Fifteen Years

For at least the last 15 years I have suffered from headaches. That’s not to say that I’ve had a headache for 15 years or that for the whole 15 years I’ve had regular ones. These headaches appear every now and then, occur regularly for a few weeks and then disappear again. But when they do appear they are very very very painful, can last for a couple of hours and nothing will get rid of them.

I’ve described this to at least 6 doctors over the past 15 years but the pain is usually down one side of my face. The pain in my head is like someone sticking a knife into my skull. I also find that sometimes my eye feels like it’s going to explode. I get a burning sensation in my nose and sinuses, earache and can also get pain like severe toothache in my jaw. They pain can come on very suddenly but you can usually feel that it’s about to start, quite often the burning sensation in the nose is the first sign of an imminent episode. They can happen any time, I often get awoken in the night by one but they have occurred at work, on trains, even when driving and there is nothing that works to stop them.

Over the years I had tried all sorts of pain relief from paracetamol, through ibuprofen and co-dydramol even up to the morphine based tramadol but none have given even the slightest relief. I have paced the floor, curled up in a ball, and tried desperately to find some relief. Annoyingly what worked one day may give no relief at all the following day and the frustration felt when that happens adds to the distress. The things that I found that seemed to help were a cold flannel on my head,  steam inhalation or just sitting in an upright position. The only thing I could really do was wait until the pain went off.

I have had nights where I have gone to sleep and been woken an hour later by the throbbing pain, sat in agony for over an hour until the pain subsided enough to allow me to fall back to sleep again only to be awoken again an hour later by another blistering headache. I have even been bluelighted into hospital when Sarah was so worried about me and being unable to get hold of either NHS direct or our doctor called 999. It’s no word of a lie but there have been times when the pain has been so intense that I have actually wished I could die.

Over the years I have searched for an answer to one question – what causes these headaches. When they first started my Doctor suggested that I get my eyes tested and my teeth checked, which I did but nothing was found to cause the problem. I kept a food and drink diary but again there was no correlation between anything I ate or drank and the onset of a headache. They headaches have occurred at different times of the year – for a while I wondered if there might be something in the air to cause it as I was getting them in the springtime but then I remembered that I had had them in winter before. There just didn’t seem to be any one thing that each attack had in common.

My Doctors thought it might be a sinus problem so they prescribed antibiotics which seemed to work for the first two times but I later discovered that this was probably because I had delayed going to the doctors for a couple of weeks and it was probably just a coincidence that the headaches disappeared as I was taking the course. This was brought about by the attack last year where I went to the doctors straight away and after 3 different antibiotics (the second of which I was given two courses of) the pain finally went but thinking about it now it had probably just ran it’s course by the time I finished the last lot. i was even sent for a CAT scan but the NHS being what it is, by the time I was called the headaches had gone and they found nothing.

So in June this year I was looking at the BBC news feed I have on my mobile phone and the headline said something like “minutes after the operation I was pain free” which intrigued me so I read the story. As i did I realised that the man in question had very similar symptoms to mine so I google’d the name of the disease, Trigeminal Neuralgia, he was suffering from and as I read the page I thought “this could be what I have” – especially when I got down to the bit that was called Atypical Trigeminal Neuralgia where the described symptoms were even more like mine.

The worst thing was it said “This condition is particularly difficult to treat.” – great. Anyway I bookmarked the page and made a mental note to ask the doctor about it next time the headaches returned.

Last week I had been working late and didn’t get home till 3am. I went to sleep and woke up at 4 with a headache. After all this time I can tell the difference between a normal headache and one of the bad ones. I took some paracetamol anyway and got a cold flannel and sat upright on the sofa with a pillow under the side of my head and after a while I was able to get back to sleep. The following night I woke up twice with the pain so when it got to 8am I phoned the Doctor and made an appointment.

After doing the school run I checked the website again and wrote down the name of the condition as well as that of another possibility Cluster Headaches which have very similar symptoms to that of trigeminal neuralgia. I also made a mental note the possible treatments before setting off. I was determined I was going to mention this even though a lot of GP’s don’t like the idea of self diagnosis via the internet.

