Botox is Magic

So I haven't made a blog post in a while, largely because the NaNoWriMo challenge was so exhausting.  I'll be doing a catch-up of my Month in Review posts soon which I haven't done for a while now but in the meantime, my big news is about Botox.

I had my usual appointment with the specialist nurse at the Headache Clinic at York Hospital at the end of November.  We discussed my medications and as things had been pretty bad for the 3 or 4 months prior to it, we both felt something needed to be changed as the medications I was on just weren't having enough of an effect.

She told me how they were going to be opening a botox for migraines clinic sometime in the first quarter of 2014 and that I should get myself referred for it then, which was GREAT news as I thought I was going to have to take myself down to London to The National Migraine Centre to be able to get the botox.

In the meantime, we decided I would start trying the last of the daily preventatives which I haven't tried yet, topiramate.  That's actually an anti-epilepsy drug and the reason it has been last on my list to try is because the side effects can be pretty harsh.

Excitingly though, I got a call from my specialist nurse the following day asking if I would be willing to be one of the two people they need to do the Botox on during their training day to be able to be certified to open the clinic.  I leapt at the chance!

So I didn't change my daily preventative medications at all, as we want to keep everything else as stable as possible to be able to fully gauge any effect of the Botox.

For Botox for migraines, it involves having a total of 31 injectons in the forehead, side of the head, back of the head and down the neck.

As someone who is terrified of needles and had to be taken out of class early when it was injection day at school and with all the hissy fits I'd throw about it I'd be back in class after everyone else was done, you can imagine this isn't something I was particularly looking forward to.  As any chronic migraineur will say though, I'll try anything if there's a chance it could help.

Each injection hurt, some sites more than others.  I thought I'd find that easier since I suffer pain on a daily basis but it was a sharp pain which is such a different kind of pain to my daily headache and my migraines.  They stopped hurting almost as soon as the needle was out though, and it was also strange to have pain go away so quickly.

I had a really bad headache for the following few days but then it was like a miracle.  I had over 3 weeks without a migraine!  I still had daily headache but such a long gap between migraines is just so unprecedented for me!

So it was just before Christmas when migraine arrived and when it did, it wasn't as bad as my migraines usually are.  My migraines normally come in at a 7 or 8 out of 10 on the pain scale, but this one was a 6.

Unfortunately, it was about this time that my recurring eye problem came back, and with the blind spots in my vision in one eye, comes exacerbated migraines.  So the migraine fairy came to visit again as soon as Christmas Day (at 3am having been woken by the pain, I was literally swearing at Santa!).  They came thick and fast then until I got myself an urgent referral appointment at the hospital and got some steroids.

Since getting onto the steroids, I got another fabulous (almost) 3 weeks between migraines, at which point I declared that Botox is Magic!

Sadly now, the Botox is wearing off.  I can tell this by the increased frequency of the migraines of course, but also by the fact the middle part of my forehead is getting some movement back!

I'm due for my second round of Botox on 7th March and I'm hoping to get as good results on the second round as I had on the first round and hopefully not obscured by anything like my eye problem then as well!  I'll also be asking about coming off Amitriptyline as a preventative since I haven't really felt any improvement from being on it and it leaves me so exhausted all the time that I think, if anything, it's making me worse.

The frustrating thing though, is that if the Botox works really well and after the second round I no longer fit into the arbitrary definition of 'chronic', then I can't get it again on the NHS as you need to be 'chronic' to classify to get it.  So if it works, I can't have any more, until I deteriorate to 'chronic' again, but if it doesn't work that well and I'm still 'chronic' I can have more!  Crazy.
I looked into paying to get it done at the National Migraine Centre in London but at over £600 plus the travel to London, I just can't afford that.

I look forward to sharing how the second round of the Botox goes after I've had in and in the meantime I have to ride out the Botox wearing off and the migraines getting worse between now and then!

MHAM Day 10 - Ocean's Eleven

Today's prompt is about the team behind my migraine treatment, my very own Ocean's Eleven.

Sadly I don't actually have a team of eleven behind me, not even half of that.

Things are much improved now than when I lived in Norwich at least.  When my migraines first started, the GP surgery I was a member of was terrible at trying to help me; the only things they did well in my opinion, was diagnosing it as migraines pretty quickly.  It was a combination of the terrible support I was getting from them combined with things worsening at work than made the migraines become as bad as they have.

