Flashback: Explaining the broken brain thing

Originally posted on 6 October, 2012

I appreciate that it’s difficult for most of you to comprehend what’s going on with me because I just say ‘my brain’s broken’.

It’s a helluva lot easier to say my brain is broken than to explain what is going on. But as this condition long ago passed the point where I could either hide it or belittle the seriousness of it, particularly when I realised I couldn’t work, it’s really not going to hurt much if I tell those who wish to know what’s going on in a bit of detail. If you don’t, move along, nothing to see here.

Dot points for those with short attention spans:

• Infection in my brain in April caused some inflammation
• Since then really bad migraines that cause numbness in limbs, occasionally loss of speech or other issues
• Migraines usually about once a fortnight, last around 5 days (exception: all of August & September was a continuous migraine)
• Fatigue is also a big issue, sleep at least 12 hours a day
• Lowest point end of August, slowly getting better, but not returning to work soon
• All physiological: not mentally ill

On the 30th of April, not long after my return from Israel and after an extended period of generally not feeling great but not feeling particularly ill, I was taken by ambulance to St Vincents Hospital with severe pain and numbing to the left side of my chest and left arm, as well as feeling pretty nauseous.  It had come on pretty quickly that afternoon, starting as just some tingling around my elbow that had spread to the entire arm and chest and started to get painful in under 90 minutes.

I spent the next 10 days in the acute stroke ward of St Vincents being tested for everything known to man. Initially diagnosed as a possible aneurysm and a kind of unusual stroke, was ruled out after 2 days when the area of gliosis (scarring) in my brain was determined to be old damage, the same as was found in a 2005 MRI (and determined to be old then too – the cause and date of which remains unknown, it hasn’t really caused me any dramas but it freaks everyone out just a bit).

While I was in hospital it took 5 days for the symptoms on my left hand side to clear. I worked with physios and occupational therapists to get coordination and the like back as I had clumsiness in both my left hand and left foot. I was also having some minor memory issues and my vision wasn’t as good as it should have been. Later, my right foot went numb but it also resolved itself in about 5 days.

A lumbar puncture  found elevated white blood cells in my spinal fluid, leading to a diagnosis of an unknown infection of the central nervous system. The theory as it was explained to me was that this infection had caused inflammation in my brain, causing the sensory disturbances and pain I had experienced. It was a diagnosis that still had a lot of question marks and there were still a few test results to come back, but as they had ruled out everything more sinister, I was discharged from hospital to return to see the Neuro in his rooms in a few weeks.

The next week I had a repeat, but not quite as severe episode. And again a fortnight later. Each time it involved some part of my body going numb, pain, nausea… and it lasted for around 5 days. Fatigue, memory and other brain-not-working issues, balance issues and headaches started to join the list of symptoms.

So now what we are dealing with a chronic, complex migraines with aura. I’ve had migraines before – and fairly nasty ones too, when I lived in Canberra, but they really stopped  when I left Canberra. And they were nothing in comparison to this.

I have a significant problem with the diagnosis of migraines. For starters, you say that word and everyone goes ‘oh, you have a headache’. Um, no. The headache is the least of my worries. Yeah, I do get headaches, but I don’t go to emergency for a frigging headache. And 3 times now when I’ve been to emergency and said the word ‘migraine’ I’ve been met by a look of contempt from someone who is clearly annoyed that I’m in their ED, and seems to think I’m looking for a pain lolly. Sorry, side rant.

I have tried a couple of different medications without success. The frequency of the migraines was originally one every fortnight (so 5 bad days, 9 good days), but they increased in frequency until the one that started on the 31st of July which lasted for 2 months. While I kinda declared that over a couple of weeks ago when I had 3 glorious days (albeit not consecutively) without a headache, the reality is that my right foot is still numb and has never come good, my left arm has a permanent niggle in it as well, and I’m coming to accept that as my new baseline.

Since then we seem to be returning to the 14 day cycle.

There are still question marks in the diagnosis and the prognosis. We are in second opinion round at the moment, mostly that will be second opinions on treatment rather than diagnosis from the neurological perspective. As my general health has picked up a bit since I hit rock bottom late August it is hoped that I should be able to start returning to some normality in the new year, although what, and in what form, I really don’t know.

