My five day seizure study showed that the episodes of tonic spasms, breathing problems and syncope are caused by the muscles in my neck spasming while trying to protect my spine. The EEG was completely normal during the episodes, so I am not having actual seizures. The doctors then ordered two MRIs (cervical and thorasic spine), which I had to be sedated in order to endure the length of time needed to complete the tests. With the seven compression fractures not healing well, getting worse in some places, causing kyphosis (curving of my spine), and atelectysis (squishing of the base of my lungs and reducing my lung capacity), my neck/back muscles are trying to compensate by spasming when they become too fatigued. The neurologist suggested I wear a soft c-collar to support my neck during the day and use a soft neck pillow when I sleep. She hoped that this would ease the obvious tension in my neck and reduce the frequency/severity of my spasms.
This seemed like it was starting to work, to some degree, as my spasms and pain levels did in fact decrease in frequency, though not severity. I was still having episodes while on my two week vacation with my family in Sanibel Island. Thankfully I only had a couple of episodes, and only one day where I was indoors the entire day. I did much more physically then I ever thought possible. I am very proud of myself that I was able to walk on the beach, go in the pool, and even hold a fishing pole for a short time. I did all of these things without using my walker once. I found that while wearing the c-collar I am able to go longer without feeling the burning in my neck/back that inevitably leads to spasms. Here is a picture of me during our vacation and a short video from a morning at Blind Pass on Sanibel....it was so beautiful and my parents caught quite a few fish this year!
I also started taking valium when I first start to feel my aura. While this does not prevent attacks, it does shorten the length of time they last.
When we came home, I started pulmonary rehab and found I am able to do much more exercise then I thought I would be possible. I am slowly working my way to stronger muscles, which will hopefully also help prevent attacks as the muscles will not have to work as hard to support my spine. I am also trying a new muscle relaxant in the hopes of preventing episodes, so I take this medication three times a day. It is designed to work directly on the spine/brain stem to relax the nerves that send signals to my muscles. So far it is working well, but we are still adjusting the dose to see what works best. I feel a bit like a chemistry set again, as I tried to lower my chemotherapy medication and flared big time. Apparently, it is working after all...I was not sure that was the case.
I have also been trying to go out more often to do FUN things. I want to start enjoying life to the fullest. I am tired of being scared of these attacks...tired of feeling like I have to fight for everything. I want to RELAX and ENJOY. So far I have been able to do this for short bursts of time. It makes me hunger for more of those times.
I am definitely TRYING and HOPING for more ups on this seesaw I call life. So many things to look forward to in the next couple of months. My family and I NEED this happiness and hope that is shining ahead of us. I feel it is just out of reach, and I am trying to grab a hold of it with both hands!
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