Boxing Day. Can I feel my face? No not really, and I feel weird.

So it goes something like this…

“Mum, will you take me to A&E I think I’m dying. I read online it might be a stroke.” As you can now tell, my rational brain had left the building 24 hours after said extreme headache. It didn’t take long.

“Don’t be ridiculous, OK you can go but I’m not staying with you because it’s Boxing Day” *n.b. Mum is a nurse. Nurse Mum did not think it was anything bad at this stage, and said daughter is prone to some exaggeration at best of times*

Goes to A&E. Probably after a cup of tea. Sits next to man who starts telling me he gets recurring headaches and apparently nobody takes him seriously but he comes to A&E all the time to try and resolve the issue. This was his 20th visit this year or something equally as ridiculous. Why he would go on Boxing Day was beyond me.

Queues are through the roof but I get seen pretty quickly and I’m triaged. I have a couple of what I now know to be neurological exams, eye tests and things like that. Nothing seemed untoward in those.

Very shortly I am speaking to a consultant. The consultant asked me if I’d been drinking heavily, kind of insulted – do I look pissed? I say no and he still asks me again! I’m not lying, I’ve been stone cold sober with my stupid numb face for days.

Said consultant with abysmal bedside manner then proceeds to tell me matter-of-factly whilst alone in the room with him that he believes this could be a sign of a brain tumour, and when pushed further by a now extremely anxious patient, a brain aneurysm.

I don’t know about you, but I didn’t have a clue what a brain aneurysm actually was so I was fully freaking out about the brain tumour I now had, oblivious to the fact that about 50% of people actually die from a ruptured aneurysm pretty swiftly. I was being sent for an urgent brain CT scan so they could see if there were signs of bleeding, but because the headache was over 24 hours prior to my arrival at A&E, there was a potential it wouldn’t show up. But hey, it would rule out a brain tumour.

Phone call to horrified Mum ensues and Mother is at A&E within rapid speeds.

Nurse Mum knows what a brain aneurysm is and her face said it all. I googled it. Fucking Hell, I am 100% dying, R.I.P me, say bye to the dogs. In the moment, it actually seemed absurd and almost comical because I didn’t really feel unwell or like I’d had a bleed on my brain. We kept telling ourselves that surely I was too well to have something like that? But a consultant said it, why would he think it? Maybe it was the brain tumour after all and I’d have a few months of my life left to do some fun things, complete on my flat, or mainly just spend the whole time in a giant panic attack worrying that I’m dying 🙂 (With hindsight I know brain tumours are not always bad and I have some context.)

Anyways it was soon time for my trip to radiology, I’m going in! CT me up.

At this point I did have a bed in A&E, lucky me. When I returned I got the keep the bed for a few hours, but then in classic NHS cuts style I was sent to wait in a random meeting room to try and sleep on a chair while waiting to hear my results. As time passed, and all the staff refused to give me diazepam because it could give them duff neurological results if I was drugged up, the panic started to fade by itself and life with my broken brain seemed like the new normal. It’s funny how quickly you can get used to something. As the hours went by and I realised I wasn’t dead yet, the aneurysm situation didn’t seem to quite check out. The tumour will be operable and I’ll be fine!

Results are in, it’s morning, we’ve been there all night and I’m finally given a bed. I’m told my brain looked ok but I would need a lumber puncture because this could show any bleeding or abnormalities in more detail. Again, I had no idea what this was.

I was then told I’d have the LP within the day and someone would come to see me. I had quite a few bloods taken too.

Hours and hours slip away, and boyfriend was now in attendance.

After a distressing day with the addition of some food that resembled a floating omelette… a large group of doctors now surrounded me. A senior consultant at the hospital and his junior doctor gang attentively listening to his every word. He said the LP was not needed as I was already distressed enough, and the A&E consultant should never have told me what he did. He continued on, my GP’s initial theory regarding it being a virus was the most likely culprit for the numb face. The headache was a migraine. He said it will go away on it’s own, and that I could go home. WTF?

Not the type of all-nighter I was after at Christmas.

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Diagnosis Story Part 1 – Happy Christmas

It was the lead up to Christmas. A period of unlimited festivities, many late nights, lots of drinking, a few awkward secret Santa’s… you know the drill. Everyone across the country is feeling bloody knackered and counting down the days till their time off. Nobody feels particularly fresh and most of us feel run down.

There had been an event, it was a work night and I think there was an ABBA tribute band. I came into the office the next morning and was feeling a bit worse for wear… but I was there just doing my thing.

I’d probably just eaten breakfast, yet still counting down the time until it was acceptable to get lunch (11.59am FYI). At some point in time my lips started to feel really tingly, I’d been using some new lip balm so had assumed it was this. Maybe an allergy or irritation? Weird but not that bad. I stopped using the lip balm. Carried on my life as normal.

Days passed and the lips were still feeling weird, and it was just one side. The right hand side. It felt like it was actually getting worse and spreading into my face. I thought maybe I’m just going mad?

