Intrathecal baclofen and tiredness

mikeq

MAINTENANCE DOSING FOR SPASTICITY OF SPINAL CORD ORIGIN PATIENTS:
-During periodic refills of the pump, the daily dose may be increased by 10% to 40%, but no more than 40%, to maintain adequate symptom control.
-The daily dose may be reduced by 10% to 20% if patients experience side effects.
-Maintenance dosage for long term continuous infusion: 12 to 2003 mcg/day, with most patients adequately maintained on 300 to 800 mcg/day; there is limited experience with daily doses greater than 1000 mcg/day.
www.drugs.com/dosage/baclofen.html#Usual_Adult_Dose_for_Spinal_Spasticity


It's hard to find that balance.

And I was hoping someone would speak up if they had similar condition. I thought I'd at least give the recommended dosing. Good Luck Mikeq, I hope someone will speak up.
It's a good thread. I couldn't find anything related in our old threads.

Mike, I recall you've struggled with this for a long time now.  Threads form apparelyzed are still available until 12/19, if I recall. It may be helpful to reread this one:

www.apparelyzed.com/forums/topic/34619-baclofen-pump-overdose-and-ticking-noise/
as it ended up being long and informative.

Hello and thank you for your comments. Yes the baclofen overdose post was very interesting. I too hate the pump with a vengeance and wished I had never had it put in. Trouble is I am stuck with it now. It causes insomnia and tiredness. So horrible to be tired and not be able to sleep properly. The ticking noise that was reported is entirely natural. Mind ticks approximately nineteen times per minute. It's the motor inside. The time to worry is when it stops ticking. It's really scary to hear the alarm as the battery nears the end of its life. My consultant let it go on for weeks before he changed the pump. I was on tenterhooks all that time. As a tetraplegic who suffers from autonomic dysreflexia, the effects of the pump stopping would probably kill me. Yes, I truly hate this device. I hate the feeling of intrathecal baclofen and I hate the potential of a catastrophic failure. Regarding my blood pressure: it is incredibly low in the mornings. People look at me in disbelief when I tell them that it is sometimes 55/35. I struggle to survive and have to be tipped back in my wheelchair, my legs elevated several times before my blood-pressure begins to rise. Some mornings it takes thirty minutes or so before my blood-pressure reaches an acceptable level. This morning my BP was 62/42. At noon it was 92/51. Sometimes a good spasm will elevated it dramatically. Occasionally I actually welcome spasms but when I'm going through a Dysreflexic phase, spasms can rocket my blood pressure to dangerously high levels. I take it all on the chin. It's all part of spinal injury. We all have our ups and downs. The downs make the ups even better. Once again thank you for your posts.

mikeq that's not good. The doctor should have definitely replaced the battery much sooner. Autonomic dysreflexia is no joking matter. I too have low blood pressure but not quite as low. It's crazy how much our blood pressures fluctuates in a day. Can't be good for the heart...