Anyone for Migraine Tea?

Hello loyal migraine blog readers.  Here is a post that I started... um.  5 years ago and thought it was about time to finish.  Sorry.  Been rather busy.  But there are some more interesting stories and cures that I have tried recently so I decided to resurrect the ol' blog.  Good to have you all back :-D

I know that I am a gluten for punishment.  Call me crazy but I thought that I should try acupuncture again.  It's been a while since I had any needles stuck in me so what's the worst that can happen.

I want to do go authentic this time so I walk into the centre of Manchester to the Chinese quarter to find an acupuncturist shop that looked like the real deal.  In I go and get an appointment.  But the appointment didn't turn out quite like I had expected.  I was psyched up ready to have lots of lovely needles stuck in me, not my favourite pass-time, and he said no.

Um, sorry what?  I want to pay for acupuncture please?

"No, you have had it before so I prescribe tea."

Now, let me think, needles v's a nice cuppa.  No competition.  So I let my slight disappointment disappear and replaced it with slight shock at how much a pot of tea could cost.

Looking at the ingredients (shown on the pic) this certainly wasn't any normal cup of tea.  So I could forgive them the cost.  Plus I was going through a particularly bad patch to anything was worth a try (I'm sure you know how that feels).

The instructions were quite easy.  Brew it in a saucepan for 20 minutes.  I could add a dash of honey for taste but that was it.  A full mug, twice a day.

And that would cure my migraines.

Really.

What could possibly go wrong?

Ok, so nothing actually went wrong.

It had a distinct taste of mud.  Disclaimer, I haven't actually eaten mud, but you get the idea.  It was very... earthy and bitter and strangely looked like mud and even more strangely, for tea, had the slight gritty consistency of mud.

Ah, but the big question, did it cure the migs?

In a word... No.  I stuck with it for the whole 2 week treatment.  No amount of honey could cover the bitterness so I waited for it to cool and drank it as fast as I could.  I was assured that I would need no further treatment and 2 weeks of mud tea would clear the pain.  But nothing.  No change.  Still getting them.

In fact, if you remember my post of the miracle cure for migs, Click here to read it though, a cracking good read if I say so myself... (not that any of you will as it was posted over 10 years ago).  Essentially that post described my personal discovery that coffee helps migraines.  The point here is that a simple cup of coffee helps them better than mud tea.

As always. this post isn't meant to put anyone off this cure.  If drinking Chinese tea helps your migs then go for it.  It's just that, as per usual, it didn't help me.  The search goes on..!

Cefaly Take 2

My apologies to you all for the delay in following this up.  The Cefaly didn't really work for me and I decided last year to take a break from other treatments for a bit.  Here is a brief part two of my Cefaly experiment from much earlier in the year.

After my rather traumatic experience of the preventative mode on the Cefaly, I decided to give the company a ring to see what went wrong.  A rather nice lady called back telling me to keep it on a lower level until I get used to it as sometime it take a while to get used to the sensation.  So, that evening I placed the device on my forehead and hit the go button twice.  After two minutes I felt a migraine appear above my right eye.  It takes twelve minutes to reach maximum intensity so only being able to get up to two minutes is a bit rubbish of me really.

I tried it a few more times on various levels and settings, but struggled to get very far with it and if anything, my resistance seemed to be reducing rather than increasing.  After a couple of weeks of this I contacted the company and was told that I could return the machine to them for a full refund.  It sounded like this happens a lot so I am grateful to them for providing the service.

I have to stress that Cefaly works very well for a lot of people.  But, it seems, like most if not all of the treatments that I try... it didn't work for me!

Chiropractor v's Migraine

Another year and another possible cure for my migraines.  I am working my way through them all, just for you dear reader.  Today it is the turn of the chiropractor to see if he can click my migraines away for me.  It started with the usual slew of interrogations and form signings, the type of which we become accustom to when entering the realm of a new practitioner.

