Getting off the Baclofen Pump

[August West]

Reducing my baclofen pump dose often results in high muscle tone and constant spasms indefinitely. I get stuck in a fixed position where I can barely move while my body shakes violently. These spasms are strong enough to break bones. At that point, I would characterize them more as seizures than spasms. I take baclofen pills to compensate for the withdrawal. Then I go to my doctor whose solution is to increase the pump dose.

But increasing baclofen isn't solving the problem. It's making it worse. The withdrawal symptoms return over time and they get worse and worse. Even if the original reason I started baclofen may no longer exist, I still have to keep increasing my baclofen dose just to prevent withdrawal. Aside from the obvious problem of getting caught in this never ending cycle of increasing the dose, baclofen weakens all your muscles, which makes transfers more difficult and leaves you more vulnerable to injury and falls.

Has anyone been able to stop the pump? If so, how?

[SCI-Nurse]

What was the original reason for getting the baclofen pump?
You are experiencing severe muscle tightness with tapering off the baclofen for which it is usually prescribed for
i think there is more information needed to understand what is going on

SCI-Nursepbr

[August West]

Short Answer: Root cause may be kidney stones and UTIs

Long Answer:

My injury is 39 years old. At first the spasms were just a nuisance. My legs muscles would quiver, and small amounts of baclofen would stop it. Over the next 10 years, the spasms grew stronger and stronger. Occasionally, they would get strong enough to fully extend a knee. I was taking the max dose of baclofen pills (120 mg/d) and I was still getting spasms. Because baclofen would make me sleepy and tired, I would try to cut back on the dose, which lead to withdrawal spasms. I couldn’t cut back because of withdrawal, and I couldn’t increase because I was already on the max dose. That’s when they added diazepam. It was too much. I was sleepy, tired, and loopy. In the 10^th year of my injury, I had a DREZ (dorsal root entry zone) procedure, also known as a partial rhizotomy. It was great. I was able to stop all the meds for about 10 years. I had my life back. I had a girlfriend. I was doing well in my career. I was happy.

Then the spasms started creeping up again. In the 20^th year of my injury, I started taking baclofen pills again. The same pattern resumed. The more I took, the more I needed to take. This time, I wasn’t going to let my self get to the higher doses. Because I knew it was a dead end. Hence, I stopped the baclofen completely and lived with the spasms by strapping my ankles to the bars of my wheelchair to prevent my legs from kicking. The spasms got so strong that they fractured a femur at the neck. I had to do something. In the 26^th year of my injury, I got the baclofen pump.

The pump is much better than the pills in that the side effects are lesser. But I still have the same problem. The more I take, the more I need to take or else I get withdrawal spasms (constant spams on top of extremely high tone and itchy skin).

It seems a root cause of the spasms has been the urinary tract. Whenever I get a UTI, the spasms go through the roof and then go down next to nothing after a course of antibiotics. Kidney stones made the UTIs occur more frequently up to the point that I was on antibiotics more than I was off them. In the 34^th year of my injury, the kidney stones were removed. That gave me years of relief with little to no spasms.

At this point, it made sense to decrease the baclofen dose. But if I tried to decrease the dose by any significant amount (more than 2%), the spasms return in a fierce way. It would take forever to decrease the pump dose 2% at a time. Hence, I tried a new approach to stop the pump. I would take baclofen pills to prevent withdrawal while decreasing the pump approximately 10% at a time (115 to 105 µg/d). But that made it worse. Hence, I went back up to the original dose of the pump and stopped the pills.

I appreciate what baclofen can do. But given the history that I have not needed baclofen for long periods of time and the history of how spams are secondary to urinary tract issues, it seems that I may not need baclofen today, but I still have to take it to prevent withdrawal. The pills were easy to stop. The pump seems impossible to stop.

[SCI-Nurse]

Thanks for the background history
What is your urinary tract medical condition currentlySCI-Nursepbr

[August West]

No stones from last ultrasound 6 months ago. No infection from last culture last week. Just started oxybutyni last week. Straight cath at least 5x daily.

[August West]

Here's the fine print that they didn't say during the baclofen pump trial, "most patients require gradual increases in dose to maintain optimal response during chronic therapy."

https://www.drugs.com/dosage/baclofen.html

That's an understatement. To be forthright they should say. "Most patients will keep increasing their doses in order to prevent spasms from getting worse than before starting chronic therapy." That would be truth in advertising.

When I say worse than before, I mean strong enough to prevent breathing, knock you out of your chair, and even fracture bones. No one tells you this. Think twice before starting.