Once at the Doctors I relayed the history of my headaches, told him about why I didn’t think the antibiotics were the answer and then explained about what I had found on the internet. I got the piece of paper out of my pocket and started to read the name of the condition but he finished it for me. He agreed that it could well be the cause and pointed out that people have been known to kill themselves because of the pain – I told him that was something I could understand. he showed me a diagram of the brain with the trigeminal nerve which runs from the top of the spine to the eyes, nose and mouth which would make sense as all are areas where the pain is found.

In fact as it turns our both atypical trigeminal neuralgia and cluster headaches are often referred to as  “the suicide disease” or the “suicide headache” because of the intense pain which has been described as “probably the worst pain that humans experience”.

We then discussed treatment, I should point out that this was a doctor I hadn’t seen about these headaches before, and as I came with some knowledge I was ready for this. He initially suggested that he up the dose of the amitriptyline I am already taking for restless leg syndrome but I had already read that there was doubt to it’s effectiveness so I suggested anticonvulsants which I had read were the first line treatment. He looked it up in his book and prescribed Carbamazepine which he told me to take one a day to see how I got on and if necessary to increase this to 2 a day.

So I got the tablets that night and took one. Unsurprisingly I had a headache that night and again the following night – but they seemed to have lessened in severity whereas usually they get worse as the first few days pass. the second night the pain went off quite quickly. Since then I have been taking one tablet each night and I have had no more headaches and that has been over a week.

I know that it could be a coincidence that the headaches have gone or even the placebo effect but if the drug will ease them then I can look forward to much less pain in the future next time I get an attack. It does however make me angry that it has taken so long to find out what is causing the headaches especially when I have seen so many different doctors and none of them have put together the symptoms and come up with either trigeminal neuralgia or cluster headaches as a cause. Just think how much pain I have been through over the past 15 years.

It should then come as any surprise to find that Jillie Abbott, chairman of the Trigeminal Neuralgia Association, pointed out in that initial BBC article that ” the incidence of Trigeminal Neuralgia is rare but because of this the association struggles to get its message out to GPs, dentists and specialists, many of whom are shockingly ignorant about the condition and its treatments”. I have also found out that this year the matter was even raised in Parliament in July when Labour MP Jim Fitzpatrick, who also suffers with the condition, raised it in order to try and raise awareness of it. There is also a support site for Cluster Headaches too.

The more I look into it the more I think it is likely that I either have the cluster headaches or a combination of both but at least I have the medical people looking in the right area now and hopefully as I said the future can be less worrying as I may now be able to get quicker relief from the agonising pains when they appear.

Download a pdf booklet from the TN associaition about the condition and related conditions  here

The Long Run

I had this idea….

The webserver in the shed that hosts this and two other sites had been having a few problems because of the connection between the house and the shed. The remote connection was first installed when we lived in the Big Blue House to link the area in the garage where I had my stuff to the main house and was a wireless bridge which connected the computer in the garage to the wireless connection in the house. Since we moved of course I have added more machines and the wireless box was connected to a router which then fed the rest of the computers including the webserver. Lately the connection has been dropping a lot and hence the site had been going down. Maybe there was too much traffic – I don’t know for sure.

Had I known that I was going to set up a webserver I would have thought about running a cable when I put the power cable in. This had involved lifting a number of decking boards in order to run the cable underneath which was a bit of a pain and I wasn’t too keen to have to do it again in order to put a network cable in. Then of course there was the problem of getting it into the house as the most obvious entry point had a door in the way! So for these reasons the idea had been put to one side and only now raised it’s head because of the connection problems.

Then by chance we had a problem with the aforementioned door. the step had cracked a few months ago and we had meant to get it fixed under guarantee but hadn’t got round to it. However a few weeks ago it got worse and effectively collapsed into itself. We then discovered that it had simply been glued into position and that there was a huge gap under it. While I was looking at it I discovered that under the door was an airbrick which, without the step in place, you could see from inside. A lightbulb went on above my head – I could run the cable through the airbrick and into the house – brilliant! Only problem was that the cable wouldn’t go through the airbrick with the connector on it and I had no means of replacing it if I took it off.

So it kinda sat there for a week or two – a bit like the repair as the company dithered. I started to get more frustrated about the server connection and decided I had to do something. I asked the IT guy at work if her had a set of crimps he could lend me and he did so I resolved  to do it over the weekend. I took the crimps and a couple of connectors home with me and spent sometime trying to decided how to run the cable. The best solution was definitely under the decking but how to do that without having to lift even more deck boards that before 9as it was a longer run). The easy option was around the walls but both possible routes had problems – a gate one way and a fence the other way.

