March till early July was filled with experiments for adjusting my medications. It was pretty terrible. I was trying to reduce how much pain I was in. Particularly in the afternoon when I couldn’t focus, and at night when I was trying to sleep but couldn’t. Unfortunately when I talked to doctors about it, the only answer was to experiment. Make a change. Wait three weeks. Evaluate. Then try the next thing. I took a lot of notes that I have spread all over the place. I thought I would rewrite them here since I will likely have to do this again in a year or so.
March 1st – My starting point
- 3mg Tizanidine at night
- Prevents leg spasms, twitching, spasticity.
- Before starting this in 2017 I was almost falling down multiple times a week due to my legs twitching randomly while walking.
- Makes me super tired, and makes my muscles weaker.
- Changes to this drug badly screw up my sleep and make my legs twitch. I’ve fallen down in the past soon after making changes.
- At one point was up to 6mg. Made me so weak that I could hardly walk up a flight of stairs. Couldn’t really stand up on my toes at all.
- Goal: get off this entirely.
- 1200mg Gabapentin at night
- Makes me tired and sleepy.
- Lots of extra pain and twitching when I change it. Also causes insomnia, dizziness, and depression.
- Controls nerve pain for a period of time. Somewhat helps spasticity.
- I’m on the highest dose I’ve been on. Tried stopping in mid-2019 when I hoped I could just use Tizanidine. Did not go well.
- Goal: just rely on this for pain and spasticity. Spread it out across the day to better manage pain.
- 30mg Cymbalta in morning
- anti-depressant and can also help with nerve pain.
- unlike Gabapentin, it definitely doesn’t make me sleepy.
- In 2018 when I started it I had two months of terrible stomach problems and muscle problems.
- Goal: Last resort is to increase this if the Gabapentin makes me too tired during the day.
- Vitamins: quite a few all at night
- Melatonin: 6mg slow release at night to try and keep me from waking up.
- Pain on a 1-10 scale: starts at a 4 every day. Almost always a 6 by 2PM at which point I could hardly focus on anything. Most nights also in pain and it got in the way of falling asleep.
- Sleep: averaging 5.75 hours a night. Often alternating between 2-3 hrs and 10 hrs.
Ideally, make a small change, wait three weeks to evaluate and then make the next one.
|Date||Change||Result before next change|
|March 13||Add 300mg Gaba at noon; 1200mg at night; 1500mg total.||– Legs very weak. This is too much Gaba.|
– Nerve pain reduced
– Initially very tired, but sleepiness did slowly get better
|March 23||300mg Gaba at noon; 900mg at night.||– Legs still weak. Need to reduce weakness.|
– Nerve pain ok-ish. Still there at night sometimes.
– Had to back off and stop most PT.
|April 10||Stop Tizanidine. Try and reduce weakness||– So weak, so tired. Especially later in the week.|
– Sleeping really poorly. Maybe Tizanidine was helping me sleep more than I thought.
– So confused. Pretty depressed.
|May 11||Move vitamins to noon. Maybe my vitamin D is causing insomnia? Or some other vitamin waking me up.||– Kept getting worse.|
– Even more tired in the afternoon.
|May 29||Move all magnesium vitamin to night, maybe making me sleepy?||– Nope, still crazy tired|
|June 7||Move 300mg Gaba from noon to morning. Maybe that is making me sleepy and the Cymbalta will counteract it.||– Nope.|
– I feel positively sick after I take my vitamins. Tired and nauseous. Getting worse.
|June 8||Vitamin D toxicity? I increased it in Nov 2019. Stop all vitamins! Gaba 300mg morning; 300mg noon; 600mg night.||– Hooray!|
– Still tired, still pain though.
|June 13||Let’s add back in multivitamin||– Nope. Terrible idea. Nausea and super tired immediately comes back. Vitamin D was building up in my system over months and slowly making things worse. Will take months to reverse.|
|June 22||Gaba: 300mg 12pm; 300mg 5PM; 600mg PM. Try to target afternoon pain and evening/night pain.||– Kinda helped. Still tough to fall asleep.|
– Learned: Gaba absorbed in small intestine and has a 5hr half life. So…
– 3-4 hours for Gaba to fully hit me. This is when I am most tired.
– 300mg reduces pain for 5 hrs.
– 600mg reduces pain for 7 hrs.
– 300mg at 12pm => pain reduction 2-7pm
– 600mg at 5PM => pain reduction 7p – 2a
– 300mg just as I am falling asleep => pain reduction hopefully to 6 or 7a.
|– This is pretty much working.|
– My sleep is still a mess, but not really due to pain anymore.
– Sometimes tired in the afternoon, but I think better than being in pain.
– Able to start up rehab and PT again.
|July 21||Stop slow release melatonin. Only use fast melatonin to help me fall asleep. See if I can reset my body’s sleep cycle to work correctly.||– Seems to be working so far.|
Experimenting with meds is so non-linear. You can’t really A/B test it because everything is always changing. What I assume was vitamin D toxicity would have hit me hard then either way, but it was very confusing.
Where I’m at
- I cut out a drug: Tizanidine. Yay!
- In March I also stopped using knee braces which is a big deal.
- Completely stopped vitamins. Seems not great
- I moved around Gabapentin.
- 8 days in July where my pain started at a 3.
- 16 days in July where the pain maxed out at a 5 rather than a 6.
- Definitely super tired, but my sleep schedule is getting a bit better.
- PT has restarted and is kicking my butt again. So sore. Terrible balance and tough to do my 10 minute walk the past two days because I overdid PT.
Now on to trying to fix my awful sleep patterns. After discussing the efficacy of my watch tracking with my sleep doc, I decided to go crazy and buy one of these. That’s a different blog post though…