On 8th March, I started to get intrathecal baclofen withdrawal symptoms. I've had these symptoms before, quite a few years ago when my Medtronic baclofen pump developed a fault, so I was already aware what the symptoms were.
Just to recap on the symptoms, we are not just talking about a little tightness in the legs here, the symptoms are itchy scalp and skin above the level of injury, hypersensitivity in fingers, toes and pressure bearing areas, and a severe increase in spasticity. In my case, the spasticity affects my legs, abdomen, chest, back, arms and hands.
A side effect of the spasms in my chest is that it also affects my breathing, and the extreme spasms in my back, causing my to go into a rigid "flat board" state, cause me to into Autonomic Dysreflexia.
As I knew I was due for a pump refill on the 10th of March, I figured I'd run the symptoms past the nurse at outpatients. I kind of knew though, that the pump was faulty, because it wasn't due to run out of baclofen for another two weeks, and sure enough, during the refill process, when the pump was emptied, there was still 14ml of baclofen remaining.
After a quick consultation with the doctor, it was decided to give the pump 3 days to start working again after the refill, just in case there was an air lock, or debris/blockage in the tubing. I was also booked in for a Myelogram on the 18th of March, which I was to confirm on the 13th March.
Having been spasm free for so many years, it's amazing to suddenly return to spasticity again, and you forget how much of an impact spasticity has on your life.
I've been prescribed oral baclofen, 90mg per day, which has really affected my concentration levels, along with giving me the dry mouth and nausia symptoms. The oral baclofen has helped raise the trigger threshold of the muscle spasms, but once triggered, the spasms are still just as powerful. I've also been given some Glyceryl Trinitrate (GTN), to help reduce my blood pressure during extreme autonomic dysreflexia attacks.
This morning I was awoken from my sleep, to feeling like I was suddenly jolted with 50,000 volts. Imagine being fast asleep, and someone firing a started pistol, to which your body reacts with the most powerful physical exertion you can imagine, legs drawing upto your chest, and immediatly extending straight again, whilst your arms are fixed straight, with clonus in the wrists, stretching until you think the tendons are going to snap. Yup, that was my early morning call, although I would of prefered being woken with a nice cup of coffee!
Once in my wheelchair, the spasms are broken a little, but I still get the powerful spasms in my back, arching me backwards, pushing my hips forward, trying to straighten my body into the "riged board" state. When this happens, my right arm extends straight, not good when you're trying to drink coffee. This morning, my round of toast ended up being catapulted across the table!
Generally, baclofen withdrawal puts the body into a hypersensitive state, so I'm hoping that by Friday, the trigger threshold will be even higher, as the hypersensitive period wears off a litte, but we'll have to wait and see.
Well, that's all for now folks!
I'll post another update on friday, and report on what's happening.
Simon
Dawn - don't panic. You don't feel the needle at all.
Does that mean you get your brains cells back?! 