Almost exactly seven years ago, I attended the pain management clinic for the first time. You can read all about it by clicking here.
I live with a condition called trigeminal neuralgia. At the start of this year, I was having pain flare after pain flare and ended up back on medication. This was devastating for me, as I really struggle to cope with the medication side effects. Around this time, I also started being sick for no reason, for a couple of days at a time, every two or three weeks, meaning I can’t keep my medication down.
I waited for this first pain management clinic appointment from my referral in February, managing to get an appointment for the first day in August, after a phonecall in the middle of June begging for help.
I know a member of staff at my local pain management clinic and she has done a presentation for my Regional Support Group at the TNA UK. I had been assured that the pain clinic now has a specific ‘facial pain team’ and that my experience will be more helpful than last time.
I was in a very bad place the last time I attended the hospital, but this time, I am seven years stronger.. But I still have trigeminal neuralgia and I still need some support that I’m not getting from any other medical professionals at this time.
I had to leave my doctor due to moving out of the area, then I signed myself up to the most awful GP surgery and now I’ve had to move to a different practice again, so I don’t even know who my doctor is now and I’ve given up hope that a doctor will ever be as lovely as my doctor was at my original GP practice. I also quit my neurologist, because the one I was assigned over lockdown kept telling me I had PTSD or migraines, but couldn’t seem to make up his mind between the two. I couldn’t face one more consultation with him.
I pinned my hopes on the pain management clinic for a little support.
I was referred in February, so I can’t say this is the quickest appointment I’ve ever received, but it was worth the wait. We covered quite a lot in the appointment and I was in the consultation for the best part of an hour.
Here are the things we discussed in my first appointment back at the pain clinic:
My medical history and medications, as I haven’t been seen at the pain clinic for seven years, when I was first diagnosed with trigeminal neuralgia and in an awful place mentally as well as on the wrong medication.
I was always more likely to experience pain as I’m hypermobile. This is something that my physio had briefly touched on when I was being looked at for my pelvic girdle pain. Apparently people with hypermobility are more likely to have chronic pain of varying degrees.
I have to stop looking for an answer about an underlying cause of all my medical conditions, for now at least. I’ve blogged about my journey in searching for an explanation for all my medical conditions, wanting to find a connection between my leg pain, my eye disease and my trigeminal neuralgia. In short, my doctor today said that I need to let it go for now. It’s a bit of a relief to hear someone telling me to stop looking. He instead said it’s what he calls ‘nerves behaving badly’, (obviously a very clinical term), which he says is just chronic pain. Just plain old chronic pain, no fancy condition, no cause, no fix, something I will likely have for the rest of my life.
We should focus on getting me some good coping techniques, which I will be able to get from the clinical psychologist I’m being referred to following this initial appointment.
I am, in his words, sledgehammering myself with medication for the very small amount of pain relief I’m actually getting from the medication. I can agree with this. My pain medication, pregabalin and amitriptyline, take the edge off my pain, but they don’t stop it and the side effects are really taking me down at the moment, especially with all the sickness where my body has to keep stopping and starting the medication again. The doctor said I don’t understand just how much strong medication I’m on.. and I guess I don’t realise this, as I’m just used to taking such a high dose.
All medications have side effects. The main question I’d gone in with was about different medication options for me, but after discussing medication I’d tried, the side effects I have experienced and currently experience, I would have the same problems on a variety of medications and I personally am not in a place where I am willing to keep stopping and starting medications and trialling new things.
After seeing the clinical psychologist, I will see the doctor in pain management again and I guess we will go from there.
Immediately after my appointment, I choose to stop taking the pregabalin completely and I’m not working on reducing down my dose of amitriptyline and working out what suits me best for now.
I would recommend asking for a referral to your local pain management clinic to see if they have anything available to suit your needs. It may not be suitable for your type of pain, but there is no harm in exploring it as an option, especially if you’re finding that medication isn’t working for you and you’d like a little alternative advice about pain management, rather than the surgical options, or if you’re struggling with medication side effects, like me.
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