Botox for Migraines - The Results, part 2

It's been a few months since my first experience at Botox and I tantalisingly left you with news of how, a week after the treatment, I got extreme pain in my shoulders which then gradually died down.  You can read the whole story here: http://anothermigraine.blogspot.co.uk/2012/12/botox-for-migraines-results-part-1.html

So what happened next?  The answer is, sadly, not a lot.  Migraines as usual.  In fact, the frequency continues to slowly get worse as the months go by.  Everybody keeps on attributing this to the fact that I had the Botox, but I know that this isn't true.  The following shows my migraine pattern for the last year and a bit.  I apologise in advance as I am a bit of a statistics freak so try to stay with me!  But this proves that the Botox didn't really make much difference.

The top line is total headache days.  For the first few months this bounced between 15 and 20 per month.  For the next eight months I got between 15 and 25 days of pain per month.  Then, in August we broke through the 25 day barrier and stopped going below 20 days.  From September onwards, you can see a steady increase up to a peak of 28 days of pain (out of 30) in the middle of December.

The red line shows the number of migraine days and the green line shows the number of background headaches.  I had the Botox done at the end of November.  The only visible pattern after that point is that I got a lot more background headaches and not so many migraines (green line on top of red for a change), which although the number of total days pain remained high, at least it was something to keep hold of.

That is until the last 2 weeks when the migraines fought back.  I mark my pain based on a simple 1, 2, 3 scale.  1 is a background headache, 2 is a migraine and 3 is an ouch really bad migraine.  Thankfully I don't get many ooo make it go away now migraines.  But last week I got one.  About time really as my last one was back in July.  But then this week I get another.  And not any ordinary one.  This was a classic three day migraine.  The pain was immense.  I could hardly walk and goodness only knows how I managed to sleep.  None of my normal medication touched it so by day two the docs prescribed extra strong co-codamol and sickness tablets.  I rarely feel sick with migraines but wow, I got the whole hog for this one.  Thankfully the co-codamol took the edge off the pain a little.  I spent most of day 2 in bed, but by yesterday I managed to get into work and the pain eventually disappeared by midday.

Why is it that the pain can be so intense and yet disappear so quickly?

Why is it that the doctors have made an appointment for my next Botox treatment on Saturday afternoon.  Being Jewish I can't make this and they don't have any other slots as apparently "it is a specialist clinic".  So I wait to see if I will be able to have a second treatment.  If not.... oh don't worry, there are plenty more alternative's to be had if you look hard enough and I will let you all know how they go once I have tried them out for myself.

(Sadly, due to the amount of false & spam comments, as of March 2015 I am not allowing any more comments to be placed against this single post.  Feel free to contact me if you have any genuine comments to make).

Botox for Chronic Migraine Sufferers

Maggie is promoting this cause and I think that it is worth a look for all people with migraines or even if you just believe in the cause.

http://www.campaignengineroom.org.uk/botox-for-chronic-migraine-sufferers

Botox for Migraines - The Results, part 1

I had Botox treatment for my migraines nearly 3 weeks ago (http://anothermigraine.blogspot.co.uk/2012/11/botox-for-migraines-part-2.html) and it's time to report back on how it went.

So let's start from where we left off.  At the end of my last post I reported that I had a migraine threatening to come out.  Well the bad news is that it did turn into a full migraine.  The good news is that following a triptan it disappeared within 15 minutes.  This is much better than the normal reaction I get to taking triptans. Normally the migraine will get worse and then about an hour later I realise that it is fading and has gone.  As I was told that the effects of the Botox could take up to 2 weeks to fully work, I saw this as a really good sign that it was working.

Day two was clear which was also a good sign.  At that point I was getting 25 days of pain ever 30 with 15 of them being migraines and the others just being background pain.  I was long overdue a clear day by this point as I had just gone 11 days straight with either background or migraine, so this wasn't conclusive proof that the Botox had worked, but certainly another good sign.

Day three and a migraine was forcing it's way out, but it disappeared before it really started.  Day four was another clear day so we are down to 23 days of pain and 13 migraine in the last 30.  This is starting to look good.  I was getting a little excited that this might actually work.  I mean, I had only been waiting for the treatment for the last 14 months.

Day five and another migraine trying to get out only this time it succeeds.  Strangely it is on my left side again, just like the last one.  This is unusual as most of my migs are on the right.  I hate left sided ones as I am not used to dealing with the pain on that side.  It's funny how your body adjusts to cope with situations.  The other strange this about this migraine is that it was all in my shoulders and not so much in my head.  My wife offered to massage them as this often helps to relieve the pain.  But, the second she touched my shoulders, I hit the roof!  Wow they was sensitive.  A sort of buzzing, bruised pain.

The good news was the the triptan got rid of it really quickly again.  The bad news was that the next day  I got another really sensitive shoulder pain, but not quite migraine.  A nurofen took the pain away which made a nice change as usually, normal over the counter medications never touch my migraines, so again, this wasn't such a bad development.

That is until the migraines didn't stop coming.  The shoulder pain thankfully died down, but was replaced with my normal migraines.  Let's fast forward 2 weeks to today and I am up to 28 days of pain out of 30 with 14 being migraines.  Interesting that the migraines are slightly down and it is the background pain that is up.  The only thankful thing is that my migraines don't incapacitate me.  I am still able to function, most of the time, if a little groggier and so I have been told, at time a little more grumpy.  But at least I don't have to lie in a darkened room with a flannel over my head, and I have heard of those who do!

I put a call in to the doctor last week and his secretary told me that he was away until today so she will speak to him to see if there is anything that he can suggest that might help until I can have the treatment again.  Oh yes dear reader, I am not giving up that easily.  Attempt one may have dismally failed, but the next time they can up the dose and I am going in armed with more information.  I can't have the next treatment for 3 months after the first, so I have until the end of February to wait, so stay tuned until then and I will update you...

(Sadly, due to the amount of false & spam comments, as of March 2015 I am not allowing any more comments to be placed against this single post.  Feel free to contact me if you have any genuine comments to make).

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.