Friday 5 July 2013

You HAVE to see these Migraine Short Videos

Have you ever had problems explaining exactly what you are suffering when you get a migraine?  People just don't seem to get it.  Well the Migraine Trust commissioned a number of short videos to try and get the message across.  I highly recommend that you pop over to their youtube site to have a look as they are all completely excellent.

http://www.youtube.com/user/TheMigraineTrust?feature=watch

My personal favourite "youtube in pain" as I can really associate with the let down feeling at the end.

Monday 17 June 2013

Food Alergies, Migraines & 2 Ingredient Bread

Yes that's TWO ingredients to make a loaf of bread.  And YES it tastes, um, well we'll get to that bit later.  Let's start at the beginning.

After the woeful, pitiful let down of Botox and the inherent fear of taking any more preventatives, I decided to see if there was the vague possibility that food might be triggering my migraines.  Yes, yes, I know, "keep a food diary" you all cry!  That's all well and good for those of you who get the odd migraine every now and then, but when you get 3 or 4 per week, the foods and triggers kind of merge into each other and start to overlap and it gets really messy and...  Look, just take my work for it, it just doesn't plain work for me.

So another method is required.  I phoned my local helpful doctors (actually mine are quite helpful as long as I tell them what I want and they don't have to think too much themselves and it is legal, then they will let me try it).  I asked them about having some food allergy tests.  Um, ok this is where my previous comment falls down slightly as this is not something that they let me do.  They can offer individual tests for individual food types, but not a catch all solution.  I know that I am intolerant to lactose and that was though the docs - yay the docs apart from having to swallow a cup full of pure lactose and then suffer the consequences for the rest of the day.  My Rabbi has a wonderful way with words and referred to this as being "rather turbulent down there".  As it happens, and this is a little aside, I have found a wonder cure which lets me eat cheese again (ahh the joys) and it does really 100% work.  It's called Prolactazyme Forte and is available on-line.  Pop one tablet 10 minutes before consuming any type of lactose and you can gobble up as much as you like.

Anyhoo, I digress.  Searching on-line brings up a scary number of backyard tests.  You send all sorts of bodily parts for them to sample, like hair and stuff but it all sounded a bit strange to me.  So on a recommendation, I decided to try the York Test.  The ladies in my life (wife & mum) were not convinced until they saw the video on the website by Dr Hilary Jones.  I don't see it myself, but hey ho, it convinced them.

£300 (minus cashback) and 2 days later I got a pack through the post.  Prick your finger and let the blood gently soak into the long cotton bud thing.  Pop in an envelope and there you have it.  What could be simpler than that.  My son is type one diabetic so we are used to pricking fingers and have even tried it on ourselves.  He is a brave little warrior as it does sting a bit, but that's a whole long blog of it's own!  I got the pricker out, selected a finger at random, pushed it up against it, squeezed and %*&£!  OOOOUUUUCCCCHHHHH almost hit the ceiling in pain.  Wow that is harsh harsh harsh.  A little dance around the table holding the bottom of my finger because against the norm, I actually didn't want to stop the bleeding.  Aaaa ok... nope, just one more dance around the table to compose myself, much to my 11 year old daughters amusement, and relax.

The results....  My number one intolerance is yeast so I have to stay off that for 9 months.  Then a whole load of other stuff like sunflowers and milk and egg white (not yolk, I can have as much egg yolk as I want) and some other stuff as well which I won't bore you with here.  See their website for examples of what the form looks like.  It's quite interesting.

I have been on the diet for about 4 months now and can honestly say that it has been the biggest waste of time ever.  No difference to my stomach (which does get a little agitated at times (ok for agitated, read volcanic)) and no difference to my migraines.  Not sure what I was expecting to be honest.  Feeling more alert, less hungry, settled stomach, I dunno, you've got to get something for you money.

BUT, it wasn't all wasted.  Whilst searching for no yeast breads I discovered 2 ingredient bread.  Drum roll please.  Are you ready for the ingredients....

Self raising flour (2 1/2 cups) and pop (1 can).  That's it.  No really that is really it. Any fizzy drink will do but to be honest it doesn't make much difference which you use as they all tast the same.  Mix them together, whack them in a tin and shove in the over gas mark 180 for 45 minutes.  Ok it does taste a little bland, but it's a great base to add things.  My current favourite is honey and fresh ginger and it make a lovely teacake which is nice toasted with butter.  Try it out and let me know your favourite!

Friday 17 May 2013

Don't Panic!

Another month, another preventative. This time we are trying the anticonvulsant, Topiramate.  Ok, I have to start this post with a warning. I usually don't let on to exactly how things went until the end of the post. Tantalisingly stringing you all along until the very last paragraph. But this time I feel it only fair to warn you all, especially my mum, that this preventative didn't work.  Not only did it not work but the side effects were quite horrendous.  So mum, probably best not to read on.  No really, close the page down now...  I can wait...!

