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.

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Under the bridge, with my big tall hair.

Today I’ve got a migraine, being reigned in with the power of Zomig and soft green lighting.

On the other hand, my dislocated right hip chose this evening to slingshot back into its socket with an audibule “THUNK”, so it now hurts, but moves properly.

And I’ve printed out my whole month’s sleep schedule to take to the doctor tomorrow.

And I don’t want to go to the doctor tomorrow. I have a migraine.

Key:

M is morphine, d is diazepam, numbers in yellow are sleep, b is bike time, w is alcohol, xx is diphenydramine, s is swimming, T is the hour change.

sleep2

I still find that sawtooth pattern interesting, likewise the way that I seem to always wake up before noon unless I’m really going to be sleep-deprived if I don’t. If I was a betting man, I’d bet something along the lines of “The warming/light cues in the morning are recieved pretty much right, but the ones at night to tell me to switch off don’t work, so my circadian “night” keeps getting moved forwards, and getting shorter”.

Sirenidae

So, I have a migraine. The weather is as one would expect – Sudden pissing-downpour migraine (The pain localises behind the nose and in half of the roof of the mouth), rather than the high-dark-blue-sky kind of migraine (Where it’s above the brow bone and shoots down into the eye). Usually. I’d be coping with this perfectly well – Curl up, take a zomig and watch the telly under a soft green light until I fall asleep.

Unfortunately, today there are complications. Yesterday and the night before, something happened in my right hip, or possibly with my sciatic nerve, that means that I’ve not been able to move the leg for about forty-eight hours (Below is a diagram of where the pain goes – It’s ridiculously precise, there’s no generalised soreness, just on the points.)

paindiagram2 paindiagram

Anyway, this is incredibly fucking distressing. The ideal thing to do would be to curl up with a bottle of morphine and, again, go to sleep in front of the telly. Yesterday, I took 12mg of diazepam (A month’s supply), 90mg of morphine, and then had to fight to stay awake all day.

Because of the big complication – Night terrors. For about the past month, even when I’ve been full of sleeping pills, or so drunk I should have been out like a rock, or on enough opiates to kill a horse, I’ve had night terrors. I’m used to them – I get them usually about once or twice a month, so they’re not a mystery, but they’re still basically hell. No matter how many times you get one, they are the most frightening thing on earth.

I don’t know how to sensibly explain this. No matter what the most terrifying thing is that has happened to you in the real world, a night terror is worse, because it is just a complete chemical overload. Much like a drug high will always be more baffling and euphoric than a happy experience, a night terror is like a bad trip. And thus, well, I’ve not ben sleping – I’ve not wanted to sleep overnight, because waking up in the dark whilst having a night terror makes it 100% more likely that I will mistake the person I’m sharing a bed with for the night terror, and I will end up either attacking them or fleeing from them as I get back into consciousness (Sleeping on the settee in the Homelands was great, since I could leave the light on overnight, and didn’t have anyone to accidentally thump).

So, usually, at this point, I would start making up the sleep debt by having a lot of daytime naps – A night terror during the day is still horrible, but there’s less crossfire. Of course, having night terrors has one big further complication – Sudden, uncontrolled movement. The body thinks it’s under attack and needs to do anthing to survive.

That means waking up with a massive startle response. Which means flinging my leg across the room and doing a load of damage and making it worse.

And this is basically how seemingly-unrelated things can make each other worse. Lack of sleep makes the migraines more likely, night terrors make me sleep less, migraine means needing to find a comfotable position to rest in, damaged hip means that there is no position to rest in, pain from the hip makes the night terrors worse… One big happy vicious web.

Eight days until my CBT. I had better be feeling better by then. Thankfully, the NABD seem to be really helpful and supportive and everyone there I’ve spoken to has been encouraging and certain that I should do well when I try again. Also I’ve got my first copy of Open House, and it’s got tonnes of pictures of adaptive devices in it, which mean that even with one leg out of commission, I should be able to get a grant to get a Kliktronic fitted, and thus to be able to ride.

