Life with a leaky spine isn’t exactly the story I thought I’d be putting down on paper, but here we are anyway. Welcome back to my corner of the internet where I can confirm it is absolutely not just a headache, honey! If anyone says otherwise, I may gently place a textbook on their head and ask how that feels.
Hey! Hey!
It’s took a while to become functional enough again to write this long overdue post, but we are back! For anyone who hasn’t read (or can’t remember) my last life update then I’ll link it here! However, in the shortest possible way, I’d practically self-diagnosed …
Travelling down to London …
Having suffering from complete exhaustion following my previous appointment in London, we decided to travel down later in the day; giving a hard pass on any exciting London excursions. By this, I mean exciting for me, my dad could think of infinite things he’d rather do than set foot in London! Therefore, the train should have departed our local train station around 15:45 and should arrive at Euston at somewhere close to 17:15. This then gave us an hour and 15 minutes to get from Euston to the Royal Free hospital for my 18:30 appointment.
Plenty of time … were those famous last words!
As per every attempt at utilising public transport, the train arrived late. Getting twitchy that I’d only allowed just over an hour to play with, my dad was beyond relived to see a train pull up just 7 minutes late. Safely on the train and having secured forwards facing seats (I get horrifically travel sick if I’m not facing the direction the train is moving), I took the opportunity to remind him that it was only 20 minutes to the hospital from the train station so we had plenty of time. We could also take comfort in the fact we were seeing a neurologist and its an integral part of achieving consultant status to be late …
We never did make up those 7 minutes like the train driver promised, and ended up arriving in Euston somewhere around 17:30. This however was fine because in my head we still had an entire hour before my appointment. One thing I hadn’t factored in for was the absolute Olympic level challenge of getting out of Euston station during peak rush hour pedestrian traffic! It felt like some sort of Takeshi’s castle challenge trying to navigate the hundreds of people sprinting for their trains!
Non-Londoners down in London …
Safely out of Euston station, we made our way to the bus stop. Completely calm about the fact we still had 50ish minutes to play with as a minimum, I stood there the most nonchalant I have ever been; my dad on the other hand was anything but nonchalant.
Eventually, a bus arrived a few minutes before 6pm and to be fair even I couldn’t deny we were probably getting a bit close to the wire as traffic in London is hellish at the best of times, let alone 6pm on a work day evening. Nonetheless, I was confident that my neurologist would in fact not be on time because well no neurologist ever is, so continued to uphold the belief we would be fine.
Not to brag or anything, but we made it to the private wing with a whole 5 minutes to spare. Then, as if I wasn’t enjoying enough highlighting that I had been right, my neurologist was roughly 10 minutes late. Therefore, we were in effect 15 minutes early …
The consultation itself …
The first thing she noticed was how I was ever so marginally less thin than when she’d last seen me. I couldn’t hide the smile because she was right. I’d managed to put on almost 5kg, and whilst still very thin, I also looked the healthiest physically she’d seen.
She asked how I’d managed it and whether the anti-sickness meds she had previously prescribed me were effective. At this point my mind thought screw it, it’s now or never. Might as well start off sounding insane and pitch her the theory I’d come up with based on the research emerging from the US …
Unlocking a side quest …
Pre-warning her I was probably going to sound crazy, I explained that a friend had sent me a research paper from the US. This paper had discovered a potential link between low pressure headaches and a condition called Mast Cell Activation Syndrome (MCAS). I won’t repeat everything from the post linked above, but in short I confessed that I’d started taking a daily antihistamine (fexafenodine). Since taking it, the cycle of crippling nausea I’d been trapped in for 18 months seemed to be breaking.
Confessions over, I looked at her with anticipation. However, she simply met with a smile and “that’s brilliant, we absolutely need you to stay on that long term. We’ll get it on repeat.” My internal monologue was in overdrive … this wasn’t the response I was expecting. Actually, I’m doing her a disservice there because she always listened attentively, but even I knew I sounded slightly insane.
We continued to discuss the other symptoms of MCAS that in hindsight I’d been displaying since my early teens. The downfall being it’s a particularly difficult condition to diagnose. Furthermore isn’t particularly well recognised or acknowledged in the UK (typical!).
Back to the headache in question …
Pushing my newfound knowledge in this niche area to one side, we reverted back to discussing the main reason we were there: the headache. In terms of its clinical presentation, it hadn’t changed in the slightest. Still felt like my brain was falling out of my skull, the pain was predominantly at the back of my head, and it disappears within 15 minutes of lying down. All the co-exisitng symptoms of nausea, tinnitus, numbness, brain fog and spinal pain also remained present and correct.
Being the boss lady that she is, she’d managed to get her colleagues at UCLH to agree to review my case from a surgical point of view (something nobody else had managed), so in terms of that side of things it was a case of wait for an appointment to come through. The plus side to playing the waiting game for this team was it will given me further thinking time.
Internal turmoil …
It’s been almost 2 years since I first presented with symptoms of a CSF leak, and this time has been further saturated with trauma at no extra cost. If she’d have asked me 12 months ago, I wouldn’t have hesitated to subject my body to whatever invasive diagnostic methods to try and pinpoint exactly where in my spine the problem is originating from. However, not only are we more than 12 months down the line, we are also more educated on the condition. Especially the reality that my body could undergo such procedures and still come out of the other side with absolutely no idea where the problem is originating from.
It’s an impossible decision to try and make. My heart says if you don’t try it you’ll never know. The problem is my brain is hyperaware of how physically and emotionally traumatic the procedures I would be undergoing are. Disclaimer: that statement is based entirely on my own personal experiences previously with similar procedures.
I still don’t know what to do for the best. However, when I do make my mind up, I’ll be sure to share my decision and the reasons behind it!
Making the most of my £200 appointment …
Having established a string of frankly unconventional medications to trial, we flitted back to the possibility of MCAS and it’s potential impact on whatever is going on. However, nothing prepared me for being sat with a highly qualified consultant and have her ask me what I’ve learned …
Again, it’s not very often I’m stunned to silence, but this was one of those moments! I wish I’d known this scenario was possible because at home sat a full notebook with all my research. Each discovery cross referenced to various stages of my life! I’m telling you, one day, Grey’s Anatomy will buy that notebook. There’s enough in there to keep the show going until Ellen Pompeo can physically no longer work.
You couldn’t make this up …
Sadly, the impending brain fog was about to strike hard. So, any memory of my PhD worthy notebook was fading rapidly. I recalled bits about cell stabilisers, but nothing specific. One thing I did remember was the mention of a medication I’d been on since my teenage years: montelukast. The thing was I’d always commented on how effective it was for hay fever symptoms rather than my asthma. Coincidence? Knowing what I know now, I think not.
She concluded the conversation with the following sentence: leave this with me and I will find out more.
Let me just say that one more time … leave this with me and I will find out more!
All consultants should take down notes …
The level of refreshing felt leaving an appointment where you’ve been heard and not silenced is indescribable. All consultants should take a leaf out of this book. they may have the superior medical knowledge on paper, but they couldn’t in their wildest dreams fathom what it’s like to live with such symptoms on a daily basis.
The trip home was disastrous. The buses were delayed, we missed our scheduled train, and ended up being diverted massively thanks to train track fixtures.
It could only happen to me!
X O X O,
Your favourite headache!
Next time ~ An unbelievably disastrous A&E debacle
Gonna go down in flame ~ Blank Space, Taylor Swift, 1989
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