epilepsy

It’s been four weeks since I last wrote about my recovery, following my seizure in May. Because August is my busiest month at work, most of this month’s blog posts were written in advance and so I haven’t talked about what has happened with my health since last month. Things have happened and so it’s about time for an update.

I had a third seizure

Earlier this month, I had seizure number three. Number one, as mentioned, was in May and resulted in me breaking both my arms; seizure number two was in June. I managed not to have a seizure in July, but then had a minor one earlier this month. Like the second time, I was already in bed, so I didn’t fall and my head was supported. And again, like last time, Christine was there and was able to time it. As per Epilepsy Action’s advice, it’s not really necessary to call for an ambulance for seizures lasting less than five minutes, and once I’d come round, we all went to bed. I even went off to work as normal the following morning, with only a sore tongue from when I’d bitten it to show for it.

I’ve been fine since, although my neurologist advised my GP to increase the dose of my anti-seizure medication, Levetiracetam (more commonly known by its brand name, Keppra). I’m still on a relatively low dose for now though. It also, unfortunately, resets the 12 month seizure free period that I need to have to get my driving licence back. So, I won’t be able to do any of the driving for next summer’s holiday either.

I have a formal epilepsy diagnosis

Speaking of my neurologist, I had a call with them at the end of last month, where they stated that I met the requirements for a formal diagnosis of epilepsy. This, incidentally, was before seizure number three.

We’re still trying to work out what is actually causing the seizures, as there doesn’t seem to be a specific trigger. I’ve had two electroencephalograms (commonly known as an EEG or ‘brain wave scan’):

• a standard EEG test last month, which came back normal and included a strobe light test
• a ‘sleep deprived’ EEG test last week, where I stayed up all night, and then had the test first thing in the morning. That meant that I fell asleep during the test, and so they could monitor my brain activity whilst asleep. I then spent the rest of the day in bed. I’m still waiting for the rest of this.

Meanwhile, my ENT surgeon is looking at booking me in for an ear procedure that may help, whilst I await the results of another CT scan.

I also have an osteopenia diagnosis

On top of all of this, last week my DEXA scan results came back, showing that I have low bone density for someone of my age. This would likely explain why I ended up fracturing both arms during my first seizure. The medical term for having low bone density is osteopenia, and people with osteopenia are at greater risk of developing osteoporosis if it’s not managed well. I’ve probably developed it partly as a side-effect from having been on steroid-based asthma medication for over 30 years, but being able to breathe is important to me so I’ll take the compromise.

The good news is that osteopenia doesn’t need to be managed with medication – regular vitamin D and calcium supplements are usually sufficient, as is regular exercise and avoiding smoking and excessive alcohol consumption.

I still have some further blood tests to do, just to make sure that there’s nothing else causing my osteopenia that needs flagging up.

My mobility is getting there

I’m starting to regain strength in my arms, and my dexterity and mobility is improved. There’s some way to go before things are back to normal – I still struggle with getting things over my head, and putting a backpack on and off is a bit of a challenge, especially when wearing a coat. But I can do almost everything on my own now, with Christine just helping a little bit with showering and sorting out my shirt collars, for example.

I’m also in significantly less pain – whilst I’m still taking paracetamol and/or ibuprofen most days, it’s more as a response to acute pain flare-ups, rather than keeping chronic pain at bay.

I’m back at work full-time

I’ve been back at work full-time this month, and worked the extra hours for Clearing as per usual. Whilst I have been a little more tired on an evening than I would have expected to have been before May, I feel I’m coping well.

So I’m getting there. There’s still more tests and procedures to come, but I reckon I’ll be closer to my pre-May normal by the end of the year. I’m already not far off.