All I need to do is be in one piece next Saturday. I’ve not swam in eight days, so I feel impossibly creaky, which isn’t helping. I might aim for the open swim tonight – Not a full-on lane session, nothing tiring, just a bit of gentle floating.

Cherry Menthol Sea Monster

So, my two days up North were actually awesome. I’d packed light (Everything I needed fitted into the pockets of my leather jacket, including a change of clothes, a toothbrush and toothpaste, medication, soap, a support bandage, phone, wallet, keys, passport, notebook, multiple pens and a selection of empty vials for emergency use) meaning that I didn’t have to worry about where I was staying – No need to check in to the hostel, or commit to catching the last train to Algernon’s or back home, or to staying with Sambuca, I could just see where the night ended up. One of my big fears is of being socially stuck with people for extended periods, so having a handful of options which would let me have the option of sidestepping society was an important part of persuading me to travel. Even knowing that Sambuca always has a spare bed made up for me, I’m still always going to book a hostel bed in advance when I do this again, just in case.

Met up with Sambuca outside the railway station, and immediately launched back into the same conversations we’d been having in 2006. I seem to have a damn good record on having long-time friends who are really good at taking all of this in their stride (Other than the obvious exception, who will probably get his own blog post one day). We went up to Westgate and ogled about a million bikes. I have seriously fallen for a secondhand Suzuki VanVan; 2014, just over two thousand miles on the clock, previously owned by a couple who used it to pass both of their CBTs, then their Direct Access, then sold it back to the dealership and bought two Triumph Tigers. Every review of the VanVan that I’ve seen has included the words “Squidgy”, “Easy-handling”, “Gentle” and “That back tyre is verrrrry interesting, it’s good on dust and cobbles and makes the low-speed handling really forgiving”. So it’s not just a bit of pretty arsecandy, it’s a sensible machine for a nervous novice.

After that, we got a quick curry, then retreated to our old table in our old pub and sat until one in the morning, drinking a dozen bottles of brown ale and looking at photos of Tokyo (Wow, my ability to read Japanese goes downhill fast when I’m drunk) and photos of our mutual friends’ innumerable children (All, mysteriously, ginger). It turns out that, other than me, everyone still lives within half a mile of the river and east of the bridges and other than a couple who have gone into coupley hibernation, everyone still goes on on a Saturday night. Bliss.

Anyway, by time we got back to his house I was both very, very drunk and had put about a quarter of a bottle of of morphine down my neck to try to stop my hips and clavicles from completely destroying themselves. I’d nearly passed out from pain a couple of times in the pub (More alarming for Sambuca than for me) and had struggled to manage the steps down into the cellar, so I slept in the living room in what could only sensibly be described as a morphine coma, finally being woken up at ten when, in Sambuca’s words “The house woke up”.

I went up to get a shower, and found that my towel still had the tags on it. I came down for breakfast, and there was a whole breakfast bar set out, with four kinds of cereal, multiple teas, and toast. I was informed that the family had gone out, but that all of this had been laid on entirely for me. Basically one step behind buying a hat. And we sat and had a very civilised breakfast, with toast and marmalade, then he drove me down to the far side of the river to catch up with Algernon.

