Flashback: Battle of the illnesses – #BrokenBrain update

Originally posted 11 October, 2014

So this is a bit of a broken brain update, which I haven’t done for a while, I know. I’m in an odd place.

If you’re unfamiliar with the back story you can go back and read the beginning here, or the tl;dr version is I had some kind of ?brain infection or CNS inflammatory disorder at the end of April 2012 that triggered a death spiral of hemiplegic migraines and I’ve been sick ever since.

Firstly, I’ll say that I’m a bit hesitant to say things about my brain and my function these days because I’ve been battling with my insurance company for a total permanent disability payout for over a year now. They’ve conceded the condition but keep saying I haven’t exhausted all treatment options – the main one being the occipital nerve stimulation I refused, which is no longer recommended for migraine treatment because, well, it doesn’t work for most people, has a 70% complication rate and makes other treatments like botox impossible. That’s the only treatment option I’ve refused, and they keep saying I haven’t either finished or provided documentation on others, except I have, they’re just being annoying. Any reason to deny the claim, right?

Secondly I’m in an odd place because after coming out of the very bad phase triggered by the insanely bad reaction I had to the botox treatment – which took about 5-6 months from when the botox was administered last October – my migraines have change MO quite a bit. They’re harder to predict now, thus harder to manage – no longer the 5 day cycle, I can have a migraine for a few hours, or a few weeks long. I have days – and even weeks – without headache now, which is awesome, but probably overall the same number of completely debilitated days that I did in say mid to late 2013, with higher pain levels. I have less paralysis (numbness and clumsiness is still a regular event – my migraines *always* have sensory auras, even the ones without headache) but impairment of visual field happens frequently now; similarly my speech and reading is less disturbed than it was but my sense of smell has gone haywire.

So basically I have higher highs, lower lows, and less capacity to predict and manage. Eh.

My adherence to the RPA elimination diet made a substantial improvement to my well-being in eliminating triggers and dramatically improving fatigue management, but it got to the point where I wasn’t eating properly. So we introduced vitamins, and I reacted to the vitamins. So winding that back and trying some other strategies, trial and error of what I can tolerate from both the vitamin world and the lower end of the allergens. You’d think I’d lose some weight, but noooo.

I need to go back to study. I know that studying – having something to do, something to get out of bed for each day – makes a significant difference to my general well-being. 2015 has been an entirely wasted year (ok, I did start studying law in the beginning but who was I kidding). I did start the process of applying for medicine in that angelic month+ long headache (albeit not entirely symptom) free period just after Easter when I was obviously deluded about my recovery, and I’ll see that through, but realistically I won’t get in – which is fine, because I’m not well enough to study full time medicine anyway.

Choosing what to study (if not medicine – I was planning to go to med school prior to getting sick) is however agonising. Not politics. My politics days are forever over.

My plans for next year also have to be weathered by the reality that, at the moment, my brain may not be the sickest part of me, and I may be about to take another dip on this rollercoaster. My migraines and associated issues have loomed so large for so long it is often difficult to remember there is a whole body there that could be sick with entirely unrelated things. I have enormous difficulty getting emergency to look past the word ‘migraine’ that much is certain. Even my GP, trooper that she has been, gets awfully fixated by the big fat elephant in the room, and it can be really difficult to remind her that what I am there for on that day has nothing to do with my brain – because 45 minutes later we’re still talking about my brain.

Classic example of this is how I came to be facing my current surgery (just an exploratory laparoscopy, nothing exciting). I was due for a pap smear last October. My gyne history isn’t great and I take regular check ups in this area fairly seriously – particularly given I’ve had ? right side pelvic paid since 2011 which everyone keeps telling me will go away, but doesn’t. I saw my GP fortnightly pretty much all of 2014 and, well, up until about June 2015. Despite booking an appointment specifically for the pap smear in October, because of broken brain conversations it took until December for it to be done. And despite a conversation at the time about possible need for a referral to a gyne, it took until July this year for that referral to actually happen.

Aside from that I’ve been having recurring chest pain, occasionally with shortness of breath, since April. Not good right? Again, I keep being told it’s nothing. Or more correctly I keep getting told it’s probably a migraine, or muscular-skeletal. Ok. Sure. I’ll go along with that. I don’t think it is my heart either – I know my heart’s been scanned and tested endlessly. But when they did the chest CT and said there was something up with the left side of my lung and the emergency specialists said I needed a thoracic specialist follow up, I’m happy to do that… I don’t understand why I’m then having a conversation with my GP about my brain in which she’s saying I don’t need to worry about my lung.

That’s a bit ranty. Sorry.

It’s a bit of a battle at the moment. It’s a battle not to give in to the anxiety of having something else break; the fear of yet another serious illness. It’s a battle of trying to get better. It’s a battle of understanding that when you are this sick and this close to the health profession you do get over-diagnosed and over-treated. It’s equally a battle to get doctors to look past your main condition if that’s not what’s bothering you, because if you don’t, it will never be treated. You have to trust *your* judgement of when to push and when to push back.

Despite the fact that I’m actually not managing as well with my broken brain at the moment as I have in the past, right now it just isn’t the centre of my life. Not that I ever really want it to be… you know what I mean… it’s not dominating. I’m spending more time with gyne’s than neuro’s. I spend a lot of time thinking and researching about what to do next year. I have a lot of good days, which I grab with both hands, and I’m pushing the bad days further – at least in terms of fatigue and pain management.

And yes, I still lose a lot of days to the darkness of the broken brain.