctor may be trying to target those in hopes of helping you.

    Insufficient oxygen saturation can also trigger Migraine and other headache. If you have a sat problem, it’s possible that your neuro is trying to correct that. This is something you should be aware of though, as a condition that causes lowered saturation levels should be investigated and treated, not just have oxygen tossed at it.

    Are you anemic?

  • MigraineSuz
    6 years ago

    I agree with you. I am getting my second round of Botox next week. While the frequency has not necessarily deceased, the intensity of the migraines are different. Some are less intense, some are just painful in a different more tolerable way. It is so hard to explain. I, too, have hoped and prayed for so much more relief but I am hoping that will come with time. Right now seeing any relief (differences) is good because I haven’t seen any relief in the past 25 years.

  • Ellen Schnakenberg author
    6 years ago

    BethBlue – The part that I think is hard for all of us to wrap our sore heads around, is that these preventatives are not likely to magically make our Migraines go away. The hope is that they will reduce the frequency and/or severity. In fact, it sometimes takes a cocktail of meds combined with other modalities such as massage, acupuncture, biofeedback or even supplements or herbal preps, to get us to a more optimal place.

    Did you know that we no longer are stuck using CFL or LED or other lights now? This has been really helpful for my Migraines: http://migraine.com/blog/migraine-patients-can-now-buy-legal-incandescent-lights/

  • BethBlue
    6 years ago

    I’ve been through four rounds of Botox over the past year, the latest at the end of March. I truly thought I was seeing improvement, until I was whacked with an intractable migraine last Friday. I am just starting to see the light over the past couple of hours (maybe because another one of the CFL bulbs just blew in the kitchen fixture — YAY! My husband and I are celebrating, and a fourth one is flickering as I write this). If I wake up tomorrow and I’m still in pain, I’ll have to go to my neuro for a shot… 🙁

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