Algernon turned out to be very much trapped at work (match day, in the one pub in the village with satellite), so instead I wandered down to the seafront and managed to get caught up in a massive charity drive on the main street for the long-abandoned saltwater swimming pool – Built in the 20s, used as a pool until the 80s, turned into coldwater scuba training until the 90s, and then filled in with sand and rocks in an attempt at turning it into an “artificial rockpool”, which failed miserably and the whole thing continued to gently rust and corrode into the sea. So I decided to take a walk and went down to the abandoned pool itself and had a good look at it – Amazingly, I’d never seen it before in my life (There is a massive cultural divide between the north and south sides of the river) and it was more than a little eerie, thus perfect. Two massive tanker ships loomed prow-on, turning before they came into the river, but at the moment looking alarmingly like they might smash into the white-painted metal railings. The sea lapped up against the concrete base of the structure, the odd wave crashing over the side, and more water flowed in through the old infill pipe. I stayed for a while, standing where the old diving blocks would have been and sighting along the fifty-metre stretch which was once the main tank, sitting on the concrete steps which made up the viewing gallery, and trying to work out where the old changing rooms would have been. The whole site was strangely resistant to being reclaimed by nature, and it felt more like a ship in a breakers’ yard than anything else. I bought a T-shirt from the fundraisers on the way home, shared what I knew about its long-destroyed sister pool on the south foreshore, and promised to keep in touch.

From there  it was just a matter of getting back on the local train, then the regional train, then back home within three hours. The migraine was kind enough to wait until I went to bed to strike.

Today I am completely destroyed. My clavicles, which were complaining about being upright for so long, have gone on strike and crawled up my throat, my right hip is an immobile wreck, and my wrists are making a noise like a succession of bathroom sinks being thrown off a towerblock roof. But it was worth it.

And lo, that’s the end of the stressful week. Now I’ve only got two things to do in August left – Meeting up with Best Friend for his birthday, then doing my CBT on the 22nd. I think I’ve survived it.

Thunderfuck

I am a very sickly Zebra today.

The day before the General Election was a long one.

Physio first. Very kind, very honest, community physio – Asked me all the right questions, was incredibly sympathetic, spotted my popped hip from the far side of the room and through a tracksuit, knew what EDS was and had treated EDS patients before when he worked for rheumatic physio… And admitted straight away that I was too complicated a case, and he couldn’t help me under the remit of the community physio. He also volunteered to chew the ear off my last physio at CA, the same as Dr D did, so that man is going to have the most in-demand scalp in the county. Sixteen-plus years of ongoing pain, with the hypermobility complications, needed more time and effort and specialist knowledge than he could swot up on, so back to the hospital for me. He was what I’d call a “proper physio” – A grey-haired ex-rugby forward, who enthused about keeping fit and said that I was doing all the right things by aiming for ten kilometres in the pool per week,¬† assured me that missing that goal wasn’t the end of the world, and that even trying was better than most people would do, and said that he wished me the best of luck, regretted that we couldn’t work together, and that if anyone was ever going to recover completely, it’d be someone like me.

I’m not sure if that’s just a platitude that everyone says to every patient, but a hell of a lot of knowledgeable people have said it to me, so it makes me feel a lot happier and more encouraged than otherwise.

I actually felt encouraged enough that I went for a swim. I’m continuing my strategy of taking neither crutches nor morphine to the pool, so that I can’t overwork myself in the opiate hubris zone and end up collapsing on the way home. 500m in about 15 minutes, with the limiting factor not being myself, but the fact that the pool was bedlam – Seven to a lane, one of the ropes completely slack, Medium lane full of slow people, Fast lane a combination of pissbreathers (Those people who swim in such close formation that they must be right in eachother’s stream if someone suddenly feels the urge), people doing deadly serious drills (whom I didn’t want to interrupt), one incredibly elderly water-polo player (who was covered in what looked like WW2-era forces tattoos with whom I had a lovely chat about both water polo and the history of the local pool) and me (he of the incredibly erratic split time, even more erratic accel/decel out of turns, and tendency to stop in the middle of the lane every few dozen lengths to reassemble).

Deciding that I was better off taking the small prize rather than knackering myself in a suboptimal pool, I called the 500 a win, and went home.

Then the GP, which went really well – Dr L, someone I’d not met before. Nice, genuinely approachable, said to give her a week to do her reading, then come back and get a referral. Next appointment on the 20th.

