HRT? No thanks, I’ll pass.

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First of all, the last thing a migraineur needs is dosing with oestrogen and second of all the last thing a spoonie needs is a new slew of drugs and their side effects on top of whatever nest of medications they are already juggling. Woah – there’s a mixed metaphor for you, and as good an illustration as any of just how MESSY things can get with multiple medications.

Anthony Goicolea. Pathetic Fallacy Drawings. Wolf in Sheep’s Clothing II

A quick look, then, at what symptoms HRT attempts to address;

  • hot flushes
  • night sweats
  • vaginal dryness
  • loss of sex drive (libido)
  • stress incontinence: leaking urine when you cough or sneeze
  • thinning of the bones: this can lead to brittle bones (osteoporosis)

(from the NHS page on HRT)

I started getting night sweats a couple of years ago. What with my already multifarious symptoms I kind of put it down to more fibro crap. I’d wake up with wet hair and a soggy duvet. It’s worth sleeping alone if this is going to be exacerbated by a partner, or if they are in any way irritated with you – their irritation is something you can probably live without. It did pass, though. I don’t get it any more, so it wasn’t forever. I have a bath in the morning anyway, and really, that seems to me to be good enough. That is to say – not worth taking a drug for.

Hot flushes. Hard to say when this started since it overlapped with getting too hot taking the dog out, ending up sweating and then having cold sweat next to my body. By the time I had problem solved the dog walks the spontaneous hot sweats were only an addendum to my problem solving prowess. This is what I did – I bought merino wool thermal vests. These can be worn on their own in the summer, since they don’t look particularly like underwear, and can be worn for exercise as well. Like cashmere, merino wool is excellent at dealing with sweat AND it’s smell. Cotton tops just get wet and stay wet and are horrible. They also have to be washed after one wear. Not the merino or cashmere garment. The fibers wick away the wetness so you stay comfortable, and don’t stink up, so you can wear them for several days. They wear well, too. I bought my black long sleeve ones a few years ago now, and they are still going strong, and I have just bought a cami vest to try out, and if it is good I’ll be getting another couple. Because you don’t need to change them you don’t need to buy many.

My other thing is that rather than have my hair short I just always have a hair grabby thing handy. If I am hot I put my hair up, if not I let it down. I wash it most days. Evidently ‘late’ middle aged women seem to have taken to having short hair in droves. It’s up to you, it’s not the LAW.

Be careful if you get vaginal dryness. I haven’t had a problem with this so far, but having worked at Sh! I happen to know that lubricants have different properties so it’s worth getting a bit of advice on which brand to go for. Some people’s bodies are a bit trigger happy with thrush, and I know that some lubricants are more advisable than others for this. You can get a basic one on prescription, but it’s not a medication as such, so has no systemic effect. Also, again with the cotton, or even worse, man made fibres. Silk knickers are the most breatheable.

Sex drive? Meh – it’s not brilliant, but I’m alright once I get going. Not being very sexually driven is a bit of a relief actually. I wouldn’t medicate for it. In any case the female version of Viagra is a massive dose of hormones – which for the migraineur, again a no no.

Stress incontinence is not something I have a problem with, but then I’ve never given birth. Kegels. I guess? And those disposable gussets? Develop a no sense of humour rule? And no sneezing. Definitely no sneezing.

Brittle bones. This is something women can be prone to. The answer is weight bearing exercise. If you want to, or you are too posh to do your own housework then go to the gym. Personally, I’m doing what I can within the limitations of my spoons.

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HOWEVER!

