Cannabis and Pain: an update after almost three years with Stiff Person Syndrome

[DRCousCous]

Hi everyone, checking back in here, hadn’t realized last time I posted about the medical side was more than a year ago. I primarily use cannabis products for pain mitigation and to reduce spasticity and stiffness. I have a disorder with a really stupid name, but it pretty well sums it up: untreated, my muscles spasm to the point where I can’t bend (or unbend for that matter). I share a lot of symptoms and treatment similarities with people who have Progressive Multiple Sclerosis (primary or secondary), and will eventually share symptoms and prognosis with those suffering from Motor Neuron Diseases.

But, for right now, I’m doing the best I can to live my best life and be present for my wife, son, family, and friends. And we’re doing ok, all things considered. So, here’s the MMJ part. I have to take benzodiazepines, muscle relaxants, Gabapentin, and some other CNS depressants four times a day to keep the muscles from locking up. What I do not want to add to the mix is opiates for pain. Opiates + Benzos is a recipe for disaster, and I have a hard enough time with depressants (and depression) as it is. So my doctors suggested MMJ as a way to help with spasms and, perhaps, mitigate the pain. Three years after those conversations, I’ve figured out some things that work for me:

1) I primarily use industrial hemp CBD and CBG products from federally licensed growers and distributors: I vape dry herb CBD and CBG; and I infuse oil from CBD and CBG bud.
2) I supplement with THC cannabis from a local dispensary when pain and misery get too bad, or when I absolutely can’t sleep: again, I vape dry herb and infuse oils.
3) Now that CBD resins and rosins are available on the market, I’ve started dabbing (primarily rosins) more frequently. Again, I’ll resort to THC live resins (can’t afford better) when I have to, although it usually knocks me out and makes me unpleasantly high (I know, that sounds ridiculous).

When the pain is really, really bad (from persistent spams or muscle/ligament tears), I find the best solution is 1:1:1 (by cannabinoid) vaping or infusions of CBD:CBG:THC. On my current pharmaceutical treatment regimen, I’ve cut waaaay back on the THC due to its bad combination for me with Gabapentin (racing heart, borderline panic attacks, and I already have enough panic in my life). I’m really grateful that CBD and other cannabinoid products are becoming higher quality and more widely available now that they are federally legal.

Anyhow, just wanted to let the medical section here know I’m still alive What do you all do for pain when it gets ugly?

 

[farmerpalmersnt]

I'm not in any way coping with a comparable illness but have lower back pain/spasms and coccydynia since a motorbike accident 20 years ago. It gets very painful. I was also on gabapentin and it wasn't my friend. Certainly not alongside THC but just generally.

Since getting my prescription for medical I have stopped gabapentin entirely. So now I just hit the THC hard when it's hurting. Not the pharmacy supplied mids though I have to admit Have you spoken to the doc about gabapentin alternatives?

 

[Knewt]

I also kicked gabapentin out of my life. It never helped with my problems and I begin to really hate the way it made me feel. I have to be careful what strains I vape at different times of the day, but I keep enough different strains on hand that I can usually find my happy place.

 

[DRCousCous]

INRE @Knewt @farmerpalmersnt points about Gabapentin, you’re right: I hate the stuff. Unfortunately, the basis of my degenerative condition is chronic, incurable damage to the GABA receptors in the motor neurons in the brain and alpha cells of the pancreas. So it means my core muscles won’t shut off, and also means I have a strange variety of type 1 diabetes (yay!). But the GABA receptors being degraded means I don’t produce enough of the right chemical to stop my muscles from contracting (so 24-7 muscle spasms in my hips, groin, abdomen, and the muscles along my spinal column).

Gabapentin becomes GABA when it is metabolized, so it’s one of the primary medications for SPS (along with diazepam and baclofen, which directly stimulate the GABA1 and GABA2 receptors). I may try to reduce my quantity of Gabapentin to see if it lets me use THC meds again. Although I don’t like getting high, I really do benefit from consistent THC in the system (used to use edibles in the morning and then mix CBD and THC weed to vape throughout the day). It keeps my muscles pretty relaxed. But, when combined with Gabapentin, it makes it hard to breathe and causes near instant panic attacks.

Anyhow, it’s a moving target to try to keep meds at the right levels and the right kinds to stay as comfortable as possible. My wife and I both don’t like it when I’m “stoned,” but it’s better than being in pain all the time and not capable of doing anything. So maybe back to the chemistry lab to get the mix right…

 

[farmerpalmersnt]

Not my area but have you tried tiagabene?

 

[DRCousCous]

Not my area but have you tried tiagabene?

I had not heard of that before, and will talk about it with my neurologist. It looks like it might work with Gabapentin at a lower dose as an adjunct therapy. Scanning the side effects list, however, it has a host of similarities with neuropathic pain medications I can’t take due to having SPS… one of the ways the doctors figured out what was going on was because I was prescribed Lyrica for neuropathic pain, and it caused a whole bunch of further motor neuron issues to come to the surface. The Gabapentin works for me for pain and to reduce spasm/convulsion frequency and severity, but goddamn I hate that it makes me sleepy all the time and takes what had been the most effective pain and spasm control tool I had (THC) off the table.

Thanks for the heads up on that one, will check it out with the Doc. One of the things that they have brought up (off the record) is using small doses of psychotropics (psilocybin, psilocin, and/or DMT), as they saw some dramatic pain and depression reduction in patients with neurological disorders during their fellowship work. I mean, if I end up going of Gabapentin, vaping THC weed all day and eating shrooms… I’m going to have a hard time thinking I haven’t lost thirty years and back in undergrad again .