Botox for Migraines Part 2

IT has been a while since my last post, sadly because there hasn't been a lot to update you on...  Until now.  Back in January I reported that I had been accepted for the Botox treatment and that they were waiting on approval.  You can read all about it here... http://anothermigraine.blogspot.co.uk/2012/01/botox-for-migraines-part-1.html

Botox was finally approved by NICE on 27th June this year.  The clock started to tick and local health authorities (more commonly known as Primary Care Trusts (PCT)) had three months to arrange for funding to make the treatment available to the general public.  So that would be the end of September then?  Well yes it would!  So why am I only blogging about this in November?  No, it's not because I am lazy and didn't get around to it.  It's because... well let me tell you why.

September came and went as did a number of calls to the hospital.  Still no funding.  They were waiting as well.  Then came an email from Migraine Trust asking for people who have not yet received an appointment. If not, then they run an advocacy service who you should contact to ask for help.  So I gave them a ring.  And they pointed out that the PCT has a legal obligation to provide this service by the end of September.  The advocacy service contacted my local PCT under the freedom of information act to ask why funding had not yet been provided.

Call me a cynic, but two weeks later approval was given.  Two weeks after that, the appointment letter dropped on my doorstep.  Shock horror and surprise!  Appointments with the NHS are normally for months in advance.  This one was for next Tuesday.  A week away.  Seven days!  Wow.  The day before, curiosity got the better of me and I looked on-line to see how the process works.
"Prepare myself for it," I thought.  I forgot that I have a phobia of needles.  My legs almost went from beneath me when the on-line doctor said,
"This one will crunch a bit".  Eeek!!!

So Tuesday came... and stayed... and dragged on... then I got a migraine which wouldn't go... and then it was 7pm and I was in the waiting room completing a brief questionnaire.  Five minutes later I was called in to see the doctor.  I was the first one on the list for the official treatment.  The doctor has been trialling it for a year on 60 other patients, so I wasn't the first person he had treated, which stopped me bolting for the door there and then.  It took the doctor longer to draw the Botox into the needles than it did to inject it into my head.

I know, I know.  This is the bit that you have been waiting for the whole time.  The info on how I got there is all well and good, but how did it go?  What did it feel like?  And more importantly, has it worked yet?

If you are feeling squeamish, then probably best miss out the next paragraph.  You have been warned!

Ok, here we go.  It hurt.  Sorry to burst any bubbles, but it hurt.  The needles are really thin, so think diabetic needles rather than blood giving needles.  They are only put in for a split second each, after all I got thirty injection in about four minutes.  But they stung.  Some more than others, but they all stung.  Some of them bled as well.  The doctor mopped most of the blood up (ok, I exaggerate slightly for dramatic effect), but he did miss one on the side of my head and the dried circle of blood made it look a little macabre by the time I got home.  That wasn't the worst of it.  Do you remember the on-line doctors comments of a few paragraphs ago (come on, do try to keep up) and that I had a migraine at the time?  When injecting on my migraine side (...double squeamish alert...) the needle crunched through the gristle each time it was pushed in.  It didn't do it on the left of my head, just the right.  That meant that I could hear as well as feel the needle as it went in crunch and out... in crunch and out... in crunch and out.  I think you get the picture now.

I have to admit that when he finished, with a flourish of four injections in my upper back and shoulders, I was feeling a little queasy and more than a little faint.  The migraine didn't help, but the doctor noticed that the colour had somewhat drained from my face and escorted me to a nearby bed where I lay to recover.  But fear not dear reader as a few minutes and a cup of water later, I was back on my feet.  And that was it.  

"Thank's very much, I'll make an appointment for you in three months time." and I was out of the door and wandering, poor punctured soul and all, back to my car.

For the techy amongst you I received 150mg of Botox, 5mg at each injection site.  If that doesn't work then at my next appointment they will up it to 200mg.  If that doesn't work then it is not suited to me, but we're not focussing on that possibility right now.  If it does work then we can look at being more specific in where we inject to try and target the more common areas that my migraines strike and not inject so much elsewhere.  100mg works for some people so we would also explore reducing the dosage slightly.

I know, I know.  This is the bit that you have been waiting for the whole time.  Um, didn't you say that further up...?  I know, but this is the really important bit.  Have my wrinkles gone?

Sorry to disappoint you but I didn't really have that many to begin with so no.  Also, I only had the treatment yesterday and it can take up to two weeks for it to work (that's for diminished wrinkles and migraines).  What I can tell you is that by the time I got home, I could still feel the stinging in some of the injection sites, but not as bad and some of them felt a bit bruised.  But I was warned that this might be the case beforehand and had to sign that I agreed to it.