So here the story starts... Another month, another preventative. There is always a slight trepidation when taking new pills as to what the side effects you will encounter this time.  Tiredness always comes near the top.  Will these give you weight gain or weight loss (not that I have experienced either).  It only took two tablets before I found out and nearly two years later I am still living partly in fear of them.

Day 1 and the first tablet went down without any discernible effects.

Day 2 and tablet two.  I went to bed as usual, feeling quite rested. But then, at about 1:30am, something clicked in my brain.  It started like any other dream.  Then I got stuck at the end of a path and had to turn around, but there was no way out of the other path, or the one after that.  I like to think that I have a pretty good control over my mind, and I realised that this was a stoopid dream so I forced myself to think of something else.  But my mind started to speed up and nothing that I tried to focus on was right. The wrong path. The wrong decision. I didn't know how to correct it or make it stop.

Then with a start I jumped out of bed and stood in the corner of the room looking at the indentation my head had left in the pillow. 

"ok, ok, ok, ok" I repeated to myself, trying to gain control of my now racing mind.  I was calm on the outside but a jumbled mess on the inside.  I realised that something was wrong and that I should
be able to control it, but no thoughts were sticking as everything was happening so fast.  But only on the inside of my head.

Understandably my wife, at 1:30am, couldn't make out what was going on and suggested that I go downstairs and read for a bit.  So I did go downstairs but decided to turn on my laptop.  The calm outside of my mind then managed to squeeze a good idea passed the manic inside of my mind which was that I needed to speak to someone.  Realising that 1:30am wasn't the ideal time to be calling friends, I called the Samaritans.

I remember nothing of the conversation other than thanking the very calm and kind man at the end of it.  Each sentence I spoke to this wonderful man helped my mind to slowly calm down.  My wife heard the talking downstairs and realised that this was more than the normal kind of nightmare, came down to investigate further.  She hit the nail straight on the head by recognising that it was probably the tablets that had caused it.  Needless to say, I have never taken another Topiramate again and quickly disposed of them.

It took a good week until I was able to sleep without getting another panic attack in the small hours of the morning.  But each one was less intense and I worked out how to control my mind a little better to stop the intensity of them.  If one was coming on I would move the duvet from my feet and the cold feeling would deflect it away.  If that didn't work, then getting up and going to the toilet would reset my mind.  I continued to get them on an off for about a year, although by the end of the year they were pretty lacklustre.  I read in a book once that now the door has been opened, it can never again be shut.  One has to accept the issue and push it to the back of ones mind. 

Thankfully I have now done that and after the debacle of the botox have managed to pluck up the courage to try another tablet.  But more about that in another blog!

Tuesday 12 March 2013

Massage Giants and Migraines

There is a knock at the door and a 17 1/2 stone giant turns up with a Yorkshire accent declares; "I'm here to give you a massage".  In he trundled with a 21 year old folding bed (much stronger than the cheap ones they make nowadays he tells me) and a bag full of oils and gadgets (only a few of which he ever uses).

So why not.  I've tried so many other possible treatments to alleviate my migraine, why not massage.  This is why I booked him for a home visit.  If nothing else, at least I would feel relaxed afterwards.  So I undress my top half and get on this antiquated bed with a little trepidation but it did feel quite sturdy.  Then he prepared the hole.  You know the one.  It allows your head to point straight down so you don't have to bend your neck through a 45 degree angle and force your body to twist behind it.  Well my massage giant put a clean, but well used towel over the hole.  That's over it.  Not around it.  And told me to lie down.  So breathing wasn't quite as easy as perhaps it should be but I'll be ok.

As he grabs my right arm and pulls it sharply upwards (I am lying down by this point so imagine a half way arm lock) he starts to regale me with stories of his working life.  As a prison guard.  I can only imagine that he uses a similar technique on the inmates.  It wasn't the most pleasant massage position I have ever received.  Then he shoves his fingers underneath my now raised shoulder blade and thrusts them back and forth.

Um... permission to scream in pain???  Oh, ok permission denied.

But then the strangest thing happened.  Whatever muscle he has been pummelling must have decided that under the circumstances, after taking each view into consideration and looking at all of the options from each perspective, considering that there was a 17 1/2 stone giant attacking it, the best thing to do was probably to do what it was being asked to do and relax.  The pain under my shoulder blade disappeared.

Gently placing my arm by my side he decided to turn his attention to my neck.  This involved standing at the top of the bed, holding my head in both hands, and pulling.  Really pulling.  I mean really, really pulling.  You can stop now as my head might come off pulling.

By this point I was starting to get a little scared and decided to try and steer things to a conclusion.  As it happened, this was pretty much all he had to offer.  There was a bit more light pummelling on my back, but it felt like a bit of an afterthought and that was that.