Once we got down to the matter in hand, my shirt was off and I was lying on my front ready to be clicked.  Only he isn't the sort of chiropractor who clicks.  He can click my back if I want, but he doesn't.  Apparently there isn't any benefit to it and other practitioners only do it for show.  I have to say that I was a little disappointed as I was expecting one huge clunk and my migraines would fade into the distance.  Ok, maybe I was hoping for a bit too much, but one can dream.  To his credit, he was very methodical in his methods.  He actually runs a migraine clinic so specialises in treating people with head pain so my hopes were high.

The aim of our sessions was to work the muscles that get tense when I get a migraine.  After a brief feel of my back, he sat me up and started by working the muscles in my cheek, but not just from the outside.  I was a little put off by this intrusion into my mouth.  Yes, that wasn't a typo.  He massaged from inside my mouth.  A very odd start to the session, but surprisingly I could feel the tension there, so kudos to the doc.

From then on things got... well even stranger.  I was expecting manipulation of my back and neck with a bit of arm bending and head clicking.  I wasn't expecting the mouth, ears, arm-pits or eyes.  This man was on a mission and that mission was to find the route cause of my migraines.  He was chasing tense muscles around my body and as soon as he felt happy that one area had been calmed, he followed the muscular path to the next. 

Let me tell you, manipulating muscles in your arm-pits is something that I would not recommend you try.  There are certain parts of your body that you know are off-limits and then there are others that you randomly discover and very quickly add to the forbidden list.  Arm-pits are now on mine.  Try as I might, I cannot find the words to portray the odd, stabbing, penetrating, pressure that felt almost as if he were inside my body.  Ok it seems that I have found some words to describe it and I will add another one for good measure.  Bizarre.

There were some interesting side plots to his quest.  My shoulders clunk when I raise and lower them.  Apparently this shouldn't happen and he was determined to stop this from happening.  I am sorry to say that he failed in this quest.  I am also sorry to say that he failed in his mission to cure my migraines.  He did change their nature somewhat.  It is hard to describe but my migraines felt different.  Like an old friend suddenly turning up all smiles riding a brand new bike when you know that they've never ridden a bike before.  Same friend... same smile... different mode of transport.

After six treatments of chase the pain around my body, the doc finally admitted that he wasn't getting anywhere and that he didn't think that it was worth me spending any more money.  Again, kudos to the doc as I was ready to hand over my hard earned cash for more hope.  But it seemed that was it.  Back to the drawing board again.

Early Start

Merry Christmas to all of you reading this (assuming that you read it today, which most of you probably won't, so I hope that you had a nice Christmas, or are having a nice, pain free day).

Ahh the joys of waking up with a migraine.  It's my own fault as I had a migraine yesterday and after taking a triptan at lunch time and a paramol mid afternoon, I decided that it was sufficiently in the background to leave for the rest of the day.  Just before bed it started to come back, but I took the decision that a good night's sleep would do the job.

So I wasn't completely surprised that at 3:52am I woke up with a raging mig.  Cursing my bad judgement I tried for all of 3 minutes to go back to sleep, failed miserably and stumbled downstairs to dose up.  "Just give me the drugs man" is a phrase that is becoming quite common in our house, although it's me that says it the most, my daughter sadly has a need to say the same as she has recently started to get migraines.  She is 13 and we think that they are linked to her newly acquired womanhood (hey, I'm a bloke so don't expect details here!)  In a sad selfish way it is kind of nice to have someone else in the house who really understands what I am going through.  And it is also kind of nice to be able to offer support to someone else who has migs as I really understand what she is going through except auras which I don't get and she does.  Our docs are really good in that if we do the research and ask for a specific medicine, they will give it to us.  So she has some triptans of her own now which is kind of cute as her single box is nestled up against the dozens that I have!  Thankfully, she didn't get one last month and this month also seems clear so far, but being the old pro that I am, I made sure that she kept a diary of the previous 24 hours so we can hopefully find a pattern next time she gets one.

