My therapist set me a goal for this week, to only journal about myself. It’s been noticed that often my sessions are filled with me talking about others, and very little about me.
I’ve tried to give it a go, but honestly my pain and fatigue have been so high that I’ve not tried in ernest to do this task.
However, because my pain and fatigue are so high, I decided to read the information leaflet that came with the Buprenorphine patches from the pain clinic. This led me to do a little googling and now I find I have to write, right this moment, to shift the emotions rolling through me before bed.
What I found was that Buprenorphine has a moderate drug interaction with my Mirtazipine because both suppress the nervous system. It also comes with a small risk of inducing Serotonin Syndrome. I thought to myself, well that doesn’t sound very good.
It also reminded me of when I was first put on Pregabalin, and I found the slightest change in dose made me quite dizzy and feeling high. I was gaslit over this by the in-house pharmacist at my doctors surgery, and the doctor said “it’s fine, it just means you won’t need as high a dose of pregabalin as others.” Why didn’t I raise this as a red flag then? The fact that no one thought to mention this interaction to me before prescribing pregabalin, and why it was brushed under the carpet after.
Having this memory come back to me made me decide to look up interactions between Buprenorphine and Pregabalin. There is a MAJOR drug interaction listed, due to the central nervous system depression, and the combination of the two could potentially put me in a fucking coma or lead to death. A COMA! DEATH??
Could you imagine what the combination of all three would do? Likely significantly increase the risk of these frankly terrifying outcomes.
When I had my call with the pain clinic, and he ran down the few options available, the leading two were Buprenorphine patches and medicinal cannabis. We discussed the risk of MCAS reactions from the patches, as they release histamine, along with my reluctance to use opioids given how intense the withdrawals are from pregabalin. But I made sure I asked if they had any interactions with my current medications and supplements but was assured they were safe in that area.
Maybe I’m overreacting, I’m exhausted and my pain really is quite horrendous, but a risk of a coma, seizures, respiratory distress and potentially death, doesn’t sound all that safe to me. Quite the opposite in fact.
I’ve been sitting on these patches for a little while, a break glass in case of emergency option. Well it’s a good job I read everything before taking anything now.
The second option from the pain clinic, medicinal cannabis has its own draw backs too. For instance it’s only available with a private prescription, with an estimated cost of £100 per month. I just don’t have £100 per month.
Of course I could do the illegal route, but I’m not young and hip anymore. I’m not afraid to admit I cannot deal with the anxiety of illegal drugs these days, I’m too old and tired. I’m also too emotionally aware now, and I know I’ll panic all the time.
I’ve looked into funding options, and there are some options if I did choose this route…the legal version of this route. The reality is that if I’m going to try something, I want science behind it and I want supervision. There’s been too many fuck ups with my care in the last 5 years, too many problems with pharmaceuticals , including the pain clinics blatant and most monumental cock up. But, I also don’t want to be sat at home, high with the munchies. I want my pain at a bearable level and I want to actually sleep through a whole night without it waking me up.
I’m angry and disappointed. I ordered the patches about a month ago, at 2am, whist writhing in bed in unbearable pain. I suffered like that for 2 whole weeks, and now the pain is returning to those levels. I can’t help but think what could have happened if I hadn’t of read the leaflet tonight and instead found myself reaching for a patch at 2am out of desperation.
It doesn’t bear thinking about, yet it’s all I can fucking think about. I’m usually asleep by now, I go to bed at 9. But tonight it’s not just the pain keeping me awake, it’s the worry of the what ifs. It’s the worry of the other patients being failed in this way, patients who don’t bother to read information for themselves because they blindly trust anyone with a doctor title. The older generation who perhaps don’t even know to research online, or even know how to. A doctor tells them to take another medication, on top of their other medications, and doesn’t check if it’s actually safe, or inform the patient to check if it’s safe.
It’s also the anger of another failure, in a long line of failures in my care in the last 5 years. But this failure could have resulted in my death. This failure could have led to me not seeing tomorrow, or my friends and family visiting me in hospital in a coma, being kept alive by machines.
I’m not sure what to do with this information, but I had to write on it because I have to be as calm as possible to improve the chances of sleeping, and because not releasing these heavy emotions makes my health issues worse. I’m just really sad to be back at square one, without a “break glass in case of emergency” option again.