So the first thing I did was look to see if the cable would go through the gap between the boards and it would so all I had to do was figure out a way to do it. then there was another lightbulb moment and a metal coathanger was destroyed (as was a pair of cutters trying to destroy the coathanger!) I then set about threading the cable under the cross beams with the coathanger so that I could then run the cable under the decking by pushing it through the gaps. At first it was tricky but once I got the coathanger bent correctly it soon started to fly along the deck. Eventually after about an hour I reached the far end and triumphantly pushed the cable through the airbrick and pulled it through on the other side.

This was great – the hard bit had been done now all I had to do was run the other end into the shed and we were there. I decided to leave this till the following day as Sarah wanted to go Christmas shopping so I went back to put the tools back in the shed and figured I would just put the other end of the cable through a gap in the door too so that it wouldn’t get wet if it rained. However when I reached the end of the decking nearest the shed I was appalled to see that the other end of the cable wasn’t there.  It was then I realised why the cable had been difficult to pull through at one point, it was because I was actually pulling the whole loop of cable through the gap into the area under the decking – how could I have been so stupid? I should have made sure the other end had been tied off to something.

So I set about trying to find out how far the end had disappeared under the decking. I discovered it about 6′ from the entry point by looking through the gaps in the decking. I had to give up at that point and head off to the shops. It was dark by the time we returned so any rescue operation would have to wait under the Sunday morning. I spent the evening devising ideas on how to get it out without lifting the boards but I had put the battery for my electric screwdriver on charge – just in case.

Thankfully the weather was still dry the following morning so I set about trying to get the end of the cable out from under the decking using Plan A, which was to hook it with the coathanger and drag it along to near the entry point so I could hook it and drag the cable out (or even get one of the kids to put their smaller hands through the hole and get it). However it soon became apparent that it was going to be difficult to grab the cable with the hanger and what was needed was Plan B – this involved finding something that was thin enough to go through the gaps in the decking but solid enough to be able to drag the cable along – a tall order. I then had an idea – I used to have an extendible pointer, the type they used to use before laser pointers, if only I could find it and just for once I could! Using this I managed to drag the cable about half of the distance before disaster struck again it snapped!

The cable had snagged on one of the cross beams and was lodged there so I had no option but to proceed with Plan C and that was lift one of the boards up. The good news was that because I had been able to drag it so far I now only had to lift a short board which was held in place with no more that 7 screws. I was also relieved to find that the screws came out a lot easier than they had done the first time I needed to lift them and in no time at all I had managed to get the cable pushed back through the entry point. Now it was time to get the drill out!

I drilled a hole to allow the cable to pass through into the inner part of the shed from the outer part – it was big enough to allow the cable to pass through without me removing the connector. The cable itself I ran through a gap at the bottom of the door and then cable clipped it under the door and round to the wall where I cable tied it to the power cable. having completed this end I left it unplugged and went to sort out the other end. I drilled a hole in the floorboard and pulled the cable through and then pushed it under the skirting board till it reached behind the computer station that had the router on it. Now came the bit I had been dreading!!!! Crimping the network connector back on!

I had had the sense to keep the end I cut off the cable so I could see the order in which the colours ran and now I had to try and arrange the 8 wires in the same order which is not easy when they seem to have a life of their own! Eventually after  a few goes I managed to get them pushed into the network connector and the connector inserted in the crimp tool. I pushed the handles together and to my surprise the cables stayed inside the connector and as far as I could see they were all in the correct order. I plugged it into the back of the router and went out to the shed to plug the other end in. I unplugged the wireless bridge and plugged the cable in and bingo I had connection. The only problem was that I had to renew the DCHP lease on the mac but everything else worked without a problem!

So today I have been making use of the now more reliable connection by upgrading my WordPress installations on the server which was long overdue and hopefully the connection will mean that this site and my other two sites will be more reliable in the future.

Oh what a night!

We had been saying for a while that we desperately needed a good night out and last night we got it! And the best thing was it was a night out that money just can’t buy (well not yet anyway!). It all started with a posting I spotted on Facebook and quickly responded to  with a good story and ended up with us seeing Priscilla – The Musical again for the 3rd time! We first saw the show in Sydney when we went there for our Honeymoon and we saw it again when it opened in London with Jason Donovan in the role of Mitzi.