Ok I digress, even though it was an important digression.  So I stumbled downstairs, opened my box of tricks and took 2 drugs which contained pretty much everything I needed; paracetamol, neurofen, aspirin, co-codamol and caffeine.  Stumbled back upstairs into bed, put my earpiece in, turned on an Andrew Johnson MP3 and tried in vain to sleep.  Andrew Johnson is a life saver.  He has produced a huge number of apps and MP3s to help people relax, change and create.  I have about a

dozen of them and they have regularly saved me from a sleepless night.  Many a morning I have had to fish through the bedsheets to find my earpiece which has fallen out in the night.  I just wish that I knew what he said at the end of his MP3s as I rarely stay awake long enough to hear that far through them.

But this morning I didn't fall asleep as the pain was too much even for the gentle tones of the mighty AJ.  I am now awake with my boy and feeling the groggy after-effects of the drugs, mig and lack of sleep.  But, at least the pain has gone.  Next time I try to sleep a mig off, will you remind me that it is a bad idea!

Cefaly - at last

I have resisted buying the Cefaly machine for a long time as I have never been convinced by the lack of proper research into it's effectiveness.  There have been tests but they have not been clinical enough to be approved in this country (although it is available on insurance in America).  What we need are some proper double blind tests to prove beyond all doubt that it works.  The other reason that I have been resisting is that in America you can get your money back if it doesn't work whereas in the UK they don't offer the same policy and £250 is just a little bit too much to pay just to try something out.

But, my migraines have been getting slowly worse (I am currently getting 27 days of headaches per month with 18 being migs) so I decided that it was worth the expense to try and manage my migs (actually my mum helped with the costs so yay mum!)

It arrived yesterday and I eagerly unwrapped the boxes to see what it;s all about.

It comes in a cool case to keep it safe.  Quite sturdy and looks good.  The machine itself is disappointingly flimsy.  The battery covers are loose and seem to be gripping on by the skin of their teeth.  But, looks aren't everything, after all, I would gladly slap a piece of rusty metal round my head if only it would keep the pain at bay.

It is easy to put on. You put the plaster on your forehead and rest the machine on the protruding metal contact.
It doesn't click into place but just rests there.  I like to make a clicking noise as it makes it more fun, but that's just me.

Ok here we go... Two presses of the button for migraine preventative...
I am making these notes as I go so sorry for their brevity. 

• Immediate migraine over right eye.
• Eyebrows feel like they are standing on edge.
• Then feel like they are trying to fly off.
• Migraine then over both eyes.
• The fuzziness creeps up my forehead.
• Goes into my head.
• Right back to my crown feels fuzzy and numb to the touch.
• Ouch.
• Ouch.
• Ouch.
• It feels like a hammer above my eyes.
• If I raise my eyebrows up the fuzz stops but the pain increases.
• Ouch.
• No pain no gain.
• Ouch.
• Pins and needles in forehead.
• I think it's reached it maximum now. It does that after 12 minutes.
• Did I say ouch???
• My eyes are vibrating.
• It feels like my forehead is climbing down over my eyes.
• My eyes are bloodshot now.
• If I close my eyes my forehead stings.
• My teeth are aching but I think that's because I am tensing them.
• Do you know I said it had reached its maximum, I think I was wrong.
• My forehead feels like it is made of sand.
• My skull is completely numb to the touch.
• Ouch.
• Ouch.
• This feels like a bad migraine over both eyes.
• At least I know this pain won't last more than 20 minutes.
• I hope the timer works as I've forgotten what time it started.
• It's like a mig without the side effects.
• I was hoping to be able to do things whilst using this but I'm not so sure now.
• I can't see now as everything is wobbling.
• Either I'm getting used to it or the intensity is decreasing.
• And it's over
• Wow release
• My forehead is aching slightly and head is numb a little.
• Slight ache in forehead and it is red in the shape of the electrode sticker.

Wow I feel a bit drained after that.  You can stop the intensity increasing at any time by pressing the button again, but I was determined to leave it and cope. No pain no gain.

 

I tried it again this morning and just as my forehead started to go numb after nearly 5 minutes (I remembered to time it this morning), the batteries ran out.  Slightly disappointing as they are meant to last a month, but I was actually relieved to avoid the pain again...  Still, it won't stop me, I just might press the button before the full 12 minute build up next time!

