This week I had my third round of Botox treatment for migraines. The impact of this round will pretty much determine whether I continue to receive the treatment or not. At the moment, after the second round, the feeling of both myself and the neurologist is that it is somewhat effective. But somewhat effective may not be effective enough to continue. Somewhat effective in my mind is somewhat good, but I would really prefer an unambiguous and declarative effective full-stop, exclamation mark. But things are not always that clear, or certain.
The first round I had in May was, initially, amazingly and wonderfully effective. It seemed to kick in about day 10 or 11 post injection. And for four weeks I had very few symptoms at all. I was down to experiencing a couple of mild to moderate headaches a week and had only a handful of episodes of weakness which resolved quickly. I was sure I had found my golden ticket and that my life had opened up to me again. I was planning on returning to work, on hiking Offa’s Dyke (a fortnight long walk along the border between England and Wales, which looks really cool), returning to dance classes, and even cycling (an activity I’ve never really been good at – but love the idea of). And then I had a big episode, and another, and another and pretty soon I was back to my usual pattern. But I’d had a break, I was feeling stronger and having less headaches.
When it came time for the second round I was again full of anticipation- I had a list of activities and things to do during my anticipated ‘good period’. I could handle this I figured. One month out of every three. I could work with that. But it didn’t happen, my ‘good period’ never came. Again I had some reduction in headaches, I still felt a fair bit stronger over all, but round two didn’t give me the reprieve I’d had the first time. I was disappointed and frustrated and then I realised something. I may not get better. And, I have to find a way to accept this as a possibility. I decided to adjust my thinking again and instead of planning for what I can do when I have a break in my symptoms I started to look for ways to make everyday as comfortable as I can.
So now here we are, round three, and I am not full of expectation, or anticipation, but am happy to see what unfolds. But yes I actually want it to work really well.
About the Botox itself.
For the treatment of chronic migraine Botox is injected at 31 sites in the head and neck and shoulders. Now I am fairly comfortable with needles but I really do not like this treatment. I find it really hurts, some points more than others. But I also think I might be a bit sensitive to pain and in general I have a lot of sore and sensitive points anyway. So I think everyone would feel it differently.
The treatment only takes about 10 minutes. So it is over quickly at least. There are some negative side effects that can occur, according to info from my neuro and the producers of the drug these include weakness of certain muscles, drooping eyelids, pain, even trouble swallowing, (Botox side effect information) I seemed to get a very floppy head after my first two treatments- it wasn’t constant but when I’d been sitting up for too long or by the end of the day it became hard for me to keep my head up, so this time the Dr injected higher up in my neck to see if it helps. If it continues she said she could reduce the dosage at those sites and that could help. Botox lasts for about 12 weeks so needs to be repeated at those intervals.
After the treatment I felt a bit off, shaky and tired and the next day I felt tender, sore and like I had a hangover. My neck was a little stiff and sore (another possible and fairly common side effect) but it wasn’t too bad. I just lay low and tried to be gentle on myself.
I am trying to remain curious and open to seeing how things unfold over the next three months. I plan to keep a better track of my symptoms and episodes to see if it really is helping or not. I will keep you posted.
A quick note: I tried to find a good website to direct readers to for more information, but the one I found to be most helpful was the site for the makers of the Botox treatment- as such I was unsure weather to provide the link here as I worry that it will not be entirely unbiased, it is however clear and informative at least so I did include it above with the image which came from their website. I have also included another couple of links here for your reference.
Please note: I am not a doctor, and I am not advocating or recommending any specific treatment options. I am speaking from my personal experience only. If you have concerns or questions about migraines, Botox or treatments available I recommend that you speak to your health practitioner.
Jo's undercurrent 