As I was about to get up he grabbed me with both hands and lifted me, horizontally, off the bed, twisted me forwards to a dead vertical stop with my feet on the ground glad to be under my own control again.  He didn't want to put any undue strain on the legs of his bed.

The next day I got a migraine!  Yes I know that you are meant to give these things a while to start working... But would you have done???

Thursday 28 February 2013

To B or not to B

Apparently that is the question.  And the answer, for me, was not to B.  You see, I went to the neurologist yesterday for my second Botox treatment.  It took me ages to get psychologically prepared for the event as last time it hurt and this time I was getting a higher dose so anticipated it hurting more.

So I turn up and complete the progress forms listing days of headaches.  The neurologist took one look at it, glanced up at me, sighs slightly to himself and says:
"Sorry but I don't think that a second dose of Botox will do anything for you."  If you read back through the last 3 or 4 blog posts you will see that the Botox didn't do anything much for me the first time.  It is the neurologists opinion, based on his experience, that if it didn't work the first time, then it won't work the next time.  Oh the ever so slight disappointment of not having to be injected over 30 times.

So what happens next?

I asked him about hypnosis and about allergy tests.  He said that whilst hypnosis can cure pain, migraines are a slightly different kind of pain.  And allergy tests won't really answer anything as I am best off going on a very simple diet for a few weeks to see if that helps.  Actually, that second one doesn't seem like a bad idea.  I might store it and try it out one day when I can get my head around what a simple diet would consist of.  Anyone???

So what did he suggest?  Well the first one was Sodium Valproate.  Try it for a few months and see how it goes.  I tried to tell him of my previous failed attempts and scares with medicated preventatives, but he still thought it worth a go.  Apparently they use Sodium Valproate a lot in countries like Germany as a first attempt at preventing migraines, but not in this country.  I wonder why?

Oh the duck is made out of sodium.  I hope that Theodore doesn't mind me using the picture but it is so cute, in a sort of scary way...? Apparently if you throw it into a pond it will explode.  Don't try this at home folks, or at least keep it away from any real ducks as they might get a little traumatised after seeing a sodium likeness explode in front of their little eyes (I almost called this blog post "the way of the exploding duck").

I digress.  He did have more suggestions.  The second medication he suggested is one which I am glad that I can't remember the name of.  I would need liver tests and lung tests and regular blood tests.  I think not!  Let's hope that I never get bad enough to consider it!

We are going to try his second proper suggestion after the sodium (oh aren't I full of confidence).  That is an occipital nerve block.  This involves a local anaesthetic and a steroid injected into the back of the head.  Yes I know that it is more injecting, but this time it will be only one... I think.  I actually signed up for a trial using this treatment in Leicester a few years ago but never heard anything back about it.  I won't go into too many details now as I will save that for when I use it.

What?
Oh ok then...
IF I ever use it.

Tuesday 19 February 2013

Pain v's Pain

Here is an interesting question to put to you.  Which is your best type of pain?  And yes, I know that the first answer will be "the type we don't get", but I'm sorry as that just isn't an option.  Way back when, I wrote about how being ill stops my migraines from appearing (http://anothermigraine.blogspot.co.uk/2011/06/migraines-vs-being-ill.html).  It hasn't happened for a while, but last week, whilst on holiday, I got a familiar twinge in my right foot.  My other arch nemesis arthritis was threatening to make an unwelcome reappearance.  I haven't had a bad attack for a good two years so didn't think to take my meds with me.

Lesson learned.

The hard way.

Have you ever tried pushing a pram containing an exhausted nearly 3 year old up a steep hill at the Zoo after having walked all day on a foot which sends pain searing up your leg every time you put it down?  But did you hear me complain dear reader?  Complain?  Me?  Ok I did a bit but it reeeaaally hurt.

But it wasn't all bad.  No, not at all.  The good news was that my migraines disappeared.  Four blissful days with no migraine and with no background pain.  I haven't had such a luxury for over 6 months.  Reading back at my previous post I said that I preferred the migraine pain to any other pain.  Is it too late to take that back?  Oh go on, please let me.  So to answer my original question... give me excruciating foot pain any day of the week over migraines!

Why?  Well, foot pain is just foot pain.  It hurts and you limp a bit.  Whereas with migraines, you get the pain and the sick feeling, and maybe get a bit grumpy due to the chemical imbalance in your head, can't concentrate, light hurts, I'm sure that I don't need to go on as you will have experienced these and many more in the past.

Sadly the foot meds have kicked in (ehem) and my foot is slightly better.  I say "sadly" because this means that the migs are back again.  So now I have two areas of pain to occupy my poor befuddled mind.  Sometime you feel that you just can't win whatever you do.

Still, my next Botox appointment is just one week away and I am rather looking forward to it... If you can look forward to being pierced 35 times with a needle.  Um, someone remind me why I am doing this again?   Oh yes, it will cure my migs.  Ok now say it like you believe it.... it WILL get rid of my migraines.

Thursday 31 January 2013

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).