Nurofen Price Cheats

Sorry for the lack of posts recently, but there hasn't really been much to post about.  My migs have been getting steadily worse and there are no other cures on offer.

It seems that the news has at last caught up with my previous post stating that headache drugs are a rip off!  Nurofen are currently in the spotlight as they have been caught in Australia offering the same drug in different packets at different prices (again, see my previous post stating just that).  But as I found, Nurofen are certainly not the worst offenders.  That prize went to Migraleve Yellow tablets (32p per tablet v's 3p for exactly the same unbranded tablet).  The rest of the industry should be worried as fingers need to be pointed in all direction.

The general advice (as per Radio 4 this morning) is that you are safe to take generic medication over branded alternatives.  They are put through the same tests, the same safety and will act in the same way.  If in doubt, ask your pharmacist.

What my previous post did help with is finding a new tablet.  My new favourite drug is Anadin Extra.  The pound shop near me sells them for £1 for 8 which is pretty good so I stock up whenever I go.  They don't seem to mind me buying multiple packets at once.

Over the Counter Medicines Compared

As nothing was working for my migs, I decided to start an investigation of over the counter medicines.  It was initially in pursuit of something stronger, but ended up being rather an interesting comparison which clearly shows that if you purchase the wrong brand, you risk paying way over the odds for something simple.

The worst example that I came upon is Migraleve Yellow tablets.  They are marketed directly at people with migraines and we are a desperate lot so will quite eagerly try anything.  24 Migraleve tablets have an RRP of £6.38* which is 27p per tablet.  The active ingredients are 500mg of Paracetamol and 8mg of Codeine.  For 84p you can get 32 unbranded Co-codamol tablets with exactly the same ingredients in.  That's 3p per tablet.  Shocking!


I searched the internet for the cheapest comparative price for the same item and chose the cheapest option for each.  So if buying 32 tablets was cheaper than 16 of the same brand, that's what I list.  The prices are as at April 2015 and some sites add postage so prices should only be used as a guide.  The chart is sorted by price per tablet.  All prices are in £ GBP.

(Click on the chart to see it full size)

Let me know if I have missed anything (other than more duplications of the same) and I will happily update this blog post.

* Migraleve Yellow can be found at a discounted price on some sites.  The cheapest I found was 5.59 which is 23p per tablet.

Coincidence or Truth

This is a link to a new blog that I am starting to write.  
http://coincidenceortruth.blogspot.co.uk/

There are many books out there quoting stories from people's lives where so called coincidences happen.  They provide you examples of how Hashem (G-d) is in our lives all of the time and all you have to do is look and you will see.  The problem is that most people don't look and if you don't look, how can you expect to see?

I love to look.

I love to see.

If you look.

You will see.

Now, the problem with most of these books is that whilst the stories are very nice, you can't quite bring yourself to believe that all of them actually happened exactly as the story makes out.  This blog is different.  I can personally vouch for each and every one of there stories.  How?  Because they happened to me.

My Rabbi keeps on telling me to write these stories down and I kept on saying that one day I would, but then I never did.  But the other week, just before Pesach, something happened that made me change my mind about noting them down.  I even told the story in Shul one week when the Rabbi wasn't in.  I like to get up every now and then to speak.  I am not pretending that I am an halachic authority on anything.  But we are only a small Shul so I can get away with it.  In fact as these stories unfold, you will see that I was once very secular and am now bal-tshuva.  After telling this story in Shul a number of people came up to me afterwards to tell me how amazing the story was.  So I thought that it was about time that I did start to write these stories down and here they are, starting with the aforementioned story.
http://coincidenceortruth.blogspot.co.uk/

I hope you enjoy the stories.

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

Occipital Nerve Block for Migraines

I have worked my way through a lot of preventatives to try and cure my migraines and none of them have worked.  In fact most of them had an adverse effect on me.  I heard about the occipital nerve block a few years ago when it was being trialled in Leicester but didn't manage to get on the trial.  But now here it is, available to all and sundry (via a referral of course).  Thankfully, my neurologist seemed happy to tick the box and sign on the dotted line during the 5 minute consultation that I manage to get with him or one of his team every 4 months.  Not a lot is ever discussed, so I am lucky that he is prepared to sign me up for pretty much anything that I suggest, as long as it is available on the NHS.