Today the stinging has completely gone and has been replaced by an itchy feeling on three of the sites.  Again, this was on the list of after effects.  It feels ever so slightly tight and numb on the sides of my head.  Oh and I have a migraine that is trying to come out.  But as yes hasn't managed it.  So who knows, maybe it has worked already.  Or is that asking for too much...?

Stand by for Botox Part 3 coming to all good screens near you soon where I will tell you whether it has actually worked or not.

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 (http://www.migraine.org.uk/index.php?sectionid=1586) 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.

Preventative number 2 - Allegron

At last I had got an appointment with a neurologist.  I was expecting the world.  A torrent of probing questions, brain scans, blood tests all resulting in a huge list of possible options.  After 5 minutes brief questioning and testing my reflexes he confirmed that I have migraines (so tell me something that I don't already know) and wrote a note for me to take to my doctors for some tablets.  I had disappointment written all over my face!  Was that it?  Where were the probes?  Where were all of the clever medical gadgets? Where was the excitement?  Where was the machine that goes "bing"?  Grasping at straws I asked what would we do if the tablets didn't work?  He advised my doctors to try two further preventatives which pretty much guarantees that I won't have to see him again for at least 4 1/2 months assuming that none of them work.

But let's not start on a negative note.  Allegron is actually an antidepressant, so if nothing else, I might still get the migraines, but I will be happy with them.  The dose for depression is 25mg three or four times a day.  So that's 75mg to 100mg per day.  I am starting on 10mg to be taken just at night and am increasing by 10mg per week until I get to 50mg so the does is well below the norm.

Let's have a look at how it went...

Week One.  10mg of Allegron
I had a cold which normally means that I don't get migraines anyway (see post migraines-vs-being-ill).  So getting only 1 migraine this week was nice but not a big surprise.  And I didn't feel overly happy so the antidepressant wasn't working at this low does either.

Week Two.  20mg of Allergron
I didn't get off to the best of starts as I forgot to take my first dose.  How do you remember to take tablets every day?  Any ideas are greatly received.  Anyhoo, two and a bit migraines this week.  The 2nd was a big one so no improvement yet.

Week Three.  30mg of Allergron
Sunday nights is a bad night for me as I forgot the first dose of 3 again.  I am still waiting for the migraines to subside and am hoping to be able to stop increasing the dose before I reach the 50mg maximum.  I really don't like taking tablets unless I have to.  As for the frequency of migraines, it was the same as week two.  Two migraines with the second one being a bad one.  I got it on the way to work which is unusual as normally I get them in the afternoon.  Not that I really want a change in that direction.  Interestingly I can feel the effects of the antidepressant kicking in a bit.  My mood is definitely lighter this week.  I can't imagine what I would feel like on the full dose if this small amount effects me in this way.  I would be floating!

Week 4.  40mg of Allegron
Ok, enough is enough.   By the end of the 4th week, the migraines are still there, just as before.  But, the intensity of them is far greater than I normally get.  The pain that I get is sharper than normal and whilst the triptans still get rid of them, until that happens, the pain is far worse.

So I call the doctors and ask them what happens next and they tell me to move onto drug number 3.  But that's a story for another blog...

Oh, and I have no idea what the picture actually depicts, but I thought it was kind of kitsch.

Migraines v's being ill

There is a constant search for the elusive trigger for your migraines.  What causes them, what makes them worse and more importantly, what makes them better.

It was with some surprise that I stumbled upon this preventative, if preventative is the right word for it.  I've not heard of anyone else reporting that and when talking to some people from Migraine Action, they raised their eyebrows in surprised interest when I told them.  The problem is that it's  not really a preventative which I would advise anybody to take.  I mean, it works, but it's not something that you can get from your doctors.  It's called being ill.  No really, stay with me here because this really happens.  I rarely get a migraine when I am not well.  Just to re-cap, my migraines normally appear every 2 to 3 days.  Here are 3 examples of what I mean:

1-  During the recent round of colds, I had quite a bad cough and runny nose that lasted for about 5 weeks (ok, so stop the man-flu comments.  I can hear you out there.  As it happened, my darling wife kept on complaining that I didn't go to the doctors quickly enough and that I needed to accept that I really wasn't well rather than trying to push through.  You just can't win sometimes!)  Anyhoo, rant over.  During that time, I didn't get a single migraine.  The first one hit about 4 weeks into the cold.  It was at that point that I knew that the cold was going.  Strange but true huh?  But, it doesn't end there.  

2- I have a habit of cricking my back by pulling a muscle, or trapping a nerve.  Whilst the pain of the back and the immobility of my shoulder remains, the migraines stay away.  

3- I have recently been diagnosed with Arthritis in my foot.  I am still not sure which type it is other than R negative.  The foot pain comes and goes, and even this makes my migraines disappear.  That is, until the pain in the foot has been around for a while at which point the migraines make an unwelcome comeback.

