Thursday, 9 February 2012
Unexplained seizures? It could be epilepsy.
If you are having unexplained seizures which your GP, or other medical expert, is putting down to stress because he or she has no other explanation for them, I would strongly suggest you take a look at the Epilepsy Society website.
The reason I suggest going to this website is because I have a friend who was suffering from seizures for several years before he was eventually diagnosed with epilepsy. He was having, what we at the time called, "funny turns". They began by occurring several months apart, but gradually became more frequent. To me, the symptoms were bizarre, as I had never come across anything like it at all. My friend would turn very pale as if all the blood had drained out of him, he'd start smacking his lips together and stare blankly at his hands all the while, moving them around as if he'd never seen them before. He was unaware that I was in the room and didn't answer any of my questions. After several minutes of this totally out of character behaviour, my friend would slowly come out of it. He'd look around the room as if he'd just materialised from another universe and complain that he didn't know what was going on. He didn't know what day it was, what he had just been doing, where he was living, in fact his short-term memory was completely lost for about a quarter of an hour. He knew his name, where his parents lived, where he went to school and anything I asked him that was to do with his distant past, but anything within the year or so was gone. Shortly after the seizure he'd start to remember things until he'd eventually say he was back to normal, but actually he rarely was. It would take the rest of the day for him to get himself together again, and as the seizures became more frequent, it would take up to two days.
After plenty of persuading from me, (about two years!) Graham eventually went to see his GP to find out what might be wrong with him. His GP referred him to a neurologist who sent him for an EEG and an MRI scan, both of which came back as normal. Well of course they did. Graham wasn't having a seizure at the time of either scan so there was no abnormal activity registering in his brain.
As a result of the scans, the neurologist sent Graham to see a psychiatrist, which suggested that the problem was psychosomatic in nature. The psychiatrist had a 2 hour consultation with Graham, during which time he asked standard questions such as, "Do you drink?", "Do you smoke?" and, amazingly, even "Do you suffer from epilepsy?"!! No one had ever mentioned the possibility of epilepsy, so as far as Graham was concerned the answer to this question was 'No'.
After the consultation, the psychiatrist wrote to Graham's GP with three possible diagnoses:
1. Dissociative Amnesia
2. Unexplained medical phenomenon
3. Factitious disorder (in other words - He's making it up)!!!
The psychiatrist then referred Graham to a psychotherapist. He attended his sessions twice a week for about a year. The journey took an hour round trip and Graham drove there and back each time.
After a year of therapy there was no evidence of any improvement in Graham's condition, in fact the seizures were becoming more frequent and the post seizure effects were lasting longer. I had started taking video footage each time Graham had a 'funny turn', because by now he was recognising the signs that warned him he was about to have a seizure. (We now know them to be 'auras'.) He took this footage in to one of the sessions with the psychotherapist who found them to be very interesting and concluded that the cause was all stress related.
I eventually persuaded Graham to go and get a second opinion. It was like pulling teeth! He doesn't like upsetting people and by asking for a second opinion he felt like he was suggesting they'd been wrong in the first place. (Which we now know they were, of course!) So he went back to see his GP. This time he took the video footage with him. The GP barely looked at it and dismissively asked "What do you want me to do? Are you saying you want a second opinion?" Graham almost said "No", because he didn't want to cause any unnecessary trouble. Luckily, he didn't and his GP referred him to a second Neurologist.
So, several weeks later, Graham took his laptop to the hospital and went to see another Neurologist. After watching the video, the Neurologist asked if Graham would be happy to spend some time at the Chalfont Centre for Epilepsy. He didn't have a problem with this so was sent to see a third Neurologist at Chalfont, for yet another consultation. This is where things started to get interesting. Firstly, as soon as the Neurologist at the Chalfont Centre watched the video, he told Graham he should not be driving and would have to inform the DVLA that he was a potential danger on the road. As you can imagine, this didn't go down very well. No other Doctor, Psychiatrist, Neurologist or psychotherapist was of the same opinion, yet this one medic was about to take Graham's driving licence away for, as yet, no explained reason. The next thing the Neurologist said was that Graham's seizure he'd just watched on the laptop, was atypical of epilepsy! In other words, probably not epilepsy at all but caused by stress. However, he thought Graham would benefit from a few weeks at the Chalfont Centre where he would be placed on an EEG for an extended period (several days) in an effort to 'catch' a seizure.
Graham was at the Chalfont Centre for almost three weeks. The first week was uneventful, but on the second week, he was put into his own room, attached to an EEG and monitored by video around the clock. As luck would have it, he had two seizures (one while sleeping!) whilst being monitored and guess what? The official diagnosis was: Complex Partial, Left Temporal Lobe Epilepsy.
So why did it take years for this condition to be discovered?! Once diagnosed with epilepsy, Graham started trawling the net for more information on his condition. He was flabbergasted to see on site after site, that some of the common signs of Complex Partial Temporal Lobe Epilepsy are smacking of the lips, confusion, a vacant stare and short term memory loss!! These were obvious signs in the video footage I took! And not only that, but these were the very symptoms that Graham had been complaining about all along!
Graham's seizures are now being controlled by medication which he will have to take for the foreseeable future. There are many side-effects to anti-epilepsy medication, but he's been lucky enough to get away with little more than a bit of drowsiness. Sadly, the medication hasn't helped his memory problems and he continues to have the memory of a goldfish at times! He has his driver's licence back as he has been seizure free for over a year (though getting it back took four months!) but if he has another seizure (or even just an aura) at any time, it will be an instant ban and he will have to go another year seizure-free before the licence is returned to him once more. If he ever decides he'd like to try coming off the medication he'll also be banned from driving for six months - so you can guess how soon that's likely to happen!
Is it possible that YOU could be suffering from epilepsy?
Epilepsy is a neurological condition where there is a trend of seizures that start in the brain.
There are more than 40 different types of epilepsy, so not everyone who suffers from it has the same type of seizure. Often, the seizures bear no resemblance to the type-cast, convulsions, thrashing around or jerking movements, that we imagine as soon as the word epilepsy is mentioned. Indeed, some sufferers have seizures without anyone being aware of it other than themselves. Some people go blank and stare vacantly for several minutes, others may become confused and behave in an unusual manor, some will be unaware of what is happening for a while, but all of them will start in the brain.
After some thought, and with Graham's consent, I have decided to publish one of the videos I took of him while he was having a seizure. I hope it will help someone who is having similar issues but has no idea what is going on with them.
Please feel free to comment.