Upon returning home from the GP, I found that Dog had eaten a full bar of Bournville. I’d been gone for literally twenty minutes, at most. Panic stations immediately manned, I dragged him off to the vet to get an injection of abomorphine (a REALLY potent emetic), then sat stroking his back and making generally reassuring noises as he vociferously chundered all over the vets’ car park. Whole bar accounted for – Seriously, it looked and smelled like a patissier with a grudge had iced the whole yard in cheap chocolate fondant – We went back home and sat in the kitchen, him looking terribly sorry for himself and me terrified that he was going to have some theobromide still in his system and have a heart attack. He’s a very old man, in greyhound years (He’ll be ten on the 4th of July) so this wasn’t a stupid fear.

Did not sleep well that night – Every whuffle and twitch from Dog woke me up in a panic.

Next day was the General Election – Tasks do do; Get to the vet to sign my insurance paperwork (To keep that bar of Bournville from being the most expensive that I’d ever purchased), and go and do some democracy. The local polling station is at the end of the road, so I thought I’d do one round-trip; Up to the vet, then back down to the church hall, then home. After the previous day, and the night earlier in the week where I’d been awake for something like 40-odd hours having a bit of a manic episode, I was anxious as fuck for a number of reasons. So, I took along Dog in his semi-official capacity as my assistance beast. Not a joke – It’s all there in my psych notes that due to fairly nasty PTSD I sometimes need to have Dog with me in order to function like a normal human being, and most people are fine with this (He’s lazy unto the point of appearing well-behaved, quiet, doesn’t shed too much, and doesn’t leave my side. The lead is basically for show – I’ve led him through a field of lambs with the only tether being a piece of wool from my wrist to his collar, and it didn’t even go taut once.)

I knew in advance that anyone is legally allowed to take their dog into a polling station (There’s no chance of my dog being a paid shill, swaying my hand to vote for his candidate instead of mine) so I walked in through the newly-opened disabled entrance with him at heel. Only to have his lead taken out of my hands (No asking, just taken) with the explanation of “The other attendant is scared of dogs”. I started to panic, and as I do when on the verge of having a massive PTSD meltdown I saw the path diverge – One path said “Deck the shitheel that’s taken your dog”, the other said “Become compliant and get your dog back”. Thankfully, since I have no choice in which road I go down, my proverbial BIOS sent me to the DOS of total basic obedience, rather than the obscure Linux distro of uncontrollable violence. I’m pretty sure that at this point I went to the bench, took my papers, marked them both appropriately, then got Dog back, since the next thing I remember particularly clearly is sitting outside the polling station with my face in Dog’s shoulder, shaking like the proverbial shitting greyhound.

I made a mental note to go back and correct the attendant (You don’t just *take* a man’s dog, you ask if you *may* take it. Not all service dogs wear the big yellow harnesses. Not everyone’s dog is comfortable being handled by strangers, so you could well get bitten. I can only assume that if a blind person came in avec-chien, then the dog-hating attendant would have to leave the bench. Assume that as the priority one solution next time) but didn’t have the strength to do it. Instead, I just went home and tried not to think about the election much. I failed – Slept from about 2am to 4am, woke up to a world of nightmare.

So, yesterday, the day after a Tory government of only borderline legitimacy took power (That’s a tiny minority, and that’s even with the constituency boundaries largely favouring them), I woke up feeling like shit.

At first, I took the pain in my abdomen to be just the continued saga of this fucking coil. By about 13.00, I was concerned enough that I told Dearest and Best Friend that I might be going to hospital. And then the gastric distress started, and I shelved that idea. Somewhat like a bloke with lymphatic filariasis localised to his cock, first I was pleased, then a bit concerned, then incredibly concerned, then I wished I would just die. For context – First I thought that I was just reasonably disimpacting after what had been a horrible week, then I thought that I had a spot of diarrhoea, probably from the severely dodgy out-of-date popcorn and absinthe I’d had for tea the day before, then I thought that I might be having an adverse reaction to the doxycyclin… By 3am, when I was literally passing nothing but bile, stomach acid and water, every ten minutes, uncontrollably, with so little warning that I couldn’t leave the bathroom, I didn’t care what it was, I just wished I was dead. It hurt (Hydrochloric acid failing to neutralise as it passes through the digestive tract will do that), I was getting cramps from the rapidly-changing pressure and bloodflow in my already-tortured abdomen, I was trying to vomit but nothing was coming up, I was utterly knackered and dehydrated.