 

To be honest, I think that I prefer the migraines because they are, most of the time, treatable.  I really wouldn't want to go through 2 weeks of neck pain just to avoid having a mig.  But, the illness and the lack of migraines has to be connected somehow?  Right?  It can't be my body just being kind to me by not wanting to subject itself to too much pain in one go?  Clearly not.  But what the link is, I have no idea.  I would be interested in hearing your thoughts on this.  Do you find that migraines lesson when you are ill?  Do you have a theory as to why?  Let me know.

Miracle Migraine Cure

Over the years the frequency of my migraines has slowly been increasing. Now I get two to three migraines per week.  I have been taking triptans whenever I feel the early symptoms. I have worked my way through them, as you do if you are a sufferer, as nobody knows which one will work for you until you try it. I use Maxalt (Rizatriptan). They work by immediately making the migraine worse, then an hour later it is gone. For those lucky people who have never had a migraine, let me tell you what happens if I don't treat it. They can last from 3 hours to, wait for it, 3 long painful days.

If the migraine starts in my neck then I have found that Syndol is a slightly cheaper way to remove the symptoms. The problem with that is that I am often left with a fuzzy feeling for the rest of the day. Now whilst this can sometimes be quite a nice happy haze, it isn't ideal, especially if my boss is trying to tell me something important and I am sitting there grinning at her.

Then disaster struck.  I got a really bad migraine at work and had left my triptans at home.  To my horror I realised that I was out of Syndol. Nothing else has ever touched them, but in the vein hope that this time might be different from all of the rest, I took 2 panadol. Unsurprisingly, they didn't even dent the pain. So what has Syndol got in that panadol doesn't.  One of the active ingredients is caffeine.  I had recently read that the reason caffeine is added to drugs is to speed up the absorption process.  I don't normally drink coffee. In fact I don't often have anything with caffeine in it. But I was a desperate man with a pain in the head. So out came the mug, in went the granules and in went the water, just off boiling.  Old hotel management habits die hard as coffee should not be made with boiling water. Tea is made with boiling water and for coffee the water should be just off boiling.

I sipped the strong black drug (no milk for me) and as I expected... Nothing! By the time I finished the mug the migraine was still th... Um actually, hold on a minute. I feel my head in disbelief.  The pain has to be in there somewhere.  But shock, it has gone!

Let's not get too excited here. Sometimes they do just go after a short time and this was probably one of them. So the next time I got a migraine I thought, why not! So I had another mug of coffee.

First sip.... Nothing. The pain was still there.
Second sip... Nope, it must have been a coincidence.
Half way through... Still got the pain. Oh well.
Almost finished... Hold on a minute, the pain is going.
Finished... So had the migraine!

Extended trials have shown (that is me grabbing a cuppa each time I get a mig) that a cup of coffee will stop about 3 out of 4 migraines in their tracks.  I have tested it a number of times since. Every time I feel the migraine, even the very early signs of one, I pop on the kettle and brew up. By the time I have finished the mug the pain has gone. The amazing thing is that there are no side affects other than feeling really good!!!

I have looked into this in a bit more detail and apparently this is not unknown for coffee to help migraine sufferers. Why am I always the last to find out about these things? Apparently the caffeine makes the blood vessels dilate (or something like that) which is similar to what a triptan does. You have to be careful not to drink too much coffee of else you will start to depend on it and it might ever cause you to get more migs. But one cup every two days is fine (and yes I have checked this with my doctor).

So there you have it. A migraine cure in a mug. Cheap and available almost everywhere. Let me know if you suffer and how you cure your headaches.

Update...  Sadly the frequency of which a mug of coffee works has dropped a bit over the last few months (I originally drafted this blog a while back).  I now find that a cup of coffee will cure perhapse 1 in 3 migraines and even then, only when taken with another drug.  But you know what?  I don't care.  Anything that stops the pain is good.  The more options and cures that work the better!

Overcooked Physiotherapy

Part on of my journey into the world of physiotherapy can be found here http://anothermigraine.blogspot/physiotherapy-and-migraines.

There was a fair amount of trepidation as appointment two drew nearer.  The combination of the induced migraine and the neck pain from from my first appointment was still sharp in my mind.  To make me less inclined to attend, the physio told me that it would get worse before it got better.  I took a deep breath and began to ascend the staircase to the first floor.  We got straight down to business.  I undid the top few buttons of my shirt and lay face down on the bed.  The physio started to apply the pressure to my neck only this time she had a much better idea where the sweet spot what and it wasn't long before the pain meter was flickering in the red and I could see stars in front of my eyes.  The pain really was quite excruciating and only just bearable.  If the pain got any worse then I would have had to have stopped the treatment.  Apparently she was inflicting a 5.5 pain rating on me out of 6.  As the pain increased, the involuntary giggles started and my leg decided to get in on the act by flipping up in the air.  The more the pain, the higher my leg and the louder I laughed.  I am sure that the physio used this as an indicator as to when the pain subsided.  Leg touches down on the bed equals no more pain.  After some analysis and a glass of water, I was sent on my way for another week.   