We had been saying for a while that we wanted to see it again so when I saw the posting which said that they were holding a registration evening for “Mates of Priscilla” (MOP) and asked people to tell them why they should be there I e-mailed them the story about flying from Melbourne to Sydney just to see the show and before I knew it I had an e-mail back saying that I was in! I thought that we had just won some tickets to see the show but two days before we were to go I saw some pictures on facebook of a previous event. So we knew that we were in for an interesting evening!

Priscilla Shoe small

The evening didn’t get off to a good start as my train up to London was cancelled and this meant that our plan to get something to eat before we got there almost went out the window. In the end though Sarah went ahead and ordered so the day was saved! At 6pm we crossed over the road and as we arrived a load of people were being ushered into the foyer. We were all given MOP registration forms to fill in which asked us some stupid questions like describe yourself in 3 words or tell us something about yourself as well as questions like who’s your favourite Priscilla character (Felicia) and why do you love Priscilla. When we handed the forms in we were given a ticket for the show and a goody bag. In the bag was a program, a t-shirt, a blue feather boa and a ping pong ball (hopefully unused!).

We were told to put our t-shirts and boas on, which we did, while the Best Mop told us the idea behind the scheme. The idea is great we will be informed of upcoming special offers for Priscilla and we have to publice them. In return when people book the offer using our special MOP code we get points – and what do points mean? Well if we collect enough points we could be eligible for special trips such as a trip to the opening in New York or a trip to Oz. So if you fancy going to see the show check with me first – ok?

Cupcake Girls small

We were then told that there was a special surprise that we were the first to try out but it was, like all good queens, running a little late – in the meantime they produced one of the costumes worn by Oliver Thronton when the show first opened that we could try on. Then a drag queen appeared and we all had our photos taken with her. We were just having a group photo taken when we were told the special surprise was ready and would we all come outside. Outside there was a pink double decker bus which we were all invited to get onto.

The bus had been decked out Priscilla style with flashing lights and typical decor. We went upstairs and sat at the back of the bus. The bus took us down to Trafalgar Square, back up Haymarket to Piccadilly Circus before heading up Shaftsbury Avenue and finally taking a detour through Soho to Old Compton Street and back to outside the theatre. All the time there was music from Priscilla playing and we were served glasses of fizz and special Priscilla cupcakes with a shoe on top! All the way people were laughing and waving out the windows to poor unsuspecting passers by. The drag queen entertained us with suitable comments and dashed up and down the stairs. Our glasses were regularly topped up and we all had a great time!

Priscilla BusOn the bus small

Sorry about the photos I only had my cameraphone!

After all that the show could have almost been anticlimax but of course it wasn’t. We had seats in the Grand Circle which is the first time we haven’t been in the stalls. We had said last time that we should sit up high so we could get a different perspective on the show and see the shoe scene from above as some of the detail can be lost from below! As almost everyone around us were our fellow MOP’s our section was probably the most enthusiastic part of the crowd with whoops and cheers at all of the best lines. The part of Bob is now being played by Ray Meagher who is famous for being Alf in Home & Away, a fact recognised by our t-shirts.

So not just a good night out, a fantastic night out. A huge thanks to everyone who made it a fantastic evening and as Sarah asked me as the curtain came down at the end – when can we go and see it again?

Sarah and Drag Queen small

Thinking about the big issues

Last week I tweeted “I’m finding this week that everything I’ve done keeps coming back to the same ideas – weird!” and indeed the week had ended with me thinking about something that been triggered off by listening to Radio 4’s start the week on the way to work on Monday morning. That idea was one of “a new morality” and where it would come from.

The spark for this train of thoughts was the discussion of a new book called “Chocolate Wars” by Deborah Cadbury which:

charts the rise of the three big Quaker chocolate companies – founded by the Fry, Rowntree and Cadbury families – and examines how these chocolate pioneers adapted their religious principles to grow the businesses. As the families battled it out against each other to perfect the latest recipes to entice more customers to their chocolate brands, they were also working closely together to address local poverty and improve conditions for their workers. Deborah Cadbury explains how this so-called ‘Quaker capitalism’ gave way to short-term ‘shareholder capitalism’, which ended with the American food giant Kraft paying nearly $20bn for Cadbury in early 2010. (from BBC Radio 4 website)

The discussion questioned where a new morality would come from given that the religious principles that drove the Quaker capitalism was no longer a dominant force in society and that something was required to bring the current attitude to wealth creation without responsibility or conscience under control. This is something I’ve been thinking about for a while, that a huge sea-change is needed in our society to bring an end to the me generation and restore community at the heart of daily life. It saddens me to think of the way society has changed during my lifetime and that I have sat back and let it all happen. Short term greed and self centred behaviour has become the norm – and I too have been guilty of this sort of behaviour myself in the past.

