Pain pump failure

Okay, I had my pump cranked up to 4,2 mg/24 hours earlier this month. I suddenly began experiencing fits of nausea and vomiting. Quickly got the output reduced back to previous level. This past Monday I had my pain pump refilled with hydromorphone and Clonidine. Ever since I have not been able to sleep, eat, or walk straight. Plus, I feel like I have aged ten years. I have gotten very shaky to boot. Any thoughts? Thank you!

@heisenberg34 First, I’m so sorry this is happening to you! It sounds awful to experience what sounds like almost an allergic reaction to the medication? Reason I reply
is I have the exact mix of meds
in my pump, I too get it filled with hydromorphone and Clonedine. Was this the first time you had this mix of
meds? What do you think might have caused this adverse reaction you are describing? I just wanted to offer you some support as we are in the same boat. I get my pump filled with the said mix of hydromorphone and clonedine but I don’t experience those adverse reactions you describe,
so I’m thinking something must be off. Is the concentration of the meds too high you think? I am concerned that you can’t sleep or eat or function normally after your refill, has this ever happened before? Could it be a bad batch of meds you got this time? I just hope they figure it out soon. These pumps are finicky things and it can really mess with you if things are not done right. Just know you are not alone, feel free to dm me if you want to discuss this further. I hear you and I can feel your pain and frustration. To me it sounds as if the meds itself might be the culprit. This medication is made by a compounding pharmacy and errors might happen in their lab when mixing up these intrathecal meds. Maybe your meds were compromised this time? Maybe your meds were not pure/clean enough for intrathecal use? I hope they figure out what went wrong, I’m here if you need a friend who understands what you are going through. Stay strong and keep advocating for your rights to proper care. I hope you can find ways to feel better soon. My heart goes out to you!

@alexandercrps Thank you for responding. Greatly appreciated. Yes, this is the first with this mix/ I feel like I have aged ten years in the past week. Still haven't slept. appetite is gone. Have lost ten pounds. My feet feel as if they are attached to my legs with swivel joints. Very shaky. Not what I was hoping for.

@heisenberg34 Either you are allergic to that mix or the dose is way too high. I would go straight back to your pm doc to get the meds removed from the pump, maybe even just fill it with saline and put you on oral meds instead? I am no doctor so I can’t say anything more about this, it just seems strange that you are having such adverse reaction to this. Maybe the meds were not 100% clean? These compounded medications carry with it some risk of human error so I’m just thinking out loud right now. I think a call to your pm doc is warranted for sure. Stay strong my friend, you are not alone

@alexandercrps Thanks again. I wish it was as easy as just going back and having the situation corrected. Have to make an appointment, wait a couple of days in agony, go to appointment, and hope that the doc can rectify the situation that day. LOL

@heisenberg34 hey I can appreciate that. When you have a pain pump you’re more or less “married” to your pain management doctor who deals with the pump, only him is authorized to make any changes to the pump, so I completely understand you.
I’m just so shocked to read how you had such adverse reactions to this specific mix. I can’t help but to wonder that there is a human error somewhere. I have a friend with crps who also tried hydromorphone in the pump but that went straight to hell really quick with vomiting and other adverse reactions. We all have our differences and we can all become allergic and more sensitive to certain medications I guess. I hope you get help soon my friend. It sounds awful what you’re going through

@alexandercrps This is good insight. I am getting a pain pump on 5/13. Then the continuous visits to the pain management doctor begins. His office is 100 miles from me, and he is semi-retired, so he doesn’t work a lot. I expect the endless stream of appointments to adjust the medications and dosages will be challenging. Don’t even know if the pump is going to work for me. I chose the pump over the spinal cord stimulator. If feels like flipping a coin to choose.

