Yesterday after my last post, my friend asked me about medication; does it/doesn’t it help. Medication is a hard one to talk about. So I apologise for the post so soon after the last one, but if I don’t get this out now, I’m not sure I ever will.
Medical advances since GGG Agnes was a sufferer are quite simply phenomenal. I recognise and acknowledge that. But, that doesn’t make what follows any easier.
I’m not going to name any of the meds that I’ve been on and here are my reasons why. Firstly, every medication, regardless of the illness or condition, has a different effect on every person. Secondly, I may take meds, but I’m not a doctor and not a specialist in the epilepsy of anyone other than my own. Lastly, I do not want to worry anyone that the effect a drug had on me, means they are going to experience the same, if they are on the same drug. That is simply just not the case. I will give an example of this. I am a female in my 40s, of a certain weight, certain height, who doesn’t smoke but does drink alcohol. My good friend has a daughter, S, with epilepsy, who is at primary school, who is a certain height ( but still growing), a certain weight (but still growing), doesn’t smoke and doesn’t drink alcohol. (I didn’t feel the need to check these last 2 facts with her parents but god-knows some kids are up to some wild antics these days!) So, it is hardly feasible to think that the same meds in the same quantities would produce the identical effects in myself and S. So, the caveats in place, here goes.
I began my battle with medication at age 17 and it’s continued for over 2 decades. Sometimes I’ve won the battle, but many times I’ve paid a high price and I think meds have the upper-hand in the war we’re in. Some sufferers are pretty easy to control with meds, some sufferers have part of their brain removed and consequently have an easier time with epilepsy, some sufferers can control their seizures relatively well with diet. I am “hard to control”. Some would say in more ways than one….
One of the hardest tricks with anti-convulsants, as with other meds, is getting the balance right for each individual. This is my story. The first anti-convulsant (a-c) I was prescribed was excellent at reducing my cognitive abilities and for causing damage to my reproductive organs. I was told several years later that, as a teenage girl, I should never have been prescribed them. Anyway, one of the side-effects was that my ability to feel pain was reduced. I could be found washing my hands repetitively under running boiling water, seemingly unaware of what I was doing and apparently unable to feel the consequences. I was in a zombie-like state for much of the time and I didn’t know I shouldn’t feel like that, I’m not even sure I knew I felt like that. I didn’t want to talk about epilepsy, I didn’t understand it and certainly wasn’t going to admit I was scared. I tried to hide it, I’ve never been sure how successful I was at that. Other side effects included weight-gain, increased irritability and terrible headaches. It had no apparent affect on the seizures. That drug, for me, was nasty. For others, it’s a god-send.
Fast-forward a couple of years, a few visits to a&e and a change in location. I was assigned to a new doctor. He was brilliant. He helped me begin to see that the medication I was on, was not the be-all and end-all. He explained to me that there was going to be trial and error getting the a-c balance right. He was the first person that I started to trust and then he moved away. I retreated again. I was on a different a-c by this time. I should maybe explain that many who suffer epilepsy are on a combination of drugs, I myself have only ever taken one type to “manage” my epilepsy. There were still side-effects. The worst for me was the weight gain. Like many I’ve struggled for years with my weight and this made the struggle harder but I had to pick my battles. The drug was “cleaner” than the previous one and after several attempts the amount required for me was found – to a certain extent anyway. What happened was that I started down the route of having seizures approximately every 6 months or so. This kind of reduced the fear that it would happen but it was by no means an exact science.
I stayed on this 6-monthly cycle for a few years. Each episode consisted of 2 seizures several hours apart. This was followed by the need to sleep for around 24 hours and then several weeks to shake the residual lethargy. Then the pattern changed. The episodes became unpredictable and I could no longer rely on fitting twice and then sleeping. The injuries sustained with each episode, to me, seemed to get worse. I have many scars and many chipped teeth. My confidence disappeared. I started to recognise, but not admit to, the depression. I was scared all the time. My partner used to say I was “scared of the day I never saw”. He was right. I still am. The answer at the time was to increase the dosage of the a-c and start experimenting with the omission of caffeine from my life. I should probably point out that at this time and throughout my 20s and early 30s I was teetotal. I’ve been through the removal of caffeine from my life several times for the sake of my epilepsy. In all attempts it has proved to be horrendous for me and positively hellish for those around me. Ultimately, caffeine and alcohol, drugs in their own right, have very little bearing on whether I will or will not have a seizure. So, the dose is upped, my weight is upped, my partner cheated and my confidence plummeted. I mention the cheating because sufferers of epilepsy, or any other condition, aren’t just dealing with their illness, they’re dealing with the other parts of their life too. (It might be worth pointing out that he didn’t cheat because I am an epileptic.)Stress is a factor in most illnesses and conditions. I was very stressed and not sleeping much.
Another episode sees me back in hospital. Restrained, because I tried to take out several paramedics and most of the nursing staff. It took several men to hold me down. The force of adrenalin gives the epileptic tremendous strength, it’s part of what causes the immense fatigue in me. It’s tiring all that jerking and fighting you know! In order to try to stop the almost constant fits I’d been administered another a-c, unfortunately this a-c provokes fits in me and things got worse. I tried to leave the hospital, yep you’ve guessed it, in one of those modesty gowns. I fought hard with the male nurse who tried to stop me and my escape attempt was foiled when I had another fit at the top of the concrete stairs that were to be my route to freedom. I didn’t stay at the stop of the stairs and the subsequent bruising was awesome. It could have been worse.
So, another drug, another protracted battle to get a dose that helped, I won’t say controlled because I remain, to this day, hard to handle. The depression, the fear, the weight – all on the up. The confidence plummeting and the acting that everything is ok being perfected. At least that’s what I thought. The veneer is wearing thin. Others saw that. I didn’t. More episodes followed, more trips to casualty, a different consultant, less friends but better ones. I didn’t want to take drugs anymore. I didn’t see the point. Were they reducing the number of fits or were they doing nothing at all in terms of my epilepsy? It was something I had to find out. The fits were becoming extremely irregular and more violent. I longed for the days when I could predict the pattern of the episode and knew it was only going to be every 6- months or so. I’m forever grateful that I don’t have to go through this multiple times a day, every day.
I slowly reduced the dose, my gp supported me, my consultant thought I was mad. However, it was my choice and I had to know. The result was that my fits increased. I knew then that the meds helped but didn’t completely control me. The depth of the darkness that followed that was simply horrendous. I finally admitted that I felt the depression but only to my gp. I couldn’t sleep and I wasn’t a functioning member of society. I withdrew from everything that I could and did the bare minimum to get by. I hated myself. It was 2 years after that, that I was persuaded to try an anti-depressant. I guess I’ll get to that later.
So, fast forward again. After the latest batch of fits before Christmas, it’s still being decided what to do about the meds. I’m waiting for another EEG to see what’s going on with my brain software. Then there will be another consultation as to what to do. There are 3 options. Do nothing; increase the dose; withdraw from meds. More decisions to be made, but I guess I’ll get to that later…Most epileptics I know have gone through a battle with medication. Some battles prove to be significantly worse than others. Unfortunately, the brain isn’t ready to give up all it’s secrets just yet, the genes that are involved in most cases are almost being pinpointed, but not quite. But ultimately, finding a suitable drug-regimen is not a simple one-size fits all. It is trial and error. As with life in general, some trials are more brutal than others and some errors have more significant consequences.
So, you have the basic outline of the battle. I’ve missed some of the parts out and compressed others. The war is dirty, played out in the confines of my brain and the consequences aired in public.