Update and My Pain Management Crisis

I have an appointment with a new pain doctor on November 28 to discuss my ONS implant. I plan to ask him what he would do differently with my leads given my pain patterns and discuss pain medications. A big issue I've had since my surgery is that my headaches have gotten worse due to the bum lead placement and my doctor will not change my pain medicine type or dosage. I take only 1/2 the maximum allowed dosage per day and take one of the weaker opiate pain killers. I would even be open to changing my anti-convulsant if he thought that would help, but he seems to think the medication combination he has given me is the best option out there.

If I stay perfectly still on the couch all day, the pain meds I'm allotted per day handle my headache pain. If I try to crochet, drive to the doctor, go out to eat, try to eat any meat or hard and crunchy foods, or even run to pick up a prescription, my pain is much too intense to be managed by my meds. I told the PA at my pain doc that since the surgery when I put on sunglasses or brush my hair on the left side, my entire left AT and left lesser occipital nerves feel like they're on fire for hours and that I needed something different to control the pain. All she said was, "Huh. I don't know what that is. Guess you should ask the doctor. Make an appointment in 4 weeks." I drove home in tears.

I know I should have pressed her harder, but I've been begging them for months to change my pain meds because they just were not controlling my pain to a manageable level and they have ducked and dodged that request over and over. It's frustrating because I feel like I've proven that I want to help my pain without pills by having so many nerve blocks, ablations, epidural steroid shots, alternative treatments, and finally the ONS implant. Additionally, I have 2 other friends who see my same doc that are able to live fairly active lives and get much stronger pain meds than I have for lesser conditions.

This is a frequent complaint I hear from other chronic pain patients. It's strange to me because oftentimes you hear about our country's over-prescribing problem and how oxycontin is given out like candy by some doctors, but most people I know with chronic pain can't even get non-opiate pain relievers from their doctors. This is a subject I know is contentious. I have addiction in my genes and have watched family members struggle with it, so I did not undertake the decision to go on opiates lightly. I also know that there are irresponsible doctors out there who do hand out oxycontin for a muscle ache. Despite these issues, I don't think that means pain doctors can ignore their patients. If my doctor thinks he really has done all he can do for me, he should tell me that and refer me out.

Well, I'll get off my soapbox now. I have a big week coming up with car travel back home to see my parents for Thanksgiving. Riding in cars is one of the worst things for my pain, so it will be a difficult couple of days. However, I get to see my 11 month-old niece and she's worth the pain it takes to get there. :) I hope everyone has a great Thanksgiving and can focus on gratitude despite the pain you're feeling.