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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.

morwen: (Default)
"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.
morwen: (Default)
And then I took 300mg of ibuprofen, because I just can't stand being in this state any more. No effect yet.
morwen: (Default)
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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Abigail Brady

January 2017

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