Migraine Week

So, on Sunday afternoon, I managed to seriously burn my mouth whilst eating (Having taken 10mg of diazepam and 20 of morphine to stop a very painful hip dislocation getting any worse, which basically meant that I couldn’t feel the inside of my mouth. Not even when I put a whole roast potato at 200 degrees into it, and bit, and chewed, and swallowed.)

By very late on Sunday evening, the whole roof of my mouth, the back of my throat, and all of my gums were one big blister, bad enough that all of the teeth in the hard palate were loose.

On Monday morning, I woke up with my jaw dislocated, which slowly got worse and worse, and I was reduced to eating nothing but oat milk.

On Tuesday morning, it was the same – Sore teeth, tempromandibular joint in pieces, unable to eat, and, worst of all, starting to get a migraine.

At about 19.45, I took a zomig and got in the shower to try to clear my head. By 20.00, I’d fallen out of the shower into a completely dark room, had tied a cashmere shawl over my eyes with a full bag of frozen coriander jammed into the worst of the eye-sockets and was screaming. I couldn’t lift my head off the pillow, or turn my neck, or move my jaw at all. I later described the sensation as “Like having a metal spike stuck in through the brow bone just above the left eye, exiting through the roof of the mouth, then lodging into the TMJ. Whilst fellating a lit blowtorch.”

And it stayed like that for several hours. Getting worse.

I called up Dearest, who switched on the low, green “migraine safe” lights (still too bright, through the edges of the blindfold), checked that I wasn’t actually having a stroke, and phoned 111.

111 were, predictably, useless.
– The nurse was angry that he couldn’t tell whether I “couldn’t” look at bright lights or “just didn’t want to”. The answer of “It hurts so much that they can’t” wasn’t good enough.
– The nurse was angry that he, and then I, couldn’t state whether I was “in pain” or “feeling very unwell” since the answer was both.
– The nurse was *incredibly* angry that we were certain that this was a very bad migraine, rather than meningitis (Occam’s razor does suggest that a migraine-like pain in a migraineur, who describes the pain as “exactly like my normal migraine, just worse” will be a migraine)
– The nurse was apoplectic with rage that we wanted advice on whether to take a second Zomig, or to take morphine. We were treating them like a medical advice line!
– The nurse insisted that she knew EXACTLY, and much better than I did, how a hospital trip (to somewhere full of flashing lights and loud noises) would affect me, and that it wouldn’t be as bad as I thought. Despite our repeatedly explaining that I had EDS (Which she repeatedly told us she “Didn’t know what that was, so didn’t think it would matter”) which would make it impossible to travel.
-The nurse finally assented to send out some paramedics, who would do a better job at looking after me.

That converssation took something more than an hour. How Dearest didn’t just fling the phone across the room, I will not know.

The paramedics arrived, and were genuinely brilliant. Clocked my pulse and blood pressure (146bpm, 130/100ish) checked my pupil response (Pupils not responding at all, patient hissing in pain, eyes watering, flinching away from light) and sat with me as I took literally as much morphine as I could safely take (There wasn’t likely to be any interaction, but it was helpful to have trained people on-hand in case my heart stopped).

The pain started subsiding, down to about a six. Blood pressure, again – 120/80. 80bpm. The paramedics started to relent on the insistence that I had to go to hospital, and transmuted into “You should go to the GP tomorrow.”

Eventually, they left. I passed out.

Phoned the GP at 13.30 the next day, as the pain got bad enough to wake me up, and was resoundingly told off by the receptionist that I hadn’t phoned at 8am. All appointments, even emergency appointments, went at 8am, there was no other way of getting them. Even having been told by the paramedics that it was medically necessary. They were all gone. Gone gone gone. And I was a bad person for not being able to wake up in the middle of morphine-induced migraine-sleep.

I pointed out that it would be on her head if I ended up back in A+E that night. She gave me an appointment at 17.40. That appointment must have been available anyway, so I have no idea why she tried to make me not take it in the first place. Maybe she just enjoyed hurting people.

