I started writing this in January and have been debating whether or not to put it up now or after I’m done with the prompt list I’ve been working on for a few months. I’ve decided to put it up now for my sanity because I’ve been getting asked a lot of questions.
This post is strictly going to be on the educational variety and aimed at challenging misconceptions and total myths about being on medical marijuana.
I will link to articles, research, and anything of relevance. This is not meant to be staunchly advocating the use of medical marijuana (it’s truly not for everyone), but to provide information to those who seek it from the viewpoint of someone who has seen the absolutely powerful and life-changing effects first-hand for almost half a year. I will include many of the questions I personally had prior to my first trip to the doctor and to the dispensary. Dispelling myths is what I strive to do… and there are sooooo many myths. I will discuss medication in general.
Because of length, I’ve decided to split this in two. The first part (below the cut) describes my journey towards finding an un-orthodox method that works. Part two will be geared at dispelling the false misconceptions about medical marijuana (namely, the fact that it doesn’t get the patient high, and the science-backed benefits). Part two has many links to other sources. I feel like this is a rational way to split this. Part two will be up tomorrow after I’m done editing for grammar. So check it out under the cut.
Pennsylvania legalized medical marijuana in April 2016, with it first becoming available in February 2018. A quick overview of the Commonwealth’s program can be found [here]. There is some really good information on that site, which is run by the PA Department of Health.
First, my experience leading up to making this relatively challenging and life-changing decision.
I have personally been a patient since November 2018 and have been fairly open about the process to anyone that’s asked because I do feel like it’s given me my life back.
There is a short list of conditions that qualify in PA and I qualify under having “intractable” (unmanageable or unpredictable) seizures and complex-PTSD following my assault in November 2016. It was pretty much a last-ditch effort to give me a quality of life while avoiding throwing any more medication at my system. After my assault, my PTSD went into overdrive. I couldn’t leave the relative-safety of my ex’s living room and then my bedroom after I was able to move and everything was setting me off. I was having constant anxiety attacks and nightmares and flashbacks to the point where I wasn’t really functioning at all. And I didn’t have substance to curb any of it because I had made the decision to remain abstinent. My cat was helping me keep it almost together most of the time. It was absolutely horrendous. And then there was the blackouts. Periods where I’d space out, lose time, and come out of them confused and exhausted. Feeling like I’d been hit in the chest and head with a boulder.
The blackouts where initially thought to be periods of dissociation following anxiety attacks and my diagnosis was updated to complex-PTSD shortly after to account for decades of trauma and I was put on a medication called Prazosin (Minipress). Prazosin has greatly reduced the amount of nightmares I’ve experienced to an almost manageable amount, but it hasn’t eliminated them completely. And then there’s still the blackouts. I was having them sporadically and it was weird, but not enough for me to be suspicious of anything. Nothing like I’d ever experienced before. They started about a week after my head injury, and became progressively more frequent. I was diagnosed with prolonged post-concussion syndrome after 6+ months of still having concussion-like symptoms with no foreseeable slowing down. At their peak, I was having 3-6 per day. I was constantly exhausted and in fear once I became aware of their frequency and starting keeping a log for my psychiatrist. There was also the severe migraines and nausea that was my new “normal” for several months. A concussion alone couldn’t explain these symptoms at 10 months after.
I tried working again in Spring 2017, a few months after my head injury, because I’m stubborn. About three weeks into the assignment, I was on bus aide duty picking up campers in the morning. I had a blackout on the bus on our way, and when the driver and I stopped to take our pre-picking up people smoke break, I was completely unresponsive. The driver asked if I had a seizure disorder. He went on to describe that I was staring out into oblivion and nothing was snapping me out of it, not even splashing water in my face.
I was completely confused, and a tad defensive, at that question. And honestly too confused and exhausted to understand anything he was telling me. Lamictal has been one of my primary mood stabilizers for several years. It is a strong anti-seizure medication in addition to being a solid mood stabilizer and many respond to it very effectively. Surely, if I was experiencing seizures, they’d be controlled by the Lamictal? Plus, I was completely ignorant and uneducated to the fact that seizures could happen outside of an epileptic disorder or that a brain injury could trigger them. So I told my psychiatrist what the driver had observed, and he suggested I see a neurologist after I had a blackout in his office. He put in the referral and a few weeks later, I went to the neurologist. My dose of Lamictal was raised as a precaution. It lessened the duration of the episodes, but not the frequency or the exhaustion immediately following.
At this point, I found myself nearly a year sober and absolutely miserable.
The neurologist immediately suspected seizures after getting my history and the description of how these episodes presented. She ordered a bunch of brain scans (MRI, EEG, and several others that I don’t remember) and pulled a metric fuck-ton of labs. I remember having about 5 vials taken one day. She also put me on Propranolol (daily) and Sumatriptan (as a PRN) to lessen the effects of the severe migraines that were causing me to throw up almost daily. I didn’t know much about either medication and definitely did a lot of research on the benefits of both.
Fast-forward to the results of the brain tests. First, Chiari’s syndrome was diagnosed. It explained some of the headaches and the susceptibility to tinnitus and a bunch of the other symptoms. And second, with pretty convincing certainty, seizures. Acquired traumatic brain injury. I learned quickly to expect the worst when the doctors ask me to make an appointment ASAP. And this was no different. I spent the rest of that weekend after that phone call in pure terror and anxiety.
