The Slow Movement of Pandemic Care
Having a rare condition can make it hard to get information as it is, but during the Covid-19 pandemic it has stepped up a notch or two. Usually, I contact my consultant via email to arrange the care and appointments for my superficial siderosis, but with everything on hold at the moment it makes it that much harder. Prior to the Covid-19 pandemic, it would take a few weeks before I’d hear anything about my next appointment, test, or admission, but with the shuffling around of hospitals to cater for social distancing and hygiene regulations, things are now a lot worse.
My neurosurgeon referred me to his colleague at another NHS health board to see if he could give any further insight into the issues I was having with the pressure in my head. Thankfully, I’m now at some sort of stability with this, which is one thing less to worry about. Upon my visit to the hospital to see the expert, I mentioned the zapping/shock-like sensation I am getting at the back of my head. It’s a strange kind of pain, it can be quite disabling when it’s onset, and I have to stop what I’m doing and just lie down.
I explained to the neurosurgeon that the sensation appears to trigger when I move my eyes or my head. I’m not sure what sets it off, but it is very intermittent and can occur as one long episode or a short spell of zaps. Thankfully the surgeon had a suggestion, which was to try some occipital nerve blocker injections, he advised he would write to my regular neurosurgeon to suggest he administer these for me. He told me they may work, or they may not work, but it’s worth a try if they help the pain.
What Triggers the Pain and Zaps?
Some of the things that potentially trigger the zaps and pain at the back of my head are tiredness and fatigue. However, I can’t be sure of this at all. I’ve woken up in the middle of the night with zapping at the back of my head on a few occasions, and it tends to be after a dream. I also thought that maybe stress is a trigger, but again, I don’t always get them when I’m stressed.
Getting An Appointment
Now I’d had my appointment regarding the zapping sensation at the back of my head, I was hoping I would be contacted soon so that I could get the injections and potentially help the pain. It had already been a long year in 2020, waiting to see the expert at the other hospital, but I thought now that things had moved back to the regular hospital it might pick up pace.
I received a letter from the expert neurosurgeon, which was addressed to my regular consultant, but for a few weeks I heard absolutely nothing at all. I emailed my surgeon’s secretary, but she was on annual leave. I received a second letter a few weeks later which was a copy of the first letter I had received, advising my neurosurgeon to administer some occipital nerve blocker injections to see if they helped my pain.
It took three months until I got an appointment, with the pain not going away whatsoever. Some days would be much worse than others. My surgeon emailed me to say he had to book a room at another hospital because of Covid-19 restrictions. I know from another patient I am friendly with, that the usual outpatient clinic is now being used as a nurse run day unit for certain neurology procedures.
Having the Injections Administered
I eventually met my surgeon at the spinal rehabilitation hospital in Cardiff. It’s quite a rundown old place, and I know they were planning to knock it down, but the pandemic put that on hold as well. My mum and I went into a room with my surgeon where he had all the injections laid out ready for me. I wasn’t actually expecting to have them then and there, I was just expecting to meet him to discuss them. It was quite a surprise, but a good one if that, as I just wanted to take another step forward in managing my condition.
My surgeon lowered his mask for me as I could not understand him due to my profound deafness. He explained he would give me 3 injections on each side at the back of my neck/head and couldn’t be certain they would help at all but said the risk is minimal and it’s worth a try. I put my speech to text app on my phone which my neurosurgeon hadn’t seen before. He was quite impressed with it, and whilst he was administering the injections in my neck, he was saying big medical terminology to see if the app picked it up. Either way, it took my mind off the injections and was quite funny too. The areas where I had the injections were quite sore, but it wasn’t going to be a lasting pain, so I didn’t mind. My surgeon told me to email him in a week or so to let him know how I’m getting on
Did They Work?
After arriving home from the hospital, I immediately had an episode of zaps at the back of my head as I was getting out of the car to go into the house. I said to myself ‘maybe I need to give them time to work?’. This episode was bad, I’d say it was about 7/10, but I just carried on through it.
Over the next 2 weeks I continued my usual routine of fitness and trying to improve my mobility. Prior to having the injections, I was getting quite frustrated not being able to do my neuro-rehab home exercises because of the pain. Over the next few days, I had a few episodes of zapping, but they were much milder than what I had before, and I was able to continue exercising. I logged all this in a draft email ready to send to my surgeon after two weeks-time.
My overall view is that the injections might have eased the pain and zapping, but they certainly haven’t stopped it completely.
Getting Back to My Neurosurgeon
I emailed my surgeon to tell him how I feel and that I can’t be sure if the injections are working because the pain is so intermittent and random. He replied to me straight away, and suggested I meet up with him again in a few weeks so he can top the injections up. He told me he will ask his secretary to send me an appointment in the post. I don’t mind trying this again, as they might have dampened the symptoms a bit, and that in itself is a win really.
I might ask my consultant neurologist if I can try either gabapentin or pregabalin (Licra) again. I tried a few neuropathic painkillers before I even started getting the zaps, I found they didn’t really help with any of my other symptoms, but I am yet to try them for this zapping sensation which started later on.
The other thing I’m considering is getting an opinion from an ophthalmologist (eye specialist), this is because when I have an episode of zapping, moving my eyes makes it worse. I’m already under ophthalmology for my nystagmus and double vision, so it may be worth asking