I am a Unicorn! A migraneous Unicorn!

No, I haven’t completely lost it, yet! A doctor in training and also friend of mine described the process of diagnosis to me like this… If you hear hooves, 95% of the time it will be a Horse, 4% of the time it will be a Zebra, 1% of the time it will be a Unicorn. I am on Day 19 in hospital and that paired with the perplexed faces of the fifth neurology consultant assures me, I am a certified Unicorn. Being special, unique, a Unicorn, in many situation would be a cause of elation. However, on a neurology ward or I imagine during a smear test…not so much!

The weekend was a success, nothing awful happened and I even made it off the premises! This was a great reminder of what it is I am aiming to win back with all this pain and misery. It’s not all misery, I am really warming to the lemon sponge and non descript potato based ‘pies’, the first AND second time I eat them! I am feeing particular crass this morning, sorry about that. The upshot of this incident free weekend is that I am tolerating the new drug, flunarazine. Which is just great news as it appears to be my only hope at present. Although the pain has gone, not much progress has been made. The sickness remains as does the headache and visual disturbances, aching liver and the feeling ‘drunk’ has most certainly returned.

The week begins and this marks the return of my consultant, the original Dr K. With Plan C not being all we hoped and dreamed, Dr D ‘Maverick’ is quick to relinquish me from his care, with a shrug of the shoulders and a disheartening ‘I’m sorry, I really thought it would work’, we are off again. This is bit where I give up my stripes and earn me a horn! Dr K after months of his best efforts admits defeat. I have perplexed all three top neuro bods, they have decided I need a special specialist! The level of ‘special’ I require is a pretty elite club it turns out, there are only a few internationally. Not what I wanted to hear, but alas the search begins! No news on this yet so feel free to chip in at any point fellow migraineurs!

In the meantime, where does this leave me? Well as Dr K kindly pointed out we can’t really let you loose in a worse state than you came in. Agreed Dr K, agreed! So time to ‘get me stable’. This week I marked the seven months of migraine with learning to inject myself, a rare and unwelcome treat for my sins. So I am now onto trialling the Sumatriptan Subject, a 6mg shot to try and stem any severe attacks if they hit me. What this baby does is once you’ve been brave/foolish enough to push the button that fires a needle into your thigh is makes your blood vessels constrict, stopping the migraine, thats the aim of the game if you’d lost track at any point. I’d been warned about the tightness in the chest you may experience and the burning you may feel in your head! But these are just cool, calm words. HOLY MOLY (yes that is what I said, honest) I cannot explain the shock and fear when this actually happens, I thought it was over, the big lights out! After all this can you believe, you know whats coming don’t you, I’ve still got a headache!!

As usual, lets not dwell, there is something potentially worse on the horizon…The bit I have been dreading has arrived and I knew it would, time to ‘clear the drugs chart’. I take a lot of drugs, beta blockers, anti inflammatories for the brain, vestibular suppressants, anti emetics, gastro resistants, Riboflavin and all the new stuff they are trying on top. As of yesterday the process of weening me off these has started. When the consultant says ‘we need to be brave’! I believe what’s happened here is he has confused, being brave and being bold. He really needed two parts to that sentence, ‘I am going to be bold and you need to be brave’. At the moment we have halved the beta blockers and the Pizotofen and started new anti emetic via IV… Lets see what this weekend brings!

So, the time has come to dip into my cliche repertoire, pick what you will to mark the fourth week in hospital –

What doesn’t kill you make you stronger
These things are sent to try us
Everything will be alright in the end

I am going to go for something in the management consultatancy sphere, keep my work brain a float… We are where we are!

A week on the ward!

The time has come for the much anticipated hospital admission. After many a false start and many a wasted bag pack, which I heavily resent, I was off! Of the many hurdles I knew I would face and will continue to face, ‘being me’ wasn’t one I had prepared for. Presenting myself as an under 90 year old Peggy requiring neurological investigation was like trying to talk my way into a high security prison. It was a bizarre exchange including being told ‘no, Peggy isn’t here yet’ and even being told I wasn’t Peggy. The we went through the motions of them attempting the admission on my Aunt as my replacement. But, alas amongst the comments of ‘but you’re so young’ and ‘you look well?!’ I managed to become a member of the Ward.

So, here I am with my future laying heaving on the shoulders of the many consultant I will undoubtably be put before. I have taken this seriously, this happens very rarely but it has, I’ve even made notes! After a slow start, Monday came and went without any real event, something I now wish I had been a little more thankful of! Tuesday was much the same but I now I had been given a plan, which really wasn’t much of a plan at all. I was confused and frustrated, why am I here? I knew the nurses thought I was a fraud, as did my ward buddies. What their mouths don’t say their eyes do for them..Lady Muck over there, swanning around, clearly fine, that’s what they are thinking. Damn you invisible illness, might maim my own arm, see if I can’t evoke some acceptance and validation from my comrades.

Wednesday arrives and it’s a big day. For anyone in a medical predicament you’ll understand the anticipation, excitement and anxiousness that comes with awaiting ‘The Consultant’. These high and mighty lords of the ward hold the key to your health and happiness! This is a new one, a fresh set of eyes and he comes with all this and more, a plan and actual real life dictionary definition, plan. I am as happy as you can be about receiving the news that I will be having the dreaded lumbar puncture. But aside from this the plan is two fold, I knew this would never be simple.

Part one – continue with hypothesis one, that this is in fact a horrendous six month fluctuating migraine and try and treat this. Hooray, not only has this guy got a plan he think he might have the answer. This is a rare course of action but in his reassuring words, this is a rare and extreme case. I am not sure why but his validation that this was indeed a disabling and life altering incident made me finally feel so sure I hadn’t just been lacking a big ol’ dose of manning the hell up! This will include being on a high dose of anti epileptics on intravenous for 24 hours a day for 4 days whilst stripping away the cocktail of the 30+ pills I am currently downing!

Part 2 – ‘check we haven’t got any nasties’. After a few months of this joyous journey I started to worry that something more sinister was afoot. Google told me I certainly had a brain tumour, stoke, brain haemorrage if infact I wasn’t dead already! But then you enter the world of deciding whether you have this syndrome or that disease. Unfortunately now me and Google aren’t the only ones in on this. So now the tests begin, lumbar puncture is first up, this is certainly worthy of it’s own paragraph if not it’s own blog, I’ll get to that. Ultra sounds of my liver, gall bladder, kidneys, and spleen. Reassessment of my numerous MRI’s and CT’s. And on a Friday afternoon thrown in a Gastroscopy just for good measure. This with an aside of ensuring I look like a hard core addict with no less that 3 blood tests a day.

This is all sounds great, right? Where’s the catch? Da daaaa, here I am, the plan ruiner as she lives and breathes. As to be expected my liver has been put under some strain in the last 6 months. As I explained to one of my now many consultants, I have been putting it through it’s paces for years. I even took a degree with an honours in binge drinking but it made it’s way though all that fine and now it’s been knackered, by the doctors!! Rest assured it is them to blame I have the blood tests to prove it! Okay so I joke, but my livers a little under the weather meaning we have to ween me off the cocktail concoction on drugs and then start the new ones. This all sounds great and logical, but I need those drugs. So with the withdrawal the world is becoming a less pleasant place to be once again. Imagine in ‘Inception’ when the world becomes unstable, well that’s me. But I’m here assured by the hope that this is the storm before the calm…

So here we are, Sunday evening and I am staring down the barrel of another week on the ward. At least now I am being sick 3/4 times a day and my balance is being rapidly stripped from me I’ve a chance to win over the new cohort in Bay D!