I do use one hormone. And it’s a good one. Because of the migraines, and the really AWFULNESS of hormonal ones I have used  progesterone based contraception for many years. I have had injections and pills over the years, but eventually I started getting some side effects so I was offered the Mirena coil. I’d never fancied coils much, since I always imagined they would stab you to death from the inside. This despite there NEVER being any headlines about women being stabbed to death by their coils. Regular coils are, again, a no no for the migraineur, since they actually make periods heavier (and with endometriosis in my picture, too, any blood is too much blood, so too much blood is WAY too much blood). The Mirena coil, however, has a tiny release of progesterone which near enough stops periods entirely. This genius piece of engineering is staying in until it is ALL OVER. It’s quite new, and maybe it’s a bit expensive, because it was slightly tricky to get, but you know, they actually use it instead of hysterectomy, so good it is at it’s job. And this, bubs, can also be good for seeing off any cheeky little womb cancers that think they might like living in your pouch.

So that’s my plan, anyway, and so far it is working for me. It’s up to you what you want to do, but HRT is not the only game in town. It’s an option, but not for everyone.

A Day Out with My Brain

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To the trains!

Today was a most intrepid day. I had Bowen lady followed by a neurology appointment.

to the trains!

Ten came with me, because, you know, traveling. The first half of the day was easy enough, but by the time we’d done it all I needed serious supervision to get home.

I’d wondered what he was going to do for the hour I was having the Bowen treatment, but I needn’t have worried, he’d already hooked himself up for a hang out. Turns out he has a friend who runs an arty bookshop just round the corner. We were a bit early so I got to meet her. She was very nice and advised me about selling my signed Damien Hirst book, which might be worth a bob or two.

I’d thought we should eat in Bethnal Green, but I felt too nervous, and wanted to be as near the hospital as possible in case of EVENTS and being late and everything. I am hardly ever late for anything. I get too nervous. Then I am stupidly early and have to hang around.

So it was a happy thing that Ten remembered the cafe at the Mary Ward Centre, where I taught once upon a time, so we went there because it couldn’t really be nearer the hospital without sitting in it’s lap.

***

This hospital is the National Hospital for Neurology and Neurosurgery so you’d think all the doctors there would be pretty fancy. But no! It turns out my doctor was “only” a neurologist, and I would have to go to the extra super fancy Headache Clinic there to get the botox, but get it I very well may – ON THE NHS  no less. And at £600 every three months to get it privately  it’s rather worth the wait to get it free. Eight months waiting list to see them, she reckoned. But she also told me some useful stuff to do in the meantime which would mean I wouldn’t have to mess around having more appointments than strictly necessary before getting the good stuff (assuming they see fit to give it me).

Whereas our good friend Giles Elrington at the National Migraine Clinic (very worth the name drop as it turns out) will give you botox, if he sees fit, whatever drugs you are taking, this clinic want you to be off as much as possible, and will even have you in to get you off your drugs, so assiduous are they.

remember giles? he does as he sees fit. you can tell, can’t you?

Now, it has never been suggested that I come off the preventative pain killer I take (naproxen) before, but this is what she says they would want me to do. She also said I should go up on my mood stabilizer – this being a project I had put on hold for the winter because every time I go up a dose I have at least a week of ricochet headaches before it settles down, possibly because it has an effect on hormones, so these may be ‘period migraines’ of sorts.

See, the migraine clinic is a private charity – hence the cost, and also hence I could get the botox treatment before it was available on the NHS in London. So what I am thinking is that if i get Dr Elrington to hit me up with the good shit for one more time then I can a) feel a bit better at a time of the year when I traditionally start going on the skids pain wise, and b) get a kick start on the drug withdrawl.

I have done drug withdrawl many times, and I do know not to go cold turkey, but even so, it’s a hard thing to do when not all your pain is rebound pain. Because, dur, you are going to have ALL THE PAIN and it will be bad and it will continue. So having something to leven that with will be most welcome and certainly worth £600.

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Addendum

Just as an aside, really, I have to tell you I was super nervous about seeing the neuro. Doctors have a lot of power, and I’d never met her before, so I was worried about that, and also because my brain isn’t what it might be, and because I have had this for so very long, I certainly can’t remember all the drugs I have tried. Anyway it was all fine, she was kind. And impressed with my name dropping (thanks, Giles, for being so very name droppable).

