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I have been back at work since last Monday. Not by any means back to normal functioning, but I had got to the state where I thought it was best to try. I have trying to take it a bit easy, mind, avoiding the normal rush hour. They have moved me into a quiet part of the office on Monday (having put in a couple of partition walls), which is helping so much.

I have not updated much. So, I have been continuing to not take any painkillers - I think the last I touched was some ibuprofen late in January. I went to a private neurologist a bit before that, and was told more or less the same things as the first neurologist had said, but he actually explained stuff, and agreed that diagnostic tests ought to be done. I am now waiting for another NHS appointment to try and persuade this one of that.

That happens at the end of March. By then I will have not taken any NSAID or opiates or over two months, which should rule out side-effects from frequent use of those as a cause of the new symptoms. I have a small stock of sumatriptan which is magic, but I am also trying to avoid using more of twice times in any seven day period, because the internet thinks those can also cause medication overuse headaches. Right now I would love dearly to take one, but I have only 2 left and I already took ones Thursday and Saturday. Maybe I could try a codeine: it has been a long time.

Because it's those new symptoms that are continuing to really scare me. The phasing out and the feeling of shifting pressure inside the head and eyes, possibly circulatory related. As this continues I have been able to get a better handle on what triggers it. Lying down is a killer, and so is closing my eyes, or not thinking about anything. I still have no idea about what might be doing that. Google suggests sinusitis, which is another thing to add to my list of things to be worried about, might be another autoimmune thing, and would also explain why the virus I had early in Jan really knocked me out.

Additionally, would you believe it, my joints hurt a lot more now that I'm not taking any painkillers. Shocking, eh.

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So, obviously the GP focused on the bit at the end of the OHA letter that mentioned I'd sought treatment for depression that one time (2001/2002), and the entire neurologist's letter where he says anything that isn't a result of medication overuse is psychosomatic, and wanted to refer me to a psychiatrist.

I saw the GP's referral letter. He really crudely outed me to Homerton Neurology, for no reason I can think of.

As I just said on twitter:

Thinking about it, neurology is going to be a bit of of a minefield for #TransDocFail, isn't it. It's not something that neurologists are trained in, and I could imagine them deciding it's a mental illness. And then once you've declared someone has a mental illness you are more likely to write off problems they report.

So, that.

And they'll know that you shouldn't say that it's a mental illness, so they won't write that, but they'll let it inform their decisions silently.

I have an appointment to see a neurologist privately tomorrow, because I need a second opinion and there is no way that I - or my work - can wait around for another month for another short appointment. If I'm going to be dismissed again by another neuro person I at least want it to be quick. I have no idea if this is going to be covered by insurance ("pre-existing condition"), but hey, I don't care. I need that diagnosis.

But what happens if I continue to get the runaround? It doesn't even bear thinking about.

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"However, over the past nine months there are different symptoms. She said things started when she had two occasions when she felt dissociated for a few hours, with some general shakiness of all the limbs. She got quite upset about these. She was seen at the City Migraine Clinic at Charterhouse, they gave her Domperidone and Ibuprofen for acute migraine attacks, as well as 10mg Amitriptyline for prophylaxis. She tried to increase the prophylaxis but got sedated at 20mg."

not accurate, I got sedated at 10mg and didn't even try the 20mg because of this.

"I understand you changed this in the summer to Atenolol 50mg, but she subsequently stopped this because of the lack of efficacy".

not accurate, I got changed by the Charterhouse clinic again, and stopped because I got frit that this was causing the new symptoms from November.

"Please note that Atenolol does not really work as Propranolol in headache prophylaxis. Nevertheless, her symptoms got a bit better in the summer.

However, there were various issues including stress at work and she obviously spent more time at home than at work."

Not over the summer! The summer was brilliant! I'm not sure where the hell this "she obviously spent more time at home than at work" thing came from. I didn't say anything like that, and it's not true. Does he think he's Sherlock Holmes?

"From November 2012, she has been getting a different type of headache which is daily in nature, pulsating, usually on the left side all the time, feeling itchy, and she has been taking a lot of analgesics with daily Ibuprofen with Codeine on top, sometimes every few days."

This is true.

"In addition she also has none physical symptoms with lapses of concentration, she may stare at things for some minutes, she has poor sleep and is not refreshed in the morning, she has become more anxious, she feels that she has word finding problems, and her memory and concentration are worse."

I think anyone who knows me and has seen me recently would testify that this is more than me "feeling" I have word finding problems.

"She admits to some reduction in her mood."

Gee, you think. Note how this is couched as "admit".

"The neurological examination was entirely normal."

I'm not qualified to comment on that.

"There was a bit of muscle tension around the neck."

That would be caused by my hypermobility, by the way.