Slightly prone to becoming neurotic at the best of times I think I gave it a week before I called my trusty GP (this is me being restrained and not wanting to waste anyone’s time). By this point one side of my face felt like I’d had an injection at the dentist that was wearing off. The GP said it was probably a virus and it would likely get better on it’s own but if it got worse come back to see her. My Google history was starting to look a bit extensive, but everywhere mainly pointed towards Bell’s Palsy – though my face wasn’t droopy so I was confused. What kind of strange unexplained numb face virus is this? I wasn’t panicking though because I knew I was run down and very tired. Nothing that bad really came up on my searches and rationally I knew I hadn’t had a stroke.

That appointment had been at the end of the week, school was soon officially out and everyone had gone home for Christmas. I left London and visited my family for the holidays.

My parents don’t drink alcohol so usually going home is a good detox. I don’t tend to drink and get lots of sleep.

It was Christmas Eve, just a normal night in with a bit of extra chocolate when you’re in your late twenties with no kids.

3am or 4am.

Not when I was planning to get up… suddenly I awoke with the worst headache of my entire life. I immediately vomited. It was extremely painful and I thought there was something seriously wrong and I was going to die. Maybe a bit dramatic but it was really bad. I shouted my mum, she took me downstairs but the light and the sounds from the TV were too much. I couldn’t deal with any of it. I had some painkillers and eventually the headache eased off after a few hours. In the back of my mind at that point I was really worried I’d had a stroke or something awful, but again, I tried to push the thoughts away. Surely I’d be in a worse state if it was something like that? It must be a migraine, people say they are terrible and I’d never had one before.

I went back to bed eventually, however when I woke up for Christmas Day, the right hand side of my face was now… really numb. It felt worse. Like the injection at the dentist but as though it had just been administered.

Not wanting to go to A&E on Christmas Day and not able to ring my London GP, Christmas Day just happened, I felt strange but I hoped I would feel better tomorrow…

Diagnosis Story Part 4 – Over the edge

You’re not getting an illustration this time. It’s time for an angry 90’s Hole cover of The Wipers.

It sums up my experience of early 2019.

Those months are up there in the scales of bad. They get a top spot in the Leagues of Shit.

This is the tale of when my eyes pushed me over the edge.

Eye strain.

I probably need new glasses? Not that unusual. Better get myself to chain-of-opticians-that-shall-not-be-named because I now hate them. Not so simple.

£500+, 8 eye tests at 4 different opticians, 3 new pairs of glasses/lenses and my eyes still hurt. It’s not the lenses is it? What is wrong with me? One rather facetious optician said it might be neurological (he wasn’t wrong though).

Meanwhile, I couldn’t look at light without pain and I’m certain all the optometrists thought I was a hysterical women who they’d never help. It was relentless torment, an eye ache that wore me down. Both do wonders for one’s mental health.

3 months and a stress induced breakdown later, my GP tells me to visit the A&E eye hospital.

All faith in the eye care profession had been lost at this point, but I see an amazing and kind doctor, the first one to even notice what’s wrong. “You have severe blepharitis/meibomian gland dysfunction and dry eyes.” Steroids & anti-biotics promptly prescribed and 3 weeks off work not using a computer. Gets a bit better. But still aching. All. The. Time.

Dry eyes doesn’t sound particularly serious. However, people have committed suicide over the persistent pain that can entail.

You may be thinking, is that even related to MS?

Eye problems in MS tend to be optic neuritis – vision loss and pain, nystagmus – uncontrollable eye movement & double vision. Those are not ocular surface/external eye conditions like blepharitis and dry eye, they are caused from the insides.

I’m still waiting for a follow up appointment at the eye hospital so the specialist can, in his words, ‘join the dots’.

When I told him I had brain lesions at my last meeting pre-MS diagnosis, he went a bit pale. He also couldn’t complete the dry eye test as my eyes were so dry they wouldn’t keep the paper in. That was nice.

There is no doubt in my mind it’s related. This preceded the start of my second relapse.

“The relationship between MS and ocular surface disease is very interesting. In MS patients, associated ocular surface disease may be triggered by the underlying condition itself or may occur secondary to neural interruption.

MS causes the myelin sheath around some of the most important neurologic components to become inflamed. Myelin is a critical component in the conduction of electrical impulses for proper nerve function. When inhibited, sensory impulses are not conducted properly and can result in poor motor control. Also, the motor response itself can be interrupted by poor signaling/conduction to the end target.

For eye care providers, it is important to know that MS patients can develop severe ocular surface disease from insufficient tear production (which is a motor response to a dry eye stimulus), failure to recognize dryness (corneal sensory issues), lagophthalmos (the lid failing to
close properly due to muscle limitatioms) and an increased risk for uveitis.” – Review Of Optometry – The Impact Of Autoimmune Disease – p.68.

I hope the dots are connected.
I’m not mad after all?