At my last doctors visit with my PCP, she was delighted the medicine is helping my symptoms. I admitted to her that I forget to take it sometimes. Surprisingly she told me it was a good thing I was not taking the medicine everyday. She explained that she didn’t want me taking the medicine everyday, but instead just to take it as needed. I explained to her taking the medicine as needed is difficult to do, because baclofen makes me drowsy and I need to be able to function throughout my day and so I can only take it at night at bedtime, but most of the time my symptoms do not happen at bedtime.
Still I was excited of the idea of not being tied down to the drug, so I decided to experiment with the idea of only taking as needed. For 5 days I was able to go without the medicine, except for the numbness everything seemed fine at first. Then it was time to really test how well my body could handle it without the medicine. So far not bad. Not only was I 5 days off the medicine, but I had taken a month off from much of any exercise at all (yes I still had a few episodes during the month, but not much) including martial arts. The day I returned to class my symptoms returned mildly with tremors and mild spasms, and terrible foot drop, but I managed to make it to the end of class. It was hardly much cardio at all that evening, but I was still breathing like I had just run a few miles. Still I figured it was a manageable tolerable evening. At home I went to sleep earlier than usual and I made sure to take my medicine right before bedtime.
A few days later during interrupted intimacy with my boyfriend and a bunch of laughter from the interruption, I began to feel really tired suddenly and not too long after I began to spasm. The spasms kept coming and me eventually kept from breathing in or out for seconds at time until he pushed on my diaphragm or a movement allowed me to gasp for air. This went on for several minutes into the night. He was afraid to let me fall asleep, afraid I would stop breathing. I knew I would not stop breathing completely, but the terrible feeling of not being able to breath was to say the least traumatizing. I asked for my pill right away. He already had baclofen in hand.
I have been afraid to not take the pill since then. Another thing I have noticed is that whether I take the medicine or not the numbness and weakness on my left side still exists. For example, yesterday while trying to carry furniture into the house as I am picking up furniture I feel like I am really giving it my all to help and my right side is, but my left side isn’t. Also on some days more than others I am sensitive to being touched on that side. I don’t necessarily go into spasm when I am touched, but I really don’t like the feeling of being touched on my left side. It is difficult to explain that to my kids when they try to hug me. I don’t want them to be afraid to touch me.