"The patient has chronic daily which is not migrainous. This is exacerbated by analgesic over use. I suspect that main culprit can be linked with her poor sleep, anxiety and possible low mood, hence she has got various other non headache symptoms, including concentration, memory and word finding difficulties."

I had poor sleep then, because I'd been trying to avoid taking analgesics. It's not been poor generally.

"I have reassured her that there is nothing untoward from the neurological view point,"

I ask you!

I was not "reassured" in the slightest by that appointment.

"and in order to get better that it is important that she really tries to reduce the analgesic used, for example, down to two tablets a week level."

I stopped. Since the 13th I stopped outright for about two weeks, and have only broken this to take 300mg of ibuprofen, one time it got particularly bad, and then on Tuesday I think I tried a Paramax. Neither had any substantive effect. Overall the withdrawal of analgesics hurt like hell for a few days but the head symptoms are not back to more or less how they were. Funnily, my joints hurt a lot more than they did prior to this! (he didn't ask me whether I needed to take painkillers for other reasons. I do.)

"In terms of restarting the prophylaxis, I will leave that to your capable hands. I told her that, in fact, the main thing to treat the underlying poor sleep and anxiety in order for all the symptoms to improve."

I do not have underlying poor sleep and anxiety. What poor sleep and anxiety may exist is largely caused by a health service failing to diagnose me properly, and my skepticism about whether I will just magically get better in the absence of any treatment.
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And then I took 300mg of ibuprofen, because I just can't stand being in this state any more. No effect yet.
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The appointment on Wednesday went well. It was more an occupational health assessment than a diagnostic appointment, but I will get a letter out of it that I can wave in front of my GP next week saying that she thinks I should have all sorts of diagnostic tests and see various specialists. I have not taken any painkillers since the 14th. This has been... interesting. Most obviously the joint pain has come back. Headwise, things were rough for the first week, but now I think it's levelled off into a kind of brain fog. I am doing particularly badly at speaking and remembering to eat and just generally coping with pottering around the house. I don't know if I should start back up on the ibuprofen or not. So very tempted.
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And just as I had feared, I have Really Bad migraine today, which is not being budged by painkillers. Shouldn't even be looking at screen now, really.

I started taking some nutritional supplements about at the start of March. I wonder if it's them. The internet has lots of people with anecdotes about them causing migraines/headaches. I think I'm going to stop them.
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I've been on the amitriptyline for a fortnight now. Since I've started I managed a full (short) work week of the 8th-11th, was really migrainey the 12th/13th, and then the next week was incapacitated on the Wednesday and worked from home on the Thursday. This weekend was really good - I managed to go to the Kapow! Comic Convention both days, and it was the first non-migrainey weekend I'd had in quite a while.

I am a bit nervous about tomorrow, as it's a Wednesday, and there seems to be something about Wednesdays lately that's setting them off.

I was supposed to be increasing the dosage from 10mg/day to 20mg/day now, but I've decided to delay this for the moment, as I'm finding the drowsiness in the morning side effect quite problematic.

On other fronts - I have tried a little bit to improve my environment at work, but it's quite tricky. I have invested in some noise-cancelling headphones, which show quite how insanely noisy the office is, and I've been listening to familiar music a bit, which is helping a little. I have failed to get my eyes tested. I really should do this. Perhaps this weekend, although this weekend will be busy, what with my lodger moving in on Thursday. (Oh, I didn't mention that, did I? I am renting out the spare room! I have lived alone now for over five years, so it might take some getting used to...)
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The Migraine Clinic was useful. They've gone through triggers and told me some stuff I didn't realise before. In particular, I hadn't realised lie-ins are a common trigger. I am now going to try getting up when I wake up, damn the clock, and see what that does. I have also decided to try sleeping in the (darker) spare room, see if that helps with regularity of sleep.

I apparently should not have been on the paramax in the first place, at least not 4 daily. It is more commonly used for an attack, not as a preventative. Instead for that I am to take amitriptyline. For attacks I am going to take domperidone with ibuprofen. Apparently the anti-emetic component of this actually helps absorbtion of the painkiller part due to its effects on the stomach - that's why ibuprofen usually doesn't work for me, because it just isn't getting absorbed.

He asked whether I'd had a head scan done - I was able to show him the results of the MRI I'd had done in September. He definitely thinks I should push to see a neurologist based on that.

I should change GPs. But I also need to get a script for the amitriptyline (I had a private prescription for 28 days). So I think I'll make one last appointment at the existing one to get that, and then find one in Leyton/Leytonstone to register with (any recommendations?)

I am now back at the office for the first time since I get sent home on Wednesday.
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I worked from home today, for I think the first time since I started. I avoided triggering the background headache into something worse, and was in fact really productive - got lots of stuff done.

Spent the morning setting up my build environment and the VPN while tidying up a patch I'd been working on for several days, and then spent the afternoon investigating various bugs. Going to try go in to the office tomorrow for our Sprint Review.

