I had a really shitty week last week, 3 days feeling crap after the flu jab and then Occipital Neuralgia reared its ugly head with one of the worst flares I have ever endured and it is still bad now as I write this.
Occipital Neuralgia is something I have dealt with for years. From about the time I was a teenager I would get random electric shock like pain in the back of my ears. It would happen so infrequently I never did anything about it. The pain really did make me take a sharp intake of breath, if I was talking as it happened, I would have to stop and wait until the pain subsided. I was lucky I would maybe get a hour with 5 or 6 bursts of pain and then it wouldn’t happen for months or weeks. It was like that until I had my spontaneous CSF leak and then the sharp electric shock like pain was accompanied by a constant throb at the back of my head that sends my forehead into spasm, which in turn triggers migraines. Last week was utterly miserable.
This link, if you go right to the bottom of the page shows where the Occipital Nerves run and basically that is exactly where my pain is. https://aneskey.com/occipital-nerve-block/ . When I had my spinal fluid leak I would have regular lidocaine injections into the back of my head along the path of the nerves. It would be weird for a few hours when I had no feeling whatsoever in the back of my head / scalp but it would disrupt the pain signals for long enough that I would get up to 6 weeks with much reduced pain. Since 2016 I have had the odd flare up, where I have had the electric shocks and the painful scalp. The end of last week was off the charts pain wise.
The pain starts at the base of the skull, you can see on the diagram from the link where the occipital nerves start. That area is hot and painful to the touch, the pain then goes all the way up the back of my head. Sometimes it is sharp pain most of the time it is a deep burning throb that gets worse when anything touches my head like a brush, water from the shower, a pillow. The pain when it is bad is accompanied by my neck getting very stiff and crunchy.
I very rarely cry from pain. Pain is exhausting enough without adding in crying. Last Friday, Saturday and Sunday I cried from pain and I can’t remember the last time I did that. Friday and Saturday were spent in silent tears. I didn’t know what to do with myself. Pain had me retching, distraction techniques weren’t working, nor was my usual trick of a hot water bottle on the back of my head. The pain made me feel very, very depressed, it sucked the joy out of everything. If I could have paid someone to give me an occipital nerve block on Saturday I would have emptied my bank account to have it.
I was trying to work on some Christmas presents but I had to give up because I couldn’t see what I was doing due to the tears. To have pain that you know no matter what pain relief you take it wont go away is soul destroying. I couldn’t think, I wanted to be sick and I knew going to bed wouldn’t help because that would mean lying with my head on a pillow which was just too uncomfortable to do. Not sleeping exacerbated the pain and the feeling of helplessness. I can cope with a lot of the shit that is thrown my way but when I am not able to manage it, I get despondent pretty quickly. Because at the moment accessing healthcare is a nightmare. Everyone I know with a chronic illness is having to manage their own conditions for months at a time with no external input. So when the pain was at it’s worst on Friday and Saturday the thought of having to be in this amount of pain for possibly months at a time filled me with dread.
The good news is that it has dropped down a few levels, it is still very sore, I am still not sleeping due to it. I spent midnight until gone 4am wide awake last night. I only got some sleep because I ended up taking a diazepam ( well half of one) but I am running out of them ( they only allow me to have 21 every few months due to the fact they are so addictive). I have one tablet left which means I will have to pick my time wisely. Due to this fact I have invested (again) in a CBD oil vape in the hope that this will take the edge off the pain when it gets bad. At the moment I am willing to try anything at all to get this pain under control.
I have contacted my doctors surgery and asked the question if anyone at the practice can do occipital nerve block injections. I know one of the doctors that has just retired used to do a friend of mines injections on a regular basis. I am wondering if any of the remaining doctors or the new ones that have just joined the practice are able to do it. I need something as The lack of sleep and constant pain is taking its toll.
Another piece of good news is that my referral for the Spinal unit at the hospital has been accepted and I have an appointment next week. I don’t know if this is for a physio or an assessment. It is being held at the Orthopaedic unit, so I know there is a multidisciplinary team there with physiotherapists and surgeons all working together. This referral is for my neck as since the RTC in August I have had problems with my neck and my left arm has pins and needles / altered sensation. So maybe if I get no joy from my doctors practice I can get the occipital nerve block injections at the hospital. What I really don’t want is to be put on Gabapentin or pregablin again as both have never really done anything for me in the past and Gabapentin made me like a zombie.
So fingers crossed I can get some help resulting in some relief from this as at the moment I am struggling with this.
Update sadly my local doctors surgery doesn’t do these injections. I would cry if I had the energy.