@jthomas458 Hmmm that makes me a bit worried tbh. I always give the same advice: don’t choose the pump unless you have a very dedicated team of doctors to support you and can help you service the pump every month/every two months when it is time to refill and make adjustments. This tech is so finicky and it really does take expert top notch neuro surgeons and a very experienced and motivated pm doc to help you make it work.
Driving 100 miles for every titration and every settings change does not not sound like the most ideal of circumstances. If you read what many others on here experience, which is zero effect from this pump and just a ton of complications and even plain out dangerous medical malpractice. They all have in common that they were not served by a professional, dedicated and experienced surgeon/pm doc team. I also need to warn you (so you can make the most informed decision) that the implant operation itself can be very painful with a very long painful recovery before they even begin to program the pump.
As my own neuro surgeron said clearly to me before my operation: you really ideally want to get the first operation right without complications. It is both very time consuming and expensive to have to redo this operation in case
corrections are necessary.
Even look at my case, even if I had my pump initially placed by the most experienced neuosurgeon in my state, I still had to get the whole operation redone about 1 1/2 years after having zero analgesic effect
from the pump.
My “luck” started when I moved pain management docs
from one inexperienced doc to a higly specialized one,
who deals with pain pumps and stims every day. When he reviewed my case after that full year and a half of just post op pain and not really getting no effect from the pump, my pm doc who also operates did a complete redo operation to place the catheter much lower on my spine so it targeted my foot better. He also moved the pump itself further up on my back left flank area as the pump had sunk into a
pocket close to my hip bone.
So basically I had to go through two full operation within two years to get it right. It took me over two years and trial and error and a TON of operating pain and post op pain in addition to the extrem pain this pump is designed to treat. I would actually warn against the pump in your case as I fear you will have more complications than it can take a long time to
figure out the complexities and what kind of meds work for
you intrachecally.
It can be a long, painful and expensive journey to get relief from these pumps.
I hope you figure it out and please make sure to find a team
who can help you with the pump. It can work wonders with for some, but it can be useless and just painful and expensive and a waste of time for others. My advice is: have a pro team behind you who can help you with the pump. If
you don’t have that available I would say a oral
pain meds and an SCS is a safer option for you with much less risk, pain and complications

Has anyone had a SCS that worked well and then just stopped working suddenly? It was the only thing that gave me decent relief. I had it removed two years ago(everything), I currently have a pain pump that has not given me any relief in three years. I tried a trial of a new SCS about a year and a half later, but the pain doc could not get the electrode/paddle into the 'sweet spot" due to scar tissue. So, it did not work. I wonder if there are folks out there who have had success with a second SCS after having one removed?

@alexandercrps @alexandercrps, I really appreciate your thoughtful response. You’ve perfectly captured my thoughts on why I might not want to go through with this surgery. Like many people thinking about a pain pump, I’ve had a lot of surgeries and have thought through all the possible outcomes, both good and bad. Most surgeries have a clear end result (they work or they don’t), but this one needs ongoing support and tweaking, even if the first surgery goes well. So, I really appreciate what you’re saying about the need for an experienced, dedicated team to support me with the pump for the rest of my life. My bedridden sister, who had a bad SCS surgery, reminds me every day of the risks involved. Years ago, I moved from a big city with great medical facilities to a smaller town, which meant traveling for the same level of medical specialty and expertise. I should think about this more when deciding on a pain pump. My surgery is scheduled with a top-notch neurosurgeon at a big university hospital, and the semi-retired pain management doctor has been there for 40 years and has a dedicated team of PAs and other nurses. Their pain pump program has 1,300 patients, but it’s still 100 miles away from me. If this decision becomes a nightmare, I’ll need to make some tough adjustments. I’ve considered moving closer to the hospital or ultimately taking the pump out. However, I’ve learned from others that these adjustments would be challenging, and I need to survive the initial surgery and a year or two of hospital visits before considering these options. I have to admit, I’m counting on a lot of things to go well for this decision to even be tenable. Even in the best case scenario, I will have a lot of trips back and forth to the pain clinic. Like you said, only the semi-retired pain management doctor and one of his nurses will be able to make adjustments to the pump and the medications. Thanks for giving me the honest feedback I need to reconsider this decision in the next couple of weeks, before it’s too late. No words can express how much I appreciate the advice and food for thought you’ve shared with me. Thank You!