By the time I got to the appointment, my head felt like it was being trampled on, again, and I could barely lift my head. Not to mention the intense photophobia. The doctor – One I’d not met before, Dr A – was sympathetic, and took my heart rate again whilst reading the paramedics’ notes. 112bpm. Still worryingly high, but also very much proving my point that I was really in pain, not just complaining. He advised doubling my zomig dose (Taking a second one two hours after the first, if there was no improvement) and just calling the rest of the week a write-off.

It was pretty much Friday night before the pain even started subsiding, and it’s still ongoing as we speak. So looks like this is going to be another incredibly long migraine.

Desmond Strikes, part the second

So, when we last saw our intrepid hero, he was lying in bed, trying to sleep off the effects of a fairly minor-in-the-grand-scheme-of-things crash, and worrying about a smashed indicator and a parking ticket.


By about 7pm, he’d been persuaded to call 111, just to get checked out. The story continues;


“Is that a male name, or a female name?” “It’s just my name”


The dispatcher really needed to know. This was the most deadly important thing. Having found my records by my address, my full name, and my date of birth, they had to know. This was the thing that would determine if I was the right person, or some kind of imposter.


“Yes, but is it a name name, or a female name.”


I bit my tongue against saying “It’s the name I lowsided my bike in.” and answered. She seemed relieved. Now she knew whether to send the Cindy’s Dream Ambulance, or the Thomas the Tankambulance.


But the short version was that I needed the ambulance.


The paramedics arrived within half an hour, and were basically the traditional Good Cop, Bad Cop. One sympathised about how bad EDS was, the other demanded to know why I didn’t have a job. One commisserated about the bike and talked about his friends who were bikers, and the other told me that I couldn’t take my morphine or my stick into hospital, since I “didn’t need them”, and actively tookt he morphine out of my hand and put it out of reach. I didn’t have the strength to point out that this was immediately contrary to the hospital’s guidelines on medication, which say that you should always bring your medication with you.


The tone from both of them was pretty much “And you rode home, got changed, made yourself some tea, went upstairs, got into bed, and waited five hours before deciding that it was worth calling an ambulance? After crashing your bike and turning your foot through a hundred and eighty degrees? You’re an idiot.” but from one of them it was affectionate and understanding, and from the other it had a ring of disbelief about it.


Thankfully, the more pleasant one was the one who sat with me in the back of the ambulance, after they’d slid me down the stairs in an evac chair (Hell on theĀ  lower back, by the way, avoid if you can), and passed me the nozzle of the entonox. He said that if he’d not just taken my pulse (135) he wouldn’t have believed how much pain I was in, because I was keeping it together rather well. I thanked him, disclosed that as soon as I took the entonox the mask would crack and I’d just be like a normal person in pain, then took it anyway. It took two lungfuls for me to start crying uncontrollably and screaming in pain, then about three more before I wasn’t in pain anymore, and was just really upset.


On the drive up, we were overtaken by a delivery boy on a scooter, who was being flung aorund in the gale-force winds as much as I had been. No amount of financial compensation should make it worthwhile to risk your arse on wet roads in the dark, in gale-force winds, on a bike that weighs next to nothing.


We got to the LGI, I got settled into a booth for a long wait, and was plied with morphine. Nurses came and went, took my blood pressure and pulse, and it wasn’t all that long before I met the first doctor, whom I’ll call Dr RZ. RZ was really helpful, and very much into the school of “You have to look at, and touch, your patients as well as asking them questions.” He felt around my ankles, knees, hips, ribs, hands, the worst of the shoulders, and listened when I said that the pain from the crash and pain from EDS weren’t all that different – Both came with a lot of stiffness and soreness, both hurt when lying still as well as moving, both made things weak and fail to hold weight. He decided on x-rays for the knee, the hip, the whole pelvis, since a hundred-and-fifty-kilo motorcycle had fallen on it at fairly high speed, and the ribs, since they looked cracked from the outside. He also knew to ask the important question; “Is the bike all right?”


