Okay, I admit, the title of this one is a bit ironic. There is nothing fun about having someone stick needle probes into the back of your scalp, and then dig them around under the skin, through muscle, and cartilage, until they find a nerve, and zap it. It hurts, even with anaesthetic (which by itself hurts a bucket load when it is put in), and is disconcerting (have you heard the crunch of what I assume is cartilage, or muscle giving way to the pressure of a needle, right in your ear drum? The lesser occipital nerve runs right near there, so it all sounds very loud)..

Today was my 3rd treatment of radio-frequency, and 5th surgical treatment all up in the past 5 or so months to try and get my pain levels under control and to a point where they are manageable.

At the moment it is about 4 days a week where I have a migraine type headache, it’s worsening and the treatments have only given very limited relief. Truthfully, I have reached the point where at times I have felt strong suicidal urges, based not on depression, but on the sheer exhaustion and fear that I have reached the stage where I can no longer tolerate the high degree of pain and am terrified of how soon I know the next attack will be, and for how long it is likely to last.

My husband is taking so much time off for carers leave to run me to the hospital, but also sometimes to take me to doctors appointments, where there is so little they can do. I’ve mentioned before that I am very sensitive to medications, and unfortunately there are no painkillers available to me outside of a hospital admission. Even then my options are limited, as I do not react well to most treatments and often the side effects are as bad as what they try to relieve (Morphine for a headache sounds great right? Not so much when you then start to feel dizzy, itchy, hot, sick – you almost wish you had your headache back and the side effects gone)!

Today my surgeon patiently spent a lot of time trying to fine tune the therapy – as I said above, it hurt and was very disconcerting, at one stage I let my mind wander to what was happening and started to feel so unwell – I thought I may be sick in the theatre. Thankfully though I’ve honed some lovely skills through CBT to settle that kind of anxiety, and was able to use mindfulness to settle down.

As each operation has failed, my hope for any help to deal with this pain has become a little weaker, a little more hopelessness has stolen into me. That feeling that there are becoming less and less options for relief has made me feel more and more desperate.

On the positive side of things though, the nerve block to my suprascapular nerve was very effective and gave me several weeks relief from the pain in my shoulder blades, shoulder, and arm. So that is very much a win, and I am thankful for that!

Here is to hoping that this time the procedure will help. The fear of living with such painful attacks is becoming as crippling as my depression was before. Please wish me luck, and hope!


4 Comments Add yours

  1. The best of luck, the procedure sounds very painful 😖I hope that you manage to get some respite from the pain x

    Liked by 1 person

    1. Thank you so much for your well wishes. It means a lot. Xx

      Liked by 1 person

  2. Cindy says:

    Pain can be incredibly scary, especially when it’s on an increasing trajectory. I have a chronic headache problem, too, and trigeminal neuralgia. I’m hoping to try burning those nerves in the face. Thinking of you and hoping you find relief soon! ❤️

    Liked by 1 person

    1. Thank you Cindy. I feel for you too. My occipital neuralgia gives me incredible pain that reaches in my eye and even into my cheek, I can only imagine how painful trigeminal neuralgia is. It encompasses so much more.

      I hope you get relief from your procedure!



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