Withdrawl

Well, I am officially not taking Clonazepam any more. On my GP’s advice, I have weaned myself off, and tomorrow (Monday) I shall take the remaining tablets back to the pharmacy.

It was a nice try, I suppose, and it could have helped, so it was worthwhile. It’s still a little frustrating to be back to square one, especially after all the trouble I went through while taking them (including having a seizure out in public on my own which could have ended rather badly as it happened about twenty seconds after I crossed a busy road), but, with a little hindsight, I know that I run the same risks when I start taking any new medication.

There isn’t a cure for epilepsy, and there possibly never will be. There certainly won’t be a cure for my kind of epilepsy in my lifetime. All I can really do is to try and stay positive, and not get so worked up on the negative stuff, as I have been doing lately.

Still, it’s all very well me saying that. I’m human, I expect to write ranty posts in future expressing my rage and frustration at the world. I’d be a bit creepy if I didn’t. I also believe that sometimes it’s only by getting angy and taking action that we get anywhere. It wasn’t until I got fed up with being fobbed off by the hospital delaying my neurologists appointments indefinitely that I got my appointment in September. It wasn’t until I get cross with the Epilepsy Nurse’s team that I rang up to work out what was going on and realised I’d been mistakenly dropped off the list. Sometimes, being calm and taking things in your stride is the wrong thing to do.

Still. The important thing is to strike the right balance. I’m not going to let my epilepsy bully me into sitting at home all day, afraid to go out, as I have been these last few weeks. Nor am I going to just say “to hell with it” and start running risks, because that would have serious repercussions for myself and my family. I do think i need to take another look at what I do with my time though. Taking these new drugs and seeing how much worse my life could be (how it was before I started the Keppra, essentially), has made me want to be more productive with my time. I’ve been wasting a lot of it recently just moping, and that isn’t doing anyone any good.

Musing

Well, I’m going to stop taking the Clonazepam. Goodbye short, annoying venture into new-drugs territory. Hopefully when I get to see the Epilepsy Nurse on the 9th August she’ll be able to give me some more advice.

I guess it’s frustrating me quite a lot, because I did all the right things, and it still went wrong. I have a problem with my high seizure frequency, I pulled out all the stops trying to get a solution – and I got given one! – but it didn’t work, and now, here I am, back to square one.

Still, on the bright side, at least it’s one more thing I can jot down on the list of “things not to give me if you want me to be well”. Surely one of the epilepsy drugs out there has got to work, right? And by trying them all, I can only be closer to finding the one that does? Please?

Medication Chaos.

So, I started taking Clonazepam the other day. Hooray, I thought, finally I get to do something positive to help myself.

Well, so far I have had two (perhaps three, my memory is failing me worse than usual at the moment) major seizures, and am experiencing a lot of anxiety, erratic behaviour and cravings for cake, chocolate, sweets, sugar, and food in general. Now, the latter part could be to make up for the energy I am expending having my seizures, which have gone back to being quite violent and forceful, and far longer in duration than they have been.

I have also been much drowsier than usual, and apathetic about a lot of activities which usually would hold my interest. Now, I appreciate that taking a new medication for epilepsy is different to taking a paracetamol. You have to give it a few days or even weeks for it to get properly into your system and have its proper effect. They have a long-term effect, so you can’t really expect results overnight. But, so far, I think its safe to say that my reaction to this particular drug has been a somewhat negative one. W agrees, and wants me to stop taking it.

Did I mention hat despite it making me drowsy, I am finding it hard to go to sleep at night? Last night I sat up jotting down ideas for a story because I couldn’t switch off when I lay down to go to sleep.

I feel tense, too. Jittery and on edge, and wanting to do things right away if I have to do them at all. I want to lie down under the bedcovers and not come out, but in the same breath I could u on a pair of shoes and go for a walk and not stop and not turn around and as I type I can feel by brain working faster and faster and faster. Hence the long sentences. It is notoriously hard to convey how it feels to have a seizure if you have never experienced it four yourself, and I am finding even harder to convey the sense of duality that I have right now. I find myself being influenced by everything around me – I am very suggestible. My MP3 player is playing music of a slower tempo now, and I can feel myself slowing down slightly – I no longer want to go out and run and run. However, I am aware that if I were to listen to something with a fast tempo I would be sat here drumming my fingers or tapping my feet and gettting irritable and impatient at all the people holding me back from my true potential, which is to walk and walk and not stop going until I fall down and go to sleep, