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
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