For Baclofen Users...

Obvious Disclaimer: I am not a doctor and I understand medication may affect others differently. This is just my experience, a little internet research, and my personal opinion.

A couple of years ago, my neurologist at the time prescribed Baclofen. He prescribed two 10 mg pills four times daily. Woah – 80 mg daily! I never once followed those instructions. I did take 2 per night to start. It was so refreshing to wake up looser, no muscle spasms, and no leg tremors. That part was fantastic.

The part that wasn’t so fantastic was that I was a zombie! I could have slept most of the day. So I went down to 1 per night. Still… a zombie. So I cut the pills in half and took 5 mg per night for a while. Eventually, I wanted to stop taking it altogether and the short but horrendous withdrawal ride began.

If you are wanting to stop taking it, Google the symptoms and make sure you ask a doctor about it. I didn’t do that. After a seriously insane and uncomfortable week, I finally looked it up and read these withdrawal symptoms (among others): Withdrawal symptoms may include auditory hallucinations, visual hallucinations, tactile hallucinations, delusions, confusion, agitation, delirium, disorientation, fluctuation of consciousness, insomnia, dizziness, nausea, feeling faint, inattention, memory impairments, perceptual disturbances, pruritus/itching, anxiety, depersonalization, hypertonia, hyperthermia, formal thought disorder, psychosis, mania, mood disturbances, restlessness, and behavioral disturbances, tachycardia, seizures, tremors, autonomic dysfunction, hyperpyrexia, extreme muscle rigidity resembling neuroleptic malignant syndrome and rebound spasticity.

Eventually, the ride ended and I was off. Now that I’m free, I’m able to take one every 7-14 days. I can now experience the relief the medicine brings but I’m not locked in a prison knowing the crazy train ride I have to take to get off.

So my experience and opinion tells me this:  I think that the medicine must build up in the body. It can cause debilitating sleepiness. But when taken responsibly, I do so enjoy waking up relaxed. It’s a wonderful feeling. But those good mornings just can’t come daily. I’ll enjoy 2-3 per month instead. Be careful, my friends, and do your research.

Still hope, Still faith

The delay of a fresh blog is not due to discouraging progression this time. Pure procrastination. That’s it.

I was ready to order myself a Craftsmatic bed and call it a day. I had given up. There was not much fight left in me. I couldn’t imagine going somewhere on my own. I wasn’t strong enough. The procedure I had on my mouth did its job. I felt an initial boost of energy once my mouth healed. People could see a huge difference just by speaking to me.  That energy got me moving again. I’m working with my physical therapist, a Pilates instructor friend, walking at the pool and I’m walking on my walker more. It’s not easy; I hate it, but know it’s vital. The more I sit in my dumb scooter, the more my body withers.

Since the mouth surgery, I’m no longer nauseous with a headache every evening. I’m fatigued but it’s not nearly what it once was. Victory.

Slow progress but there is a glimmer of hope. I’m still not out and about too much but at least it’s not out of the question.

The first video (pre-surgery) shows the severity of my hand tremors. Those tremors have not changed. The second video (post-surgery) shows me walking up the stairs on a good day. (The face slam at the end is a joke so please don’t report domestic abuse.) The stairs are still so hard. Maybe it takes a long time for muscle to repair and grow? I’m not sure. I have faith that if I keep getting up them, I’ll get better and better at it. I admit, however, I hitch a piggyback ride every other night.

The purpose of these videos is to show anyone reading this the level of disability I’m challenged with. Maybe someone reading this is in the same boat – or an even better place – and I can encourage you. Life is not over. We truly have nothing to complain about.

I’ve said it before on this blog and will say it again… My faith has been deeply strengthened by the challenge I deal with. For that I’m grateful. If this shows even one person out there that I believe God is truly good and makes all things work together for good for those who love Him (Romans 8:28), then it has been worth the fight. And I will continue to fight and let His glory shine through me however possible.