I remember sitting in that office feeling relief… and fear. A lot of fear. I didn’t want to believe the results. Just like I refused to accept my bipolar diagnosis a few years prior. The neurologist showed me the pictures and did her best to explain what I was looking at. She also showed me a scan of a “normal” brain. And then explained the differences between mine and that brain. My Lamictal was nearly doubled… to absolutely no effect besides making me exhausted. For nearly a year after, we tried all sorts of things to try to make me comfortable. Anti-nausea meds. Sedatives. Changing my Vistaril to a twice a day dose instead of as a PRN. Changing my Xanax to a half dose every other day instead of as a PRN rescue med. Nightly melatonin, which made me paranoid and manic. I was having sometimes 6 or 7 per day on really bad days and 2-3 on great days. They were not only unmanageable and unresponsive to usual treatment… but highly unpredictable. I was having the bulk before noon, but I had many later in the day, and who knows how many while asleep. Each one causing more brain damage. I had my scariest episode on the El one day going home from a show. I came to at 69th St Terminal, several stops from where I was living at the time. I didn’t know how I got there. The Septa employee asked me several times if I needed to go to the hospital because I was unresponsive for almost 5 minutes. Thankfully, my instruments weren’t stolen! But I was exhausted and confused and terrified. I could’ve ended up in a worse part of town or had my horns stolen or even worse. If I had one at home, I’d come out of it with Lilly on top of me trying to comfort me. At one point, I became suicidal and was inches from being hospitalized.
In comes medical marijuana.
I was running out of options, miserable, suicidal, and constantly exhausted when it was first suggested that I look into it. That was around June of last year. After months of research and asking a ridiculous amount of questions… After all that and knowing that I qualified in PA, I made the decision to try it and had my first appointment around my birthday in October. If it didn’t work, it’d be back at trying to find another solution. (some of those “solutions” are invasive and could lead to all sorts of things, namely paralysis or losing my bodily autonomy) If it worked, then I’d have a better quality of life — with seizures under control first and foremost, and some of the more intense PTSD symptoms more controlled. I asked more questions. I was up-front about having been sober for two years at that point. I’ve never had a problem with weed, nor is it something I actively seek out, especially when I had practically an unlimited supply of cocaine and molly at my disposal. I spoke to countless amounts of people (both in recovery and not), many of whom had done no research and/or simply dismissed it as being some kind of excuse to get high (part two of this post will explain why this isn’t the case — in short: No THC = no psychoactive effects = not getting stoned/high). The amount of stigma and misinformation continues, which is what drove me to start writing this [note: I started this post around the end of January from the last timestamp and just let it sit for a few weeks]. But it’s purely medicine, just like anything else.
Still, despite those staunchly opposed, a majority of those around me and my most close have been overwhelmingly supportive, especially those who had been there while I’ve had a seizure or a severe psychotic episode or were there as I got dangerously close to attempting suicide by train. Many have since done their own research and have offered words of encouragement, love, respect, support.
As for the benefits? When I went a full day without a seizure a few days in, I tried to justify it as a fluke or at best, a placebo effect. Then I went another day. Soon it was a week. I couldn’t believe it. After going over a year with unpredictable episodes, I went an entire week without one. I never imagined being without the lost time ever again. Since November, I’ve had four total seizures, [note for transparency: that number has increased to five since starting this] and one that was more than likely a severe anxiety attack. From someone who was having 3-6 per day? This is the closest thing to a miracle than anything. Averaging less than one per month is just undeniably incredible. And less seizures = less continued brain damage.
I’m on less psych meds than I’ve been in over 5 years. Less meds = less adverse reactions and side effects. Some of the more pervasive PTSD symptoms are practically non-existent. I’m having less flashbacks throughout the day. I’m doing better being back in tight spaces. I’m having less trouble around people again. I’ve had significantly less nausea. I’ve only needed my PRNs/rescue meds sporadically. My sleep has, generally, been more regular because I’m not constantly having nightmares. I’ve actually had a bit of an appetite after losing nearly 100lbs in a year and a half on the anxiety/bipolar/anorexia/food-insecurity “diet’. I have much more mental clarity without being bogged down with exhaustion, panic, confusion, and everything that follows every seizure. All things above and beyond my initial expectations.
My quality of life has dramatically changed for the better in a very profound way. I’m not living in constant fear of the next seizure or PTSD episode. I can actually return to living instead of just existing. And I’m not walking around like a stoned zombie all day, either. (I’ll elaborate more in part two…) But medical marijuana doesn’t get a patient high. That’s major misconception number 1. There’s virtually no THC, the psychoactive chemical commonly found in a marijuana plant that is definitely a drug. And unlike most other medications (besides maybe aspirin), it is not man-made or purely chemical. It is a natural medicine. I guess some people don’t see the point of weed that doesn’t get ya high, and that’s where this myth lies. The stigma surrounding it is detrimental to those that could benefit from it.
But I’m living proof of the benefits. A total success story. Of endless possibilities. Of having reclaimed my life because I took a chance at a long-shot when nearly every other route ended in failure.
Part two will focus on dispelling myths.