The biggest issue I find my friends and family don’t understand is why I can’t work. Well there’s a couple of reasons, let me break it down for you:

Fatigue: I’m sleeping at least 12, and anything up to 16 hours a day. It’s a rare day if I’m awake for longer than 4 hours straight. My GP is considering adding Chronic Fatigue Syndrome to my actual diagnosis, but wants to see what my visit to an immunologist later this month (at my urging, see if my food allergies are playing any part of this) turns up first. But that kind of sleep requirement is not conducive to work.

Unpredictability and inability to commit: I’m still really ill. I’m still too ill to manage meeting a friend for coffee more days than I’d like to admit. Yes, there are days that I’m feeling pretty good and I could work, but I can’t guarantee that I can tomorrow. Even with my current 14 day cycle, that would still involve on taking 2-5 days off sick every fortnight. Yes, I could work part-time, but I don’t know which days I’m going to be sick and unable to get out of bed, or which days I’m going to be fine in the morning but overcome by fatigue or headache or nausea 2 hours later.

Decision making and other function issues: all my doctors are stumped by this one, but I’m having enormous difficulty with simple decision making, however, paradoxically, my complex analysis ability is undiminished. I also have difficulty with concentration and can no longer handle multiple sources of input (eg. I can’t tweet and watch Q&A at the same time anymore). This isn’t a psychological problem, it’s a physiological one – I broke something, it will take time to heal. Exactly what can’t be determined until we get a long enough period without a migraine to allow neuropsychological testing.

So I can select a new computer and buy it with little drama as I did last week, but be completely unable to choose between two different brands of white bread. Or to give you another example, I can still give you my thoughts and analysis on the US Presidential election without skipping a beat, but often struggle with basic day-to-day tasks like choosing what to wear. (I do get dressed – complex systems are in place to resolve the day-to-day problems, mainly through using the creative function of my brain which is working fine. I plan menus and design wardrobes for the week instead of allowing for decision-fails.)

While it may seem from blog posts and commentary that my brain is still working – and most of it still is – some of the functions necessary to operate in a work environment aren’t. I did try to go back to work, both full-time at a work place and in a flexible arrangement from home, and I just couldn’t. The moment I knew I couldn’t work was when I’d been trying to send an email re a tight deadline press matter for an hour – I was going through the final check list of ‘is this email good to send to the Minister’s office?’ and I simply could not make that yes or no decision. I’m much better now than I was then, but I still have bad days when I just can’t get my brain to work.

Migraine aura symptoms and OH&S: My most common migraine symptom is numbness in limbs, and since early August I’ve had on a permanent basis some level of numbness in my right foot. The extent of that varies – sometimes it’s just annoying, sometimes it makes walking near impossible, but it always makes me less steady on my feet than would otherwise be the case. Either my right or left arm can go completely numb as well. I can also lose vision, and balance issues (whether or not my foot is numb) are not uncommon. All of which are an OH&S risk. The likelihood of me falling over, knocking things over, running in to things, or causing physical harm to myself or others is higher than it should be.

Does that mean I should never work again? No, but I’m not in the position of having been in a job where I can I ask for a return to work plan and they have to cop that risk, and a new employer would have to want me pretty bad (or not care about OH&S) to wear it. I look at it from the perspective of it’s better for me to get this sorted than potentially have another health issue to worry about as well, so if I am going back to work in the nearer term it will be stuff I can do from here or workplaces I am already familiar with.

Things to be grateful for:

• I do have good doctors. They are working pretty hard to figure this out, although there has been a bit of a lull in activity lately because they got a little frustrated and bored with it, I’ve been able to push things in a different direction (aka: insisting on the immunologist to see if there is an allergen trigger for the migraines) which has sparked them up a bit. I of course have to stay here in Sydney to have access to them which has an added cost, but so far I’ve been able to afford it.
• Universal healthcare is a marvelous thing.
• I’m not suffering from any kind of mental ill-health at all. I’ve been seeing a therapist regularly since this started as it was a concern (and is a possible side effect of some of the medication) but thus far at least it has been purely as a preventative measure.
• The support of those few friends and family that haven’t bailed on me yet with this latest nonsense.
• That this is the only real drama I’ve had to deal with this year, in comparison to last year’s cascade of trials and tribulations. Yeah it is a whopper, and I did have a few other hiccups around jobs and housing and the like – but all in all it is a massive improvement.
• The powerhouse of my brain, the bit that does all the political analysis and the bit I really like, is still in there and is working fine. No matter how much this illness wrecks my body, so long as it is working and I can type, I’ll be fine.

I really want my brain back. I am trying to be patient. (Ha! Get it, patient…)