The latest financial crisis has brought a lots of issues to the surface and it’s time that we as a society stopped trying to make a fast buck and worked out what’s best for us. It has shown us that banks only care about making money and they don’t really give a shit about how they do it. The current trend is to invest in emerging markets such as China or India, which on the surface is all very admirable, but in reality the money could be pulled out from under the feet of these markets as soon as it looks as though performance doesn’t meet expectations or when the bubble inevitably bursts just as it did with the dot.com boom. And I wonder just how much of the money the previous government printed in it quantitative easing program has been invested outside of the UK where it was supposed to help restore the economy and ease the lending crisis.

During the week a picture was posted by David Gans of a sign he had seen which was a quote by Mahatma Ghandi which again returned to this theme. It listed the causes of violence and at number 4 was the expression “Commerce without Morality” which to me sums up the situation we find ourselves in today. The theme of a new morality raised it’s head again at the end of the week when I was editing a video of a discussion about climate change. The panelists asked the same question “where will the new morality come from” citing again that a sea-change is required to bring about the changes that can prevent catastrophic changes in the earth’s climate.

They discussed the vested interests that would prevent the changes from taking place and suggested the only way we in the west could prevent the developing economies from creating more and more greenhouse gasses by burning more and more fossil fuels,  which they have in abundance and would need to do in order to produce the energy that would be required as their economy expands and drives consumerist growth, would be for the west to develop the technologies it and give it away to the developing nations – not a scenario that many people could see happening. They also discussed the concept that the financial markets have already seen a way to make money out of any attempts to reduce carbon levels proving that if there is a chance to make a few bucks these people would sell the existence of mankind down the river!

The final thought arrived via Twitter yesterday, again from David Gans, who tweeted “There is something gravely wrong with a system in which a few hundred people make billions and a few billion people make hundreds”.

This week the big issue came from a source not usually connected with weighty subjects – Coronation Street – although I didn’t realise it at the time. The second episode of the soap yesterday concerned the death of one of it’s long time regulars Jack Duckworth. The scene was filmed in a way not typical to the soap in that Jack, sitting alone in a chair, suddenly sees his wife Vera who had died a few years ago. He asked her for a kiss before asking if she had been waiting for him. She replied “Of course I have, come on there’ll be a bus along in a minute”. With that the camera zoomed up through the house and out of the roof into the street.

I liked the idea of Jack not being afraid to die because his beloved Vera was waiting for him. I know my dad told my mum as she lay dying that her father and her sister would be waiting for her. The question of what happens after death is one that I’ve given some thought to over the years. I don’t believe in a god per se but I do believe that there is a force beyond our understanding from which we come and to which we return after death and I like to think that we would be reunited with our loved ones who have gone before us.

This issue came back again this morning which is why I started to analyse the scene from last nights show. Listening to the radio on my way to work this morning there was a program on Radio 4 called Twin Sisters, Two Faiths which told the story of two twin sisters, one of whom was a Christian the other followed Islam. The story also dealt with the terminal illness of their mother who was a lifelong Agnostic. It discussed the ways in which the family dealt with their different beliefs and as the mother’s condition worsened how each sister felt her faith helped her. In the end the mother has a sort of deathbed conversion and decided that she did feel that their was a god but what sort of god it was she didn’t know. She said that she tended to feel more for the Christian faith as it was too late to try and understand Islam.

In some ways it touched me on a personal level as the lady in the program was suffering from lung cancer, from which my mum also died and my father is currently undergoing treatment for the same disease. I know as my mum lay ill in hospital I went to the hospital chapel and as I sat in that sterile environment I prayed that if god had any mercy he would end my mums suffering – he didn’t. I hope it’s a long time before I have to watch my father go through that. I know death comes to us all but it would make things a whole lot easier if we knew that the ones we have loved and lost would be waiting for us.