An Unusual Reaction

by Sue Goss

In 1962 I had my first major tonic clonic seizures and the neurologists suspected I also had absence seizures in class. I was put on Dilantin and Phenobarbitone, all that was available at the time, and the seizures gradually reduced or at least became manageable.

By 1970 I was exhibiting new variants of seizure which neurologists labelled ‘complex partial’ using my descriptions. So I presumed that I also had ‘temporal lobe epilepsy’ which was highly likely because I had been mangled at birth! EEGs showed no abnormality. MRI, PET and videomonitoring had not even been invented (nor had computers).

When I arrived in UK for a 7 year working holiday, a hospital in Cambridge, specialists told me that the Phenobarbitone was giving me all sorts of symptoms from tiredness to constipation and they took me off it. I was a new woman! They replaced it with Tegretol, a very new drug just developed for complex partial epilepsy. It was me who told them I had complex partial - PLEASE REMEMBER THAT NEUROLOGISTS RARELY SEE US ACTUALLY HAVING A FIT SO THEY HAVE TO DIAGNOSE ON OUR DESCRIPTION - A STRANGE PROBLEM!

For many years this seemed a good solution although the strange ‘deja vu’ and blanking out episodes continued with the occasional major seizure - I never expected to be seizure free like most people.

When I returned to Australia I began seeing a neurologist who put me on to Epilim (as well as Tegretol and Dilantin) which also seemed to work well at first.

After a few years, once I had young children, it was decided to withdraw the Epilim as even doubling the dose had no beneficial effect and many different types of seizures were worsening, including the sort that might take me walking many miles as an automaton, while clutching the pram. That’s when I was put on to Sabril which nearly killed me.

Soon after that, this neurologist retired (again - his attempts were made using my own descriptions and his research with many other patients who had tried the various drugs - what else could he do?) and I went to see another neurologist in Melbourne. By this time, my days were almost never fit-free, that is - I almost never had tonic clonic seizures, so that was great, but these other episodes began filling up the day, especially when I began my work as a journalist for the Age and was writing in front of the screen a lot.

When MRI’s came in, I had several to see whether I had a focus that would be suitable for surgery. They could find nothing at all on the MRI, or the PET, which I had recently. I just had these continuous episodes which looked like partial seizures with lipsmacking, head scratching, looseness of expression and strange noises.

Over the last few years, life as a mum has become very difficult because I can only walk a short way to get shopping and have blackouts on the way home - if I am still able to make decisions when I return I can put myself to bed but usually the kids have to try to persuade me to lie down or I walk around wondering what I am doing and where I should be. I don’t usually do anything dangerous but apparently I look extremely blank.

About a year ago I began losing control of my bladder during these ‘complex partial’ episodes. My children, now teenagers, became really afraid that I might ‘go off’ at any time and found it hard to treat me like a real person. Eventually one of my boys admitted that he thought I was dying slowly and that every bit of stress they put on me as a mother (VCE, musical performances etc) was contributing.

Professor had suggested removing Tegretol when I first went to see her but I had protested vigorously for many years, believing that my complex partial seizures would become much worse. She had tried to get me in to hospital for monitoring many times but I was afraid of surgery. She had explained that all they wanted to know was exactly what kind of seizures I was having so that they could change drugs if necessary. I was not keen on spending 2 or 3 weeks away from the family and had heard that many people exhibit no seizures in hospital even so.

When I realised the children seriously believed I was dying, I consented to go in. Professor must have suspected strongly that my seizures were NOT complex partial at all and may even have suspected that the episodes which were taking over my life were caused by the Tegretol but she could not convince me to change what I thought was working well enough. So it was not the fault of any doctors or specialists.

When I went into hospital for videomonitoring a month ago, I was taken off all my drugs. They captured the classic tonic clonic seizure tracing and video on the first night. It was generalised (meaning it begins everywhere in the brain at the same time rather than starting at one point or focus) so the Dilantin was the correct drug. They put me back on half-strength Dilantin and nothing else. I did not have ANY of the episodes, which I had described although my husband took a whole week off work to sit beside me and alert them as soon as I began one of these. On the Thursday, they caught what seemed to be the sort of episode we have all been describing, with a turning of the head, lifting of the arms and slackness of face. I do not remember having it but it was early in the morning.

THE TRACING WAS GENERALISED. That meant that, as far as Professor was concerned, I do not have ‘complex partial seizures’ at all. She has since described them as ‘atypical seizures’ because they do not follow any special pattern and because they go on for much longer than a normal type of seizure. The fact that I am ‘out’ for many hours at a time, yet still recover somehow, is unusual. But these cannot be considered partial seizures in any form and therefore Tegretol (the drug of choice for complex partial seizures) is the wrong drug for me - and I was put on it 35 years ago. It would seem that something (the Tegretol it must be concluded but cannot be proved) was causing me to have the beginnings of a fully generalised seizure but cutting it off before I actually fell. That episode is the last one that I ever hope to have.

Unfortunately, I had a massive tonic clonic seizure last Friday on the train at Richmond station but we are putting that down to a ‘kindling’ effect from being taken off the drugs some weeks ago and having a number of classic seizures without drug protection. In fact, Professor is very disappointed with this incident and has increased my Epilim dose significantly.

Since coming out of hospital I have been alert and alive for 16 hours a day. For the first week I was rushing around so much that I was hyperactive and too exhausted to eat my dinner at night. I was awake all night for several nights worrying about some aspect of my kids VCE results or plans (quite unnecessary - Thomas has just been accepted into third year Hon’s English; Toby has just got 41 for Group Performance 3\4 and the year 11 literature prize; Catherine came top of year 11 Methods while still in year 10...) but all that has settled down now. I am still very alert and alive. Yesterday I walked down to the Main Street in the heat, up to Coles and back home then made the dinner - which would have been impossible a year ago without suffering a blanking out episode. I am digging the garden, cleaning the spa, travelling to the city...all without any problems.

Is this the effect of the LACK of Tegretol or the ADDITION of Epilim? I see Professor on this week and maybe she can enlighten me.

She seemed to be interested in the combination of Epilim and Lamictal, but I can’t come off Dilantin because my body is immersed in the stuff.

With hindsight I would have listened a bit more carefully to the Professor and tried to hear what she was suggesting. I could have started a new life five years ago. However, I am determined to start it now and even hope to get my driver’s license one day.

I do hope this is of use to you - as you see - it is in no way the fault of the medical profession, or even my own fault really. Diagnosing the less common types of epilepsy is very difficult and they were providing the drug that does most good to most people.

Sue Goss

Epilepsy Association
1300 EPILEPSY or 1300 37 45 37
Australia wide Priority Call