Radiology was great, and prompt – Two impossibly young technicians, both eager to do their jobs right and to make sure that the patient was fine and in one piece, who took endless views of basically all of me, whilst making cheerful small-talk about radiology in general. And then I was wheeled back to my bay to wait.


I must have waited quite a while, since it was nearly midnight when I asked if I could have a cup of tea, and was refused, and by that point I’d done a lot of embroidery and read a lot more of the Reverse Of The Medal.


It was one in the morning by time I was visite by Dr RZ again, along with another doctor who must have been an orthopaedic that I’ll call VT, because he was the tallest person I’ve ever seen. Now it was VT’s turn to try mobilising my leg, which he managed, and then said “Yep, this and the x-rays… You’ve got a chipped fibula. Which takes 13% of your weight, so walking is going to hurt.”


Comisserations were passed around, I declined having a pot on it because I wanted to be upand about, and I was plied with more morphine and told that I could go home.


And that was when I descended into hell.


I’d come out with no money, in my pyjamas, with only the bag that I’d taken out with me in the morning, which contained a towel, a notebook, a novel, some embroidery and, as I later realised, an empty bottle of morphine. So I went to the nurses station to ask if they could book me patient transport. Nope, they didn’t do that sort of thing, I should have thought about that before I left the house. They could give me a number for a minicab firm though. I tried six minicab firms, under their watchful eye, none of which were picking up, because it was a Saturday night at half past one.


The matron told me to walk down the corridor to the hospital account phone, since then the biggeest local minicab firm would have to pick up. Lo, they did not, even though I’d walked all the way through the department to get to the phone.


I came back to the nurses’ station. I was told that I’d just have to go out and try to hail a taxi from outside.


The nearest cab rank was at the railway station. So out I went, into a hundred-year-storm, freshly dosed with far too much morphine so I felt sick, in a pair of flannel pyjama bottoms, a t-shirt, one thick sock and one thin sock, trainers with the laces untied, a walking stick and a broken leg. At about half past one in the morning.


I was halfway to the station before a passer-by, a South African exchange student, stopped to help me. She gave me her scarf, sat me down in the lee of a building, phoned another dozen minicab companies for me, phoned two of her friends who had cars, all the while coming back to check on me between calls, to make sure that I hadn’t frozen or died, until eventually she managed to flag down a taxi for me. Grateful in extremis, I gave back her scarf and wished her well, and was still mumbling my incoherent thanks long after the taxi was speeding along the ring-road back to my house.


I got home, told Dearest and a few others that I had indeed ridden home on a broken leg, in a storm that had closed half of the country, and passed out in a heap on my bed.

Pop goes the weasel.

Yesterday night turned out to be a hospital night, or at least a paramedic night. Abdominal pain that started with “Oh, I have a bit of a cramp” and in the time that it took to send my partner downstairs to get a hot water bottle, had turned into something that made me curl up and scream and shake incomprehensibly. I managed the word “Ambulance”, apparently, and then everything goes a bit blurry until there was a nice but concerned looking paramedic putting the Entonox valve in my hand and telling me that if I could stop crying for long enough to inhale it’d get better, quickly.

I did, and it did. After enough gas to make me stop screaming, we worked out that the pain was probably a combination of an impacted bowel and menstrual cramps, all setting each other off and bringing in the sharp end of a migraine as well. A quick room search found the glycerin suppositories, I was given a nitrile glove, and thankfully both partner and paramedic understood that there’s some things that a gent must do alone.

I continued with the entonox, took the morphine, quickly disimpacted, then was given the choice; Accident and Emergency, the sensible, reasonable, thing to do, or sit here at home with blood everywhere, 80% of the pain, and the increasing urge to vomit. I decided to stay at home, unable to face going back to hospital two weeks in a row, and especially not A+E on a Saturday night.

So now it’s Sunday, and I’m still in horrible pain, and I’m still bleeding like a nightmare, but I feel a couple of stone lighter and I think I’m going to be fine, as long as I am much, much more diligent with the laxatives in future. Everything, everything hurts.