As we approached the hospital I started feeling a little hysterical. I started wanting to shout “TAKE MY BRAIN OUT!”

When we got to reception there was a man working there with a huge bulging forehead.

einstein’s brain. thank goodness someone had the foresight to steal it! (click through for more einstein’s brain goodness)

I found myself having a kind of tourettish urge to shout about his massive frontal lobe. My internal head shouting continued after that at various intervals (I never gave in to it – I have SUCH restraint) up to and including when the neuro lady said that under some circumstance or other I would have “less” headaches.

Gentle reader, it took all my strength not to shout “FEWER”.

holiday time! botox for migraine, and waffling on about the olympics – and a poll! many good things!

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we’re going to bri-ghton! we’re going to bri-ghton!

we were going to wales, but i got an appointment at the migraine clinic bang in the middle of our proposed travelly time, and had to cancel. wales is too far to go for less than a week. brighton, on the other hand, isn’t. in m’previous post i linked to a little tumblr i made with the purpose of fishing for holiday swapsies. i didn’t get the swap i constructed the thing for, but it occurred to me to show it around to brighton peeps, and one such friend actually happened to need a dog/house sitter for the latter half of this very week.

so excited. the doggy we are visiting is the one who inspired me to adopt a staffie. she is an old girl now, but i’ve known her since she was a pup, and she’s a lovely girl.

do not fear. THERE WILL BE PHOTOS. oh yes.

i don’t know if we will see everyone this time round, but i do know there will be group dog walks. that’s it. i don’t know anything else.

we will go look at the sea, too. but i don’t know the summer dog on beach rules, so we will have to find out about all that.

and, “hollybags”? don’t ask me. i think it was one of the kirsties who coined it. or at least, passed it on to me. for safekeeping, like.

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the national migraine centre is a private charity, not part of the NHS. it’s been run by a famous Dr, Anne MacGregor, who has dedicated herself to researching the part hormones play in migraine. when i went to see my neuro at whitechapel last year, for what i assumed would be the last time because i was moving out of the borough it turned out that he was moving on, too. Dr MacGregor is off to concentrate on research at barts, and he, Dr Giles Elrington, is taking over at the migraine clinic. I’d stopped going there because being a chronic, paying every visit wasn’t an option. He told me he would waive the fee for me, though.

giles. he’s so posh he really does wear a bow tie.

the suggested donation is currently £100. so, not inconsiderable. what i will be happy to pay for, though, is the botox treatment. this is his hobby horse. it’s been approved by NICE (national institute for clinical excellence – our FDA) but the NHS trusts all have to decide whether to bank roll it, and they are taking their sweet time.

at £600 a time it’s not cheap (which i don’t really understand, since botox is actually not expensive in itself) but if you are a chronic like me then neither is almost daily use of triptans, and in a more general way, an inability to do a day’s work. i think i cost the state a good deal more than £600 a quarter.

IF he can whip out the needle on tuesday i will be very pleased. i have had botox before and it worked really well. apparently you need to give it a couple of goes to see if it’s not just a placebo effect, but it could become cost effective if it meant i could work. what i would work at is a whole other question. of course, i have the fibro to contend with as well. my attempt to swim myself well not only sparked more migraines than i could cope with, but also quite a bit of IBS related flare ups. and then there was the fatigue… so it’s not a cut and dried situation, but bloody hell, i am sick and tired of being sick and tired, so lets give it a whirl.

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i’m slightly weeing myself with excitement over what possible escapades protesters might get up to during the olympics. people are being arrested for the slightest thing at the moment, though, so they’ll have to be smart. i’ve written a whole waffle about it, but it’s not been posted yet.

and, speaking of waffling, you may note that i am writing like a normal person over there. i felt it was the way to go. trouble is, now i am all sixes and sevens about capitalization. what do YOU think?