So what is an Occipital Nerve Block?  Let's start by describing the occipital nerves as that is what we are planning to block.  Without going into too much medical technogigery, they start in that nice massageable part at the back of your neck.  They then work their way up through the back of your head, branching out multiple times, until they reach the top of your head and above the ears.  Think of it like painting a tree on either side of the back of your head and that is pretty much it.

The theory behind blocking them is that you stop the pain temporarily and that will fool your body into forgetting about the headaches.  Reprogramming your mind.  The question is, will your mind be so easily fooled?

I get 80% of my migraines on the right and 20% on the left, so the neurologist suggested that I have both sides injected.  The more the merrier as far as I was concerned!  So off I trotted (after waiting for the appointment to come through which, to be fair, was remarkably quick) to the local hospital, ready for anything.  Needles aren't my favourite thing in the world, but it's amazing how a round of botox (approx 30 injections given in about 5 minutes) can help you overcome your fear.  The nurse advised me that I should start with one side and then maybe make another appointment to get the other side done.  The side effects would be numbness in the head, which didn't sound too bad.  But as the neurologist had suggested doing both sides as the same time I persuaded her to go with that option.

The first injection was done in the bottom of my head on the right side.  I always get a rush of adrenalin when pierced with a needle which make my hair stand on edge.  But other than that, it wasn't too bad.  The second injection went in the top of my head and that hurt a bit more as there isn't any fat to absorb the needle up there.  But on the whole it wasn't too bad.  I did start to feel a bit wobbly, but a mig had started to appear so I put it down to that pre mig feeling that nobody every talks about.  The nurse suggested again that I only have the one side done, but my male bravado kicked in.  Of course I was ok, absolutely nothing wrong at all.  On with the show and inject away!  The bottom injection on the other side hurt but I grinned and bared it.  The top injection also hurt, a lot more than any of the others which is when the bravado started to slip slightly.  I cringed away from the needle.  But the nurse wasn't having any messing around.  Almost in defiance of my male preening she made sure that the needle stayed in for the maximum time to make sure that every ounce of local anaesthetic got into my head.

To be fair, the nurse was very nice and told me to sit down for a few minutes until I felt ok to go.  There was no need to see her again unless I needed to.  The mig was trying to win.  I could feel it on the inside, but strangely not on the outside of my head.  So maybe it was working already.  My head did feel a bit strange though, sort of cold and clammy.  But other than that I felt fine, so after a few minutes I shrugged my shoulders and got up to go.  As I rose I placed a hand on the top of my head to see if I could feel it (either the hand or the head)...

And then I sat down again rather fast as the room started to spin at an alarming rate.  My head was going numb, that's for sure and boy was it a strange feeling.  What seemed an eternity later, but was probably only about 3 or 4 minutes, the nurse walked by, so I called out to her to explain that I was feeling rather wobbly and perhaps leaving now wasn't the best thing to do.  She escorted me to a nearby bed and very kindly told me to rest for as long as I needed.  They tested my blood pressure which was understandably a bit low, but nothing a few minutes rest wouldn't cure.

By this point the whole of my head was numb including the all of my hairline and even the back of my tongue had started to go numb.  About 20 minutes and a glass of water later, I was able to sit up without the room spinning.  I gave it another few minutes just in case and then was up and back to work!

So did it work?  In a very simple word.  No.  Not a thing.  Not an ounce of difference did it make.  Of course, that was just for me, so don't be put off trying for yourself and do let us all know how you got on.  But for me, I think that is it for injection based treatments.  Botox and Occipital Nerve blocks are not for me.  Time to wait for my next 5 minutes appointment in a few month time and boy did I have a surprise waiting for me (ok, to lessen the excitement slightly, it wasn't a cure but a new enthusiastic neurologist)!

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.

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!

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!

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???

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.

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.

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.