Monday, 30 January 2012

Botox for Migraines part 1

Following on from a recommendation from a Migraine Action desk based assessment at work (contact them for more information as it was really interesting and I learned a lot).  So, botulinum toxin injections huh?  What's that all about.  To start with they are more commonly knows as Botox.  Before the appointment I started searching the net for information on Botox for migraines and there is a lot of it out there, so I won't repeat it all here (hey, I'm not going to do all of the donkey work for you!)

Oh okay then, if you insist, I will give you a brief, non medical so sorry about any little inaccuracies, summary.  You get about 31 injections around the head, so it's not for the fainthearted.  Botox famously gets rid of wrinkles by relaxing muscles.  People who were having Botox for cosmetic purposes found that they were not only looking smoother, but they weren't getting as many migraines.  An opportunity lay in waiting for the manufacturers and a few proper medical trials later (nearly 70% of those treated with Botox had a 50% reduction in the number of migraines compared with before the trial) hey presto here we have a miracle cure.  Ok, so it only lasts for between 3 to 6 months, but that sounds good enough for me.

Back in October 2011 I had a very positive consultation with my local NHS specialist.  He said that based on what I had told him I was an ideal candidate to qualify for Botox on the NHS.  You have to have at least 15 chronic headaches per month with at least 8 of them being a migraine.  I hadn't kept a diary for years so wasn't sure whether I would qualify for that.  But, he was confident that I would and said "if you are close, then between you me and these four walls, just tweak the figures a little." 
Um, "tweak?" Is that ethical, but then do I want the treatment and what do I care as long as I get the treatment!  I was told to come back again in 3 months with the diary by which time he was hoping to have full funding.

So off I went and immediately set up a simple diary.  0 for no headache, 1 for chronic background headache, 2 for migraine and 3 for severe migraine.  Now I know that this is all relative, but I thankfully don't get many severe migraines and I didn't need to separate them for the purposes of this diary, but thought it would be interesting for my own purposes.

To my surprise the diary didn't need any tweaking of any kind.  Right from the start it showed a pattern that has continued until today.  I get 19 days per month with chronic background pain of which 9 of them are migraines.  So I easily qualify for the treatment as was eager to attend my second appointment which, as it happens, was last week.  I had got it into my mind that at the very least, I would get a date for the injections and he might even do the injections there and then (for some reason I had got it in my head that there were only 8 injections and not over 30).  This is the first treatment that I have genuinely been excited about for a long time.  Sadly, the appointment was a little quicker than I was hoping for.  I showed him my diary with great pride; went over my medication history again; and he told me that he still hadn't received funding.  He gave me an open appointment, which is something I suppose, and said that I was to phone in 2 months time to see if funding had been received yet.

Disappointment.  Dejection.  Thesaurus, find me some more words beginning with "d"... ah thank you, depressed, demoralized, despondent, dimple, um sorry what?...

So I go back to Migraine Action and low and behold, there is a news article ( stating that we are all waiting for NICE (National Institute of Clinical Excellence) to approve the treatment.  Hey, I'm not going to tell you about it here so go read the article already.   We can wait....

Anyhoo, that's pretty much where we are.  I contacted some local cosmetic surgeries who dithered and spluttered before telling me that of course I could have Botox and for the sum of £400 for 1 treatment it might even cure my migraines for me as well.  By the way, don't try this at home folks.  For migraine cures always use a proper medically trained practitioner.  I have put my name down for the Allagron Botox trial which seems to have been going on for ages but haven't hear back yet and have also put my name down for an alternative trial (more on that in another blog if it comes off).

I hear through the grapevine (I know somebody who knows somebody at NICE) that NICE should be publishing guidance by the end of May, but you didn't hear that from me!

Until then, I guess that we all have to wait a little longer.