Post by electricguy on May 26, 2018 20:38:39 GMT -8
My spasticity is controlled by a fentanyl patch every 72 hours. There have been times when they did not have it at the facility and I had to go to the ER to get it. While waiting to get a new patch, the spasms and pain would be so bad, I considered asking to be shot to put me out of my misery.
I get issues of autonomic dysreflexia, from my catheter being plugged or kinked. Which is about the same is not being catheterized when needed. My bladder overfills to the point of leaking out of the stoma, my blood pressure raises and my ears ring.
I do agree wholeheartedly that most AB people have absolutely no idea or can even fathom our misery.
electricguy, that is a bleak picture you paint. Yes, I had been there, thoughts of a loaded pistol held at my head, my brains splattered all over the wall. Fentanyl is a powerful opioid. I guess your spasms would come back with a vengeance when the fentanyl drains from your cells. I was like that with morphine. When I was due to take my next dose, the spasms would be horrendous. In your case, you may well benefit from a baclofen pump
...and these deprivations and errors happen in facilities that advertise as being “world class” leaders in their field. There is a macabre element juxtaposed over the know-it-all medical “efficiency”. All the while, we are being judged on how “compliant” our conduct is.
Post by electricguy on May 28, 2018 3:52:02 GMT -8
vintage, that is very true. They also make statements in their shift reports that may or may not be true, or only half-truths. Without the patient's knowledge and no opportunity for the patient to explain their side of the issue. Unlike the staff, if the patient files a grievance, the staff can explain their interpretation of the events leading to the grievance.
We naturally acquiesce to those in authority. Hitler couldn’t have killed millions of Jews by himself. It took thousands of beguiled people to slavishly obey his commands. That’s what led to the cruel suffering and deaths of millions of people. It is assumed that people giving orders have a higher social status than people receiving orders. We are conditioned to accept authority. In a hospital situation, we rely on the expertise of doctors. Obedience occurs when we trust those whose knowledge of medicine is superior to ours. A good consultant will share ideas with patients. Through mutual dialogue they will arrive at a course of treatment. This is the way it should be done. You should not have to be slavishly obedient just because somebody has a greater knowledge than yourself. People obey orders to receive a reward or because they want to avoid negative consequences of disobeying. This can lead to abuse by people in authority. This is particularly evident in hospital. Patients don’t want to offend those in authority, fearing that it could impact negatively on their treatment. They become entrapped, compelled to obey even when they think they are being unjustly victimised. It is a psychological minefield.
I'm c1- c2 incomplete my meds have been the same for 2 years since the beginning of my new life. I now am trying to lower or eliminate my meds due to the fear of liver or kidney damage. I reduced my baclophen from 30mgs to 20mgs 4 times a day and I take Dantrolene 100mgs 4 times a day, i also Tizanidine 4mgs twice a day. I'm only 37 years old and feel I'm to young your take this forever. For my SCI I'm truly blessed , I've beat the trach twice due to Tracheal stenosis, scar tissue build up. And can walk with a walker, not as far as would like or as normal as I would like but I'm up none the less. I'm just looking for feed back about the meds because I feel like I have a hard time building muscle and I think it's due to the meds.
Ronbo130, hi there. I think you are so smart to begin reducing those meds. I quit taking baclofen after I researched it. I have clonus (strong, rhythmic kicking) in my left leg which is a stump, so the baclofen used to slow that down. But I do sympathize with those who have to choose between taking baclofen and being able to walk. Welcome here. Nice to meet you.
And can walk with a walker, not as far as would like or as normal as I would like but I'm up none the less. I'm just looking for feed back about the meds because I feel like I have a hard time building muscle and I think it's due to the meds.
Not sure whether it's helpful or not but Peter's greatest challenge is spasticity. We reduced Peter's baclofen from 80mg daily to 40mgs daily. We did it over a long period 10mgs a time with anything up to 2 months between reductions (this is slower than we were advised). He upped his exercise with each reduction too. The baclofen makes your muscles weak as a side effect of stopping the spasticity. Everyone is different and it's all about balance but, for Peter slow baclofen reduction enabled stronger/better muscle control so less spasticity than when he was taking large amounts of baclofen. A conundrum - but by doing it really slowly, his body hardly noticed the difference. Hope that makes some sense. We intend to start reducing again soon but he has had a tough time recently for other reasons so we decided to keep the status quo meds wise just in case. Can't offer any experience of any of the other drugs you take. It's such a slow, frustrating process but speeding up didn't work for Peter. Good luck - sounds like you are up and kicking.
I have found vibration (even the side to side kind), NMES/FES, CBD (RSO style, from Harle-Tsu strain) and Botox to be the most helpful tools for managing/reducing spasticity. I didn’t tolerate baclofen well, hate valium and while I still use tizanidine, I’ve been stepping down the dosage tonget off it completely (its effective but too short acting to be truly helpful).