Thankfully, when I moved to York two years ago, my GP here has been marvelous!  He listens to me, he seems to genuinely care, he researches and he knew the best thing to do almost straight away was to refer me to the headache clinic in the neurology department at the local hospital.  I see him an awful lot still, some of those times have been in tears, actually a lot of those times have.  Many of the visits have been to get sick notes for work which meant having to be there with a migraine and in a situation where I knew my work were very upset with me, and he always made things seem much better by the time I left and never ever once quibbled that days and days long migraines make one unfit for work.

So he's been my medical rock for two years now - Dr Fair at the Jorvik Medical Practice if you're interested.

The headache clinic at York Hospital revolutionised the way I treat and manage my migraines.  It was there that I learnt about thresholds as oppose to triggers and there where I have received the much more expert advise on what treatments to try at what levels and what difference reactions meant for the next steps.  The specialist nurse there Jill Murphy is who I have seen on almost every visit and she is very good and as a sufferer herself she really understands.

Sadly, I'm less impressed with the neurologists themselves at the hospital though.  I'm sure they're very good and they know a lot, but I saw Dr Fontebasso there on my very first visit where she took a full history and discussed what I was experiencing a lot and she therefore diagnosed migraine.  I then have never seen her again.
The hospital frustratingly discharged me in the autumn (I shouldn't have let them but I'm very unassertive with people who are experts in things) so after I got re-referred I saw another neurologist on my first visit back; I don't even know what her name was.  Her appointments were running over half an hour late so my appointment which should have been thirty minutes long was only fifteen minutes long and I didn't get a chance to discuss anything I wanted to at all with her and I know now that I will be only allowed to see Jill, the specialist nurse, again with each visit.  As good as Jill is, I'd like to be able to speak to the neurologists as well.

I suppose that you could probably count the clinical psychologist I was referred to who I saw just over a year ago in the team as well, but as I only saw her twice and all she did for me was tell me to leave my job, which I did do, then I don't really include her in the team.
Equally, the nice chap who gave me a course of acupuncture at the hospital as well, it didn't help me at all so I don't really include him either.

The prompt also asks us about what essential roles still need to be filled.  This is actually a difficult one I think.  I really would appreciate being able to speak to a neurologist but since the hospital doesn't seem to think that's essential then is it? Am I just thinking I need to see one because I'm not doing?
I also think I would probably benefit from a specialist masseuse but I'm planning on asking Jill if she knows of anyone who specialises in massages to help migraines and headaches.
I daresay I would probably also so well to see a therapist too; stress plays a big part in the triggering of my migraines and like all migraine sufferers, especially chronic migraines sufferers, I'm more likely than others to suffer from depression and although I haven't felt that I'm depressed I've had a few friends say that there are signs that I am, so a therapist would probably help.  I can't afford therapy sessions so I haven't really explored that avenue when I would likely benefit from doing so.

Does anyone else have an essential migraine treatment team member that I don't even realise I'm lacking?

MHAM Day 12 - The Box: You are the experiment

Today's prompt is about times I've felt like a lab rat while I've been getting treated for my migraines.

Given I haven't really had much don to me then I haven't felt much like a lab rat to be honest.

The hardest thing when it comes to treating migraines is that everyone's migraines are different and everyone reacts differently to the different treatments there are for migraines.

There are eight different triptans available, which are the drugs which have been created to abort migraine attacks when they start.  Each migraineur reacts different to each of these triptans and it's a process of elimination to find one which works for you (though there are the unlucky ones who have tried them all and none of them work for them).
It isn't as simple as trying one with a migraine and if it doesn't abort it, move onto the next though.  You have to try each one for a decent period of time, for a good number of migraine attacks, to be able to gauge whether or not it's working for you.  And then when I found ones that worked better than the previous ones, but still didn't abort the migraines, I was reluctant to try other ones in case they were worse, I didn't want to suffer more pain than I absolutely had to, but the idea that one of them could actually abort the migraines was such a tantalising prospect I did of course keep trying different ones like a lab rat.

It feels similar with the preventatives as well but with the results of that being even less tangible than with the triptans, gauging whether a decline in migraines is due to a new preventative or an increased dose of a preventative or whether it's because I wasn't trying to do too much at the moment, if work isn't stressful at the moment, if I've been sleeping better, etc etc.  All the many things that contribute to my migraine frequency have to try to be seperated to try to gauge how effective a preventative treatment is being.  I take so many tablets a day and I am constantly assessing my reaction to everything every single day.  Sometimes I wish I was a lab rat and didn't have to try and self-diagnose my treatment all the time, that I could just think about the now and not about the whole, not about the migraines which just seems to consume so much of my thoughts and my life.


June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com. 

Photo by globalhermit on Flickr