Meanwhile, the London Migraine Clinic called me back today, and I'm going to see them Tuesday morning.
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Back when I first saw the neurologists ten years ago, they thought that I was getting medication overuse headaches (aka rebound headaches). Back then I was only taking the painkillers because of the headaches. Nowadays I'm also taking them to deal with joint pain. What if I have to choose between medicating the joint pain and not provoking the headaches?

Of course, thinking this is not helpful for my stress levels. Which are also a contributory factor.

Why can't I turn my stupid brain off?
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I got sent home from work due to migraine again. Off my food and felt nauseous at lunch. I restarted paramax a couple of weeks ago, which contains the anti-emetic metoclopramide. I've been trying to take this four times a day, but I've sometimes missed it on account of really needing codeine instead and not wanting to take too much paracetamol. (And in any case, it has ├╝ber-drowsy reaction with codeine).

But I am not sure it is helping anyway. And I was getting akathisia a couple of weeks ago when I had to be sent home the first time, and I appear to be getting drowsiness symptoms. Perhaps I should stop it now and then go back to spot use migraleve, perhaps I should persist properly and try to stop the codeine entirely?

Work have tried to reassure me, and there's some talk of just sending me to a neurologist. I'm sick to worry with it, still. But I've now done what I should have done years ago and self-referred to the City of London Migraine Clinic

I've not sorted my glasses out yet. I might try doing that at weekend if I feel up to it. If not, then soon. I have ordered a thermostatic valve of the sort that I believe ought to fit on my bedroom radiators - it may arrive tomorrow and I will try installing it.

I have people coming round soon. I hopefully am going to be OK with light company and TV watching. I had planned to cook, but I don't think that's likely now.


Sep. 22nd, 2010 06:25 pm
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It's done. Not so bad. Results in 4-5 working days. Feel a bit weird now.

Posted via

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Weekend was good, and life is looking up. :)

[ profile] karen2205's picnic in Cambridge in Saturday was a success, and people seemed to eat my flapjacks.

Horrible headache this morning was displaced by drugs. Some inconsiderate people were having a music festival in Finsbury Park, which didn't help, as all I could hear in any room of the flat was a dull boom boom boom. So I started listening to complicated-textured metal and that seemed to make it go away. Headaches are strange, sometimes.

Then went to pub this afternoon. At first it was just me and [ profile] psych0naut, but then [ profile] nyecamden and [ profile] aster13, followed by [ profile] shevek and then a surprise afpmeet, and then a [ profile] ali_in_london and a [ profile] khalinche (not forgetting all the people i'm forgetting, of course). so the evening was full of beer and talking and otherwise enjoyably interacting with nice people.

bedtime for abi now.
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after a relatively good weekend (but still not good enough to risk going clubbing saturday), monday and tuesday were not the best days for headaches, but neither did i need to take anything. today, destruction noises are really starting to get to me along with other things, so have taken 50mg sumatriptan. we'll see.
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yesterday and today have been a bit worse for pain than the weekend, but so far it has not been entirely incapacitating. by this point i would usually have taken painkillers. looking forward to early night this evening, and then all being well, going to loos meet on thursday.

i want to go see the Comedy Store Players (for those of you who don't know, this is essentially the original stage version of Whose Line Is It Anyway, still going) one Wednesday in the next few weeks. anyone up for this?

[Poll #1203324]
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posted house keys to [ profile] notajeep.

worked late monday & tuesday; experienced what i assume to be a migraine-aura yesterday (flashy zig-zag multicoloured lights; pretty, albeit totally distracting.). despite having migraines i don't ever remember getting one of those. so made sure to not stay too late today. this is made easier by the fact i'm crossing more things off my list of things that had to be done by last friday than are being added to it.

is it significant that 'chant' is a fragment of the word 'enchanter'?
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been sleeping really badly all this week, and bad headaches. had to go home from work early on friday because i wasn't physically capable of looking at monitor anymore.

had recovered enough by this morning to go shopping in nottingham with [ profile] vjbseven where i utterly failed to buy any cool new clothes. i did however get a copy of The Dark Knight Returns which I am now reading. early night tonight though, I think. (insofar as post-11pm is early).
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another migraine. i don't know what triggers these off. i haven't done anything out of the ordinary today or anything.

i was told some years ago by a headache doctor that they weren't "real" migraines, but just tension-related hedaches or something. and that if i relaxed they would go away. which kind of feels like i'm being blamed for them

but i don't see how. i get kpain, right now mainly behind and a little to the above of my left eye, along with strong light aversion and not liking nloise. they have been incapacitating and i hope they aren't again. if i get a bad one nothing i take seems to stop it.

i need to fix this. it was supposed to be fixed already.


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Abigail Brady

May 2017

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