The following week the combination of the pain and being face down for so long gave me a nose bleed.  A common problem that I have when I am run down and quite a problem when I am meant to lay face down for so long, so that week was cut a little short.  The following weeks came and went and so did the pain.  After six sessions we had come to the following conclusions:
1- I had a slippery C2.  Nobody had ever told me that before.  Apparently when applying pressure to one side of the C2 it slipped all the way to the other side rather than seating itself in the middle where it should be.
2- The treatment had not worked.  Not only that, but the frequency of my migraines had got worse which was quite a disaster.

Dr Dean Watson from Australia championed this trial and apparently it works for a lot of people.  So, as always, don't let my experience put you off if you want to try it for yourself!

But, this isn't the end of the story.  The physio (who shall remain nameless) took my increased migraines very seriously and personally and after a few weeks research and a number of conversations with Dr Watson, she offered me the chance for her to attempt to reverse the damage.  She had, in her own words, "over cooked it" and had applied too much pressure to my neck.  She was very upset about what she had done, but was confident that it was reversible.

So, should I risk it?  Would it get better, or could I end up with one long permanent migraine.  As I am the trusting type I decided to go for it, even though it meant more weeks of pain.  So I got six more weeks of free physio until we reached the point where no more progress was being made and I was pretty much back to where we started 5 long months ago with 1 to 2 migraines per week.

So was it worth it?  There are always risks when taking part in a trial.  That's why they are a trial!  I came out of it no better and no worse off which is a shame.  But I still think that it was worth it and I would love to hear from anyone who has had a success with this or any other physio treatment.

Physiotherapy and migraines

I now knew that I had migraines, which was a big plus, as I could now find some real help.  This lead me to discover the world of triptans which meant that most headaches lasted only an hour or so rather than up to 3 days.  But that wasn't enough for me.  I wanted more!  I was on a quest to discover a cure for my migraines.  There had got to be someone, somewhere, with a cure for migraines.  Feverish searching on-line and would you believe it? A new migraine research programme was being carried out just down the road from where I worked.  Perfect.

The research was based on physiotherapy to the upper neck.  The top of the neck is where your spine starts.  The disks in your spine, from the top down are called C1, C2, C3 etc (see diagram).  This research was based on applying specific pressure to one of the discs.  This pressure would induce the migraine and then remove it.  The idea was that it would reprogramme your body into not having migraines anymore.

I walked up the stairs behind an opticians to get to my appointment.  A nice lady introduced me to the concepts of the test and took down all of the details of my migraines.  Then we got down to business.  I lay face down on the bed looking at the floor through a nearly made to measure hole wondering why they couldn't put a picture on the floor for me to look at.  The physio started to size up my neck with her thumb and forefinger.  She pushed down with her thumb on my C1 and asked whether that hurt.  Nope, nothing.  A slight change in the direction of her thumb prompted the same lack of pain.

She then moved down to my C2 and as the pressure was applied, I felt some kind of pressure spread across my head.  "Is that your migraine" she asked eagerly.  It wasn't.  The pain was too dull and at the back of my head not the front right where I normally get them.  Her thumb moved slightly and the pain moved with it.  It was as if she was controlling the pain with a game controller (I was going to say joystick, but does that age me at all?).  This feeling was equally as unusual, but still not my migraine.  She took her thumb off to consider my neck in all of it's complexities and decided to change her angle of attack to the other side of the bed. 

YOW, that's the one!!!  That's my migraine.  "Good" she said and continued to apply the pressure.  "Tell me when the pain stops".  The pain didn't stop, but time did.  Not only had I a really bad migraine, but I had someone pushing with all of her might on the back of my neck.  The pain surged up from my neck, through my head, bounced around my eye socket, down my cheek and back down to my neck.  I got the pain induced giggles.  I couldn't help it, giggling away as she put me through this suffering.  The pain started to lesson after about 3 minutes and then a minute later it stopped and she removed her thumb and waved her hand around to get the blood to flow back into it.  Even though I lay there completely drained, I felt sorry for that thumb.  You try pushing down on somthing for 4 or 5 minutes and see how long it takes before your thumb starts to hurt.

As I lay there, face down and exhausted, the thought went through my head that I had another five weeks of this to go.  "That was just a preliminary check", the physio said.  "The pain might get worse next week, but it should then get harder and harder for me to find your migraine as the weeks progress until I can't find it anymore.  That means that the treatment has been a success and you shouldn't get migraines anymore."

I will tell you how it went and whether I coped in my next post.  Let me know if you have had a similar treatment, how it worked for you and whether you coped with it!