Hey Cathieebee,
My name is Merl, I’m a member of the Modsupport Team here on Ben’s Friends.
TN has been one of my many differing diagnoses and like you, I too was involved in an MVA. The MVA occurred when I was about 4 and although I was informing others of an issue, it wasn’t identified. Over the years I’ve been given all sorts of what I call pseudo diagnosis ie ‘It could be ‘X’…’ or ‘It could be ‘Y’…’ but nothing confirmed. It was easier to simply label me “A S%#T of a kid” (and I certainly lived up to that label
) than to actually investigate.
Some 20+yrs later a possible cause was identified. I was driving down the road and suddenly I couldn’t see. This made them investigate a bit more. They found a growth in my brain and operated on it. Post surgery, well, somethings improved, but then somethings didn’t and I had some new weird and wonderful (NOT) side effects. I was sent to all sorts of medical professionals. In the surgeon’s view, ‘I operated, I fixed’, but this is far from fixed. But any issue was not to do with him. So I went looking for answer and when they could not give me a confirmed diagnosis, they came out with Trigeminal Neuralgia and ‘Nerve Pain’. I hate that term nerve pain personally, because all pain is nerve pain.
The trigeminal nerve is the 5th cranial nerve and it branches out over the whole skull. It separates up into 3 branches, the ophthalmic nerve, the maxillary nerve and the mandibular nerve. Pressure or irritation to any of these nerves can cause pain anywhere along the nerve tree. For example, I get some absolutely wicked headaches behind my eyes, but the surgeon insists he went nowhere near those regions. I saw an independent neurologist and he suggested ‘neuralgia’. He tried repeated treatments of Botox, but without success. He got annoyed when the Botox wasn’t the ‘miracle cure’ treatment he had promised. Over the years I’ve required a few neurosurgeries and the idea that my trigeminal nerve has not been damaged in the process would be impossible and this ‘could’ be the source. But nobody could give me a ‘Yes/No’ answer on that. It’s all could be’s or possibly or probabilities.
I was trialled on all sorts of medications. Migraine meds, Heart meds, epilepsy meds, psych meds etc I was up, I was down, hell, I was even sideways and some of the side effects were just nasty. I was sent to all sorts of dr’s all of whom had a differing diagnosis or a differing treatment plan, I trialled them all, but none of them were my ‘key’.
For me, I think part of the problem was that they were treating a symptom, but not the cause. So all of the medications were more of a mask than a treatment. The ‘nerve pain’ meds sent my whole system for a spin. Just horrible. I now avoid them. I know what works for me, a lower dose opiate. I can regulate my own use and maintain it fairly well. I have some high dose opiates here as well, but if I need to take them, I need a bed too, because those things wipe me out. If I’m still in pain, I need a hospital.
Now, I see you’re in Canada and believe that you also have access to medicinal cannabis. I’m in Australia and we too have ‘some’ medical access. I am not advocating it’s use but rather stating that I have found it beneficial. Some people report a painkilling effect, but it’s not so much a painkiller. For me, my pain is front and centre in my mind most of the time. With cannabis I find I can function outside of my pain. Sort of move it to one side, rather than have it front and centre all of the time. I’ve also found it helps lessen my use of opiates, which is also good thing.
How do I cope? The best way I can, for me. If that with meds, that’s what I use. If it’s with rest, that’s what I do. If that’s hibernating in a dark silent room, that’s what I do. And if it needs to be a combination of all of these… …I do that too. In my view, I have to manage this for ME. Not anybody else. Others may have an opinion (many do), I don’t care. This is about me, not them. I’ve offered all of this to anybody who wants it, but sadly had no one willing to take it all on
I don’t want it either, but here I am… So now I have to manage the best way I can for me.
Merl from the Modsupport Team