This blog follows on from one I wrote recently about Weight up the benefits of trying new medication for the severe chronic neck, back, shoulder and arm pain I experience due to spondylosis and fibromyalgia. Short story – it didn’t go well, I was that 1 in 10 who experienced side effects.
The medications I tried were a muscle relaxant and an anti-epileptic drug to treat my neuropathic pain. Both of these had a fairly similar side effect profile but had been recommended by my consultant at the pain clinic so I was hopeful.
I titrated both medications up each week and started to feel some benefit. I kept a really detailed diary of my symptoms and possible side effects. Given that the side effects are really similar to the symptoms I suffer day-to-day, it’s very difficult to tell the difference but I had a couple of awful experiences.
At the highest doses I reached I actually started to feel so dizzy I fell over a couple of times and was so sleepy during the day I was falling asleep at work. I considered pushing through because sometimes side effects like this only last a short time and wear off but I couldn’t function so I reduced the dose and realised that at the lower dose, I wasn’t feeling any pain killing benefit.
The worst adverse effect I had was when I had a teeny-tiny glass of wine, I experienced feeling drunk for the first time in my life! Let’s just say, my mind-body connection wasn’t functioning as it should – not something I will ever repeat willingly.
It’s really difficult to have experienced such an adverse reaction like this. Before I had a drink I didn’t feel particularly sleepy so thought a tiny glass would be ok. I rarely drink so I’m always carefully not to have very much. Within about half an hour I was fast asleep and as we were at a friend’s house, my husband had to help me home as I could barely walk. Fortunately, my friends were incredibly understanding and it was a simple case of sleeping off the effect.
It just shows trying medication isn’t as straight forward as thinking does it work or not? We put an extraordinary amount of trust in the pharmaceutical company to ensure they’re safe. These medications have been put under scrutiny in medical trials but new side effects can occur. (Interacting with alcohol is not a new side effect but a strong reaction like this will be very unusual.)
It feels like such a balancing act for me with multiple medical conditions to consider. I was worried about weight gain in my last blog. That turned out not to be a problem – instead, I was plagued with more fatigue, feeling unsteady, nausea and sleepiness that made daily functioning impossible. The trickiest conundrum was working out whether the symptoms were side effects or my fibro playing up?! The only way I knew in the end was that the symptoms improved when I reduced the medication. (But even then, it still could have been a co-incidence because my fibro symptoms wax and wane!) It almost felt like a game but there was absolutely no element of fun!
At the follow-up appointment my GP booked I explained that these new medications had been unsuccessful and I would prefer to be on higher dose opioids despite the bad press they get. She supported my decision because she could see how much pain I was in and having tried the less conventional medications, she agreed, paracetamol and opioids would be a valid choice for me.
There’s a lot of hype, particularly in the US about “the opioid crisis” because of their addictive properties but used correctly, under supervision, my GP believes I’m not in an danger. The side effects are also a known entity and we can manage them.
With the medication I take to prevent my migraines, it appears to work for about a week each time I increased it but then I would stop feeling the benefits. After increasing and increasing…at last, I seem to have reached a beneficial dose (and no noticeable side effects); I’ve only had 1 migraine in the last 2+ weeks… This is a massive improvement on getting them everyday!