For the past 18 months, I have been celebrating the reduction of prescription medication. Since installing my spinal cord stimulator from Saluda Medical, I have reduced my pain medication by 50%—honestly, much more remarkable progress than I expected.

Below are a picture and infographics about my implant.

Every three months I see my pain specialist at Sydney Spine & Pain for a review, check on the stimulator and an open discussion on the reduction of my pain medication. We discuss the decrease in my pain patch, whether to juggle the medicines for neuropathic pain and mapped my pain levels since we last talked. And when needed, reprogram my device with the Saluda Medical technicians (who BTW are amazing). My goals have always been to reduce medication and maintain my mobility. We were always trying to balance the pain and my fatigue.

It’s been a good 18 months, pain-wise. Honestly, I haven’t focused on my Functional Neurological Disorder (FND) conditions. I tolerated the constant muscle fatigue, leg tremors, knee drops, and balance and coordination problems. As my pain levels decreased, it was a win and cause of celebration, and I kept powering on.

Although reflecting on the past 18 months while in hospital, I’ve begun to remember; that although my pain has subsided and better managed, I have either ignored, joked away or refused help for my FND conditions (see below for previous blog post on this).

http://jeramyhope.com/2022/09/10/my-fnd-journey/

Wind back 21 days ago, I saw the need to head to the hospital due to my FND symptoms. However, chronic pain was on the increase. These past three weeks, I’ve started two new anticonvulsive medications, one controlling my neuropathic pain and the other targeting tremors. And unfortunately, I have needed to increase my chronic pain medication significantly (strong opioid-based medication that no one likes talking about). I reviewed my discharge papers and referrals, and my medication increase is equal to that before my spinal cord stimulator (at times greater). This increase was proactive (taking pain relief before therapy sessions) and reactive (needing immediate pain relief above what was scheduled).

https://jeramyhope.com/2022/09/15/a-day-in-rehab/

I also read the information sheets provided with the new medication, along with a long surf on the web, riffling through journal articles, blog posts, and pharmaceutical publications. My main search is side effects, am I going to put on more weight, will I struggle with fatigue, will it affect my sleeping, my stamina? I then read if the drug is additive, used as a recreational drug, and how severe the withdrawals are when ceasing the medication.

A few years ago, I was required to take two alternate medications to combat withdrawal symptoms while titrating off my current ones. That messed me up.

I also look into the social impact of these medications. Will it affect my mood, will my personality change, the way I interact with my family, and can I still work, and if so, will people notice any changes in me? A constant juggle and worry, and one that for years I only worried about for my kids and their journeys to find the right medication therapy.

As my tremors subside and my fatigue reduces, I can see a time when we start the medication reduction journey again, but for now, it’s the only thing enabling the therapy sessions and sleep.