Oh, and did I mention that this is on top of terrifying chest pain and heart palpitations after trying to ward off a weather-induced migraine with an ill-advised Sumatriptan at 17.00? I was so ill with that (unable to move, curled up in bed, sweating, shaking, struggling to breathe, vision going blue and grey from lack of air) that Dearest ended up cancelling his night out to look after me. I’ve had bad reactions to Suma/Imigran before, but never this bad. Suffice to say, since I genuinely thought I was going to die, I am not taking it again.

So, yes, by 3am I wasn’t sure if it was going to be the heart attack or the dehydration that would kill me first. Drowning myself in the bath was a close third.

I must have got to sleep with the aid of a lot of morphine (Good for both the pain and for stopping the bowel from moving) and diazepam (good for slowing the heart rate and relaxing the intercostals, letting me do a few breathing exercises) because according to Dearest I was singing the Russian national anthem very loudly at about 4am, but he thought it would be unethical to wake me up since it’d taken so much effort for me to get to sleep in the first place.

I woke up at about five, had a brief conversation with Dearest (Reassuring him that I was all right, and not actually about to drive a military parade of rockets on floats down Briggate), and have returned to my nest on the chaise longue.

Today has infinite chances of being better than yesterday. In a bit, I’m going to see if I can drink anything without feeling as if my heart is being stepped on, have another shower, ring NHS Direct to see if I should be worried (And to ask whether I can just stop taking the doxycyclin, since another week of this would literally kill me since I can’t eat or drink), and bizarrely hope for a migraine (The surefire sign that I’ve metabolised the Imigran out of my system and that the chest pains will stop).

So, yeah, my awesome Saturday plans are “Have a migraine” and “Try to drink some ginger beer.”

Then, Sunday is the cricket, Earnshaw willing.

Boris Gilt Rides Again

(Not a reference to anything external, sadly. Boris Gilt was a golden kirin that I once dreamt/hallucinated, who was sitting on the toilet in my old flat, holding a copy of the Financial Times and wearing a bowler hat, and when questioned as to why he was there responded with “Sorry, Charles and Charles had a prior engagement and couldn’t be here.”)

But really, guilt. Today has been all about guilt.

Things that have been too painful, exhausting, or confusing to do;

-Eat

-Put on clothes

-Watch TV

-Talk to best friend over Skype

– Interact with Dearest at all, including simple conversation

So what I have done today;

-Laid on sheepskin, staring at ceiling

-Tried to watch TV, but instead kept interrupting the episode by finishing the conversations I’d failed at earlier, making both impossible to understand.

-Made mess in kitchen, left half-full bowl of bright yellow curry on settee.

-Made mess of settee by kicking the cushions around in circles whilst trying to get comfortable.

-Returned to lying on sheepskin, sleeping.

Basically, I feel as if I should be being a better partner. And my migraine is back, with not so much a vengeance as with tiny niggling pains all over.

Tomorrow I intend to buy new pillows, probably of the massive bolster kind. They make everything better. Also new sheets, since the ones I have are wearing thin, and new curtains to block out the bloody stupid flashing light opposite which is almost certainly part of the problem. I also really want to get some green glass lamps, the ones with the little folding glass doors in the metal frames, so that I can have green candlelight to fall asleep in.

GP appointment on Monday at 17.00, to talk about migraines and medication. Probably a good start.

To worse

Back from the doctor, taken a sumatriptan.

Head pain worse, feel more queasy, dizzy, chest pain, muscle twitches all over. Very confused.

Next appointment Monday. Kind of want to go to hospital instead.