For just over two years now I have had regular Botox injections to help control my Dystonia. It started off being every twelve weeks but we soon established that I need it more often than that. By the five to six-week post injection mark the spasms would be back. If I was lucky they would be minor spasms, if I was unlucky I would experience jaw tremors that were slowly loosening my teeth and extreme spasms that would dislocate my jaw. Thankfully my wonderful neurologist was willing to bend the rules a bit and has since been administering the injections every six weeks, which has worked well.
However as I am sat here typing this I am debating taking another Tramadol to help me deal with the pain of my jaw spasm. Normally when I reach this point I have a week at the most to go before my next injection is due. The knowledge that the pain will soon be but a distant memory is comforting. Today things are different. Its been only three weeks since my last round of my injections, and because I wanted to see if I would be able to last longer in-between injections my neurologist agreed on doing them at week 7. That’s another 4 weeks. I have spent the day wondering what’s changed. I know that becoming resistant to the Botox is a risk due to how often I have it, however my neurologist assured me that as I cope on a lower dosage that this risk was minimal. Now I know there is always going to be somebody who has a side effect no matter how small the risk, but if this was the case I would expect my neck or my blinking to be starting to spasm too, as I also have these areas injected as well.
I briefly entertained the idea that perhaps he hit the wrong muscle this time after all no Doctor, no matter how good is perfect. I struggle to believe this though. If I cast my mind back over the last few months I am aware that I have spasmed earlier than usual on several occasions, admittedly however never this early. A glance at my symptom diary confirms this. A part of me wonders if perhaps I just need the dose upping in my jaw. I have much higher doses to my neck, but still with enough room to allow more to be injected to the jaw muscles.
I have taken a Procyclidine tablet in the hope that this will take the edge of the spasm. Between Procyclidine, Volterol, Tramadol and if needs be Diazepam I am hoping to be able to control the spasms and pain levels. The idea of spending the next four weeks like this puts fear in me. I cope better with the majority of the rest of my symptoms, Jaw spasms I struggle with. Everything from a sip of water or eating soup, to talking can aggravate it when its bad. Diazepam is always my last resort. Even on a small dose I struggle to stay awake.
When discussing my worries with my mother earlier she pointed out that perhaps this is just a blip. Blips have occurred before, though normally this is because I have caught a cold or some other bug causing my body to go into meltdown mode. Right now I would welcome a bug, anything to explain the spasm and take away the anxiety of another four weeks of pain.
I am reluctant to give in to the pain and medicate myself anymore right now, as I know this could be just the tip of the iceberg and if it is I want to feel like the medicine has made a definitive difference. If I give in early and take them every four to six hours then when I reach the bad stage it won’t feel like they are making a lot of difference. In the meantime my medicine of choice shall be curling up and watching Jack Whitehall and Russell Howard. Nothing like some comedy to lift the spirits!