MRI at last but Neurologist Gives Up

Let's have a recap... I am 44 year old man based in the UK who has been having migs for about 30 years but only diagnosed for the last 9 years.  I get 20 to 25 headaches every month of which about 10-15 are migs.  Over the years I have tried many things to try and prevent my migs and most of them you can read about in the pages of this blog... There were preventative meds, which mostly made me feel awful or didn't touch the migs at all.  I have tried botox, occipital nerve block, physio, chiropractor, massage, acupuncture, allergy tests and diet changes and a hand full of alternative meds such as Q10, feverfew, magnesium sprays etc.  None of them have touched my migs.  I have searched high and low for triggers and the only one that I have found is the cold wind on the back of my neck.  I know of no others.  I don't get aura and thankfully most migs go within a day.  I take triptans, paramol, midrid and a cup of coffee to cure my migs once I get them.  Oh, not all at the same time!  I keep a diary to make sure that I don't overdose on any one of them.

Last week I had my regular 3 monthly appointment with my neurologist and he told me that he had run out of ideas, and that he wasn't going to make any more appointments to see me.  That was a real jaw dropping moment.  He had nothing for me.  No more meds, no more injections (not that I really wanted either but it would have been nice to have been asked). 

He said "Carry on researching and if anything else comes on the market, ask your doctor to refer back to him again."  To be honest he has never been the most proactive of specialists.  Our appointments tended to be so quick that I could park, register at the reception, see him and get out again, still within the 20 minute drop off time for the car park.  So the good news is that I didn't have to pay any car
parking fees at the hospital.  If I suggested something to him, and if it was available on the NHS then he would approve it.  But for now it seems that I have reached the end of the line.  No more options are available to me, nothing, zilch, zippo.  I felt empty and dejected.  He did at least try to look sorry for the inconvenience, but fell a little short of the mark.

So.... um.  No actually that's it.  I tried getting referred to another specialist a few years ago and all they could offer was what I already had tried.

"But what about that exciting new neurologist that you mentioned at the end of your last blog?" I hear you all cry.  You have read my previous blog haven't you?  Haven't you?  It's ok, we can wait...

Well he was a fabulous guy.  It made a real change to be seen by someone who took some time to think, and to ask, and to look and to touch.  He booked me in for an MRI scan, which he was amazed had never been suggested to me before.  He also suggested physiotherapy as he was sure that at the very least it would alleviate the symptoms.  The MRI found nothing conclusive.  There is always stuff that you can see on an MRI scan and mine was no different, but as nobody seemed too worried by the results, neither did I.  The physio appointment finally came through, three months later.  He gave me some neck stretching exercises to do.  Half of them I do already, I mean who doesn't stretch their neck from side to side when you have a mig?  I will give them a go, but as the appointment was only a week ago it is too early to see if they make a difference yet.

Other than that dear reader, I really am not sure what to do.  I will continue to search for the elusive cure and I will continue to post my findings here when I find them

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!