By Dyl J, Bud Tank
I have a diagnosis of temporal lobe epilepsy. I do not have convulsions (and hopefully never will) but I have what is called simple partial seizures. I have intense deja vu and nausea. On busy brain days my memory is nearly non-existent. My moods change and I can go days and days feeling like I haven’t slept, and I become unsure of myself and my surroundings. Life gets weird and hard. My family, friends and loved ones have all been affected, seeing me depressed and anxious, hearing me crying because I just want it to stop so I can enjoy a moment or two, not knowing if I’m going to be able to communicate much today. It’s all stress but they have stuck by me and my choice of treatment.
My triggers are unknown but stress, lack of sleep and alcohol are the ones I have identified from having multiple seizures over the last few years. It is something I have lived with all my life but it was not until I started having clusters of seizures that I realised there was something going on much deeper than urine infections (this was the conclusion of doctors when I was taken to A&E as a child on several occasions). When I went to see a neurologist I was prescribed carbamazepine, stripped of my driving license and handed a leaflet. I sat in the pharmacy staring at a prescription thinking this isn’t the life I’d planned out.
I used cannabis recreationally but not as often as I used alcohol. I believed in the medicinal benefits and was against prohibition as it helps more than harms. I started to speak to people with the same illness, to reassure myself I wasn’t crazy and to find people who were having success with treatment, but I didn’t find any. I started to research cannabis and epilepsy, looking for people who were having success and – guess what – I found a lot.
I learned that THC has been found to protect neurons, help with sleep, and help with mood. My biggest worry as a temporal lobe epilepsy patient is losing my memory to the point that I can no longer look after myself. I had to change my approach to cannabis as not the social ‘drug’ that is to be enjoyed in groups on special occasions, but a medicine. I needed my life back.
I used to only use cannabis when I could (at night time) and break the law part time. I couldn’t see why I was struggling so much with seizure activity on bad days, usually when I was in work. Now I break the law all day every day; I’ve not been completely seizure free but now I have energy, I can sleep better, and I can stop hiding my illness with sick days. Once I started using cannabis as part of a diet, I stopped getting the negative side effects I used to experience – anxiety, the feeling of ‘needing’ to medicate. All that stress of worrying if it’s going to happen today, that’s gone for the most part.
I work full time, help run a club, take care of those around me now that I can take care of myself. I smoke, vape, eat, dab pure cannabis. However I can administer it, I will. Just for the record, I consume high THC, home grown cannabis, all day every day, mixed with whatever CBD oil I can afford. I have been a victim of that ‘nasty super skunk’ for six years now, and life hasn’t been better.
The way I see it, if I constantly have cannabis in my system I am one step ahead of my illness, and the proof is in the pudding. I’m happy, I have my license back, I see my neurologist once or twice a year, and I don’t pick up my prescription for carbamazepine.
The thing that would really make me feel valued as a human is for the Misuse of Drugs Act to be squashed, and for me to be allowed to grow my own. I’m not doing any harm to anyone.
This article was first published in The Quarter Leaf issue#1.
