Medtronics Pain Pump - Questions from a new pain pump patient

Hi everyone, my name is Stephanie, I am 38 years old and just had a Medtronics Syncromed Pain Pump implanted on November 17th, 2020. Basically I have tried several different pain relief options and nothing has worked. I also cannot take any NSAIDs due to having gastric bypass in 2009. I herniated 4 discs in my lower back L2-L5 and had a torn ligament in my spine as well in 2016 after seeing a new chiropractor and was unable to walk the next day. I also have degenerative disc disease and spinal stenosis.

In 2018 I was approved for spinal fusion surgery (TLIF) on 3 of the 4 discs. I had the surgery in May of 2018. Unfortunately, that didn't help much with my pain and after living 2½ years with 4 herniated disc's I have nerve damage in my right leg and my doctor and I believe that the nerve pain I constantly have in my left leg and sometimes my right leg is due to the hardware from the spinal fusion combined with my spinal stenosis causing a nerve in my spinal canal to get pinched. It's extremely painful. 😔

Anyhow, I had the pain pump implanted a little over 6 weeks ago. I've had 3 increases in dosage. They started me off with just water in the pump for two weeks and then did my first fill of pain meds in the pump at two weeks in. I have Dilaudid in my pump since I sometimes have a bad reaction to Morphine. My first dose was at 0.01%, second was at 0.02% and this last time it was at 0.05%. I haven't noticed a difference really in my pain at all to be honest. Maybe a tiny bit but I still have a ton of pain. My doctor hasn't mentioned anything about offering a bolus option which I've heard about through research and he is wanting to take me completely off pain pills but I told him that currently I do not feel a difference in pain and feel that the pain pills are still necessary for me to be able to function. It's a little frustrating having to build up to the dosage that will actually help my pain but I know it has to be a slow process and will likely be worth it once I get to a dosage that helps me.

My questions are, when you get an increase in dosage, does anyone else get a headache a few hours after your dosage has been increased? I get one every single time. I ended up needing what they call a blood patch epidural after I had the pain pump implanted because I ended up with a severe spinal fluid leak. I basically had very little spinal fluid in my spine so I guess the doctor said they added something to my IV when they did the blood patch (to stop the leak) that helps my body produce more spinal fluid. That spinal fluid leak headache was a nightmare. I was miserable and couldn't sit up or stand without the instant pain of this headache which caused me to constantly throw up. It went away the day after the blood patch was done thankfully but now I get a headache every time I have a dosage increase and was wondering if that's normal? 🤷‍♀️

I know the pain pump isn't going to take away all of my pain but is there a general dosage that seems to be the average for what most of you are comfortable with and if so, what dosage is that? I tend to have a high tolerance to pain meds for some reason (even when being put under with anesthesia I've woken up in the middle of surgeries more than once so I always make sure to tell my anesthesiologist before surgery just in case). Being at this 0.05% dose right now though isn't doing anything yet and with them only increasing it by a tiny bit each time I'm just wondering when I should be getting to a dose that is average for most of you with a pain pump? Is 0.05% low or is that high or did anyone feel a difference at that dosage amount? I'm just eager to be able to finally live again after 4½ years of being stuck at home in bed and unable to really get out of the house much.

Thanks in advance,
Steph ❤