Next appointments:

18th Feb probably at 13.00 – Rheumatology, Dr D, StJ

23rd Feb 09.00 – Gynae LARC sedation clinc, DrGb, StJ.


So, once again, on a Tuesday after CBT (Discharged, and told I was doing really rather well actually) I found myself in accident and emergency – This time at StJ’s, and for myself, and with a serious rectal bleed.

No conclusions as yet, other than that it’s not an infection, and I don’t have gallstones. On the other hand, I was there and in pain until four in the morning, watching the snow build up outside.

Back at CBT, I was told that I was right – this was therapy for a problem that I don’t have. Which is good – I’m definitely dealing emotionally with the pain as well as can be expected. On the other hand – I’m definitely dealing as well as can be expected. Losing a few days to pain is just going to be normal. Self-harming to distract from worse pain elsewhere is “at least less damaging than what you could be doing”.

We’re now under a lot of snow, and unreasonably cold. I kind of want to give up.

Or sink, sink is fine.

So, last Wednesday I went to the baths. As usual. Swimming along as fine, as usual. Got a ping from the right hip, in the water, as usual, so hauled in to the side.

Felt pretty rough, so decided to get out. Gave my morphine to LT, told her that everything was normal but that it’d be easier if she held my morphine for me, since I was on paired crutches. Dragged myself through to the side, with the hip seizing up as I went, curled up in the showers… And couldn’t move my leg.

Crutched over to the lockers, started to get changed, covering the leg, and was standing up half-wrapped in a towel when LS (All lifeguards are going to be L+Letter, for anonymity’s sake) came in to give back the morphine. I told her things were basically all right, but with more pain and spasm than usual, but to come back and check on me if I wasn’t out in a few minutes.

By the time she came back in a few minutes, I was dressed, curled up with the dislocated leg sticking out like a dead spider, and howling. Things get a bit fuzzy from this point on.

I think either LS or LT phoned 111, and got an ambulance sent out. LS brought me the phone to get through to Dearest, but instead I got through to my best friend, who caught Dearest on Skype and sent him to me.

He arrived at the same time as the paramedics, who could give me nitrous oxide (and lots of it), but couldn’t reset my dislocated hip. Dearest, on the other hand, could.

Hip quickly reset, I was assembled onto a backboard, onto a stretcher, and wheeled out of the changing rooms. Information was taken, in the back of the ambulance, and I was allowed to go straight home. More or less, in bits.

So, since then, it’s been a week of morphine and misery. Debating never going back to swimming at all, since I’m increasingly causing too much trouble for the staff.

Kwik SaveR

This post was nearly called “The Gasman Cometh”.

Twas on a Tuesday morning that I tried to make a call

Wanted to see a doctor, since my moods had took a fall

The receptionist wasn’t helpful, she just hurried me along

And I can’t get to the walk in, so I must call “One one one”.

Oh it all costs money so the Tories can complain…

Twas by the Tuesday dinner time, I reached NHS Direct

They’re not always good on mental, so I didn’t know what to expect

The dispatcher was pleasant, but he didn’t have a clue

So he passed to to a specialist, since she’d know what to do

Oh it all costs money so the Tories can complain…

Twas Tuesday after dinner when the specialist replied

“I have to ask the questions, love” she said “My hands are tied”

I answered pretty truthfully, I wasn’t at my worst

But she sent the paramedics, without even asking first!

Oh it all costs money so the Tories can complain…

Twas Tuesday afternoon the Paramedic reached my door

I apologised for all the fuss, but she’d seen it all before

She believed that I was safe, and that Direct had got it wrong

But a second ambulance arrived – we’d talked for too damn long.

Oh it all costs money so the Tories can complain…

Twas Tuesday afternoon again, a little before three

The paramedic volunteered to phone my bloody GP

It took her half an hour and she had to raise her voice

But they’ll call me back this evening, ’cause they didn’t have much choice

Oh it all costs money so the Tories can complain…

And now it’s Tuesday evening, and although I hate to moan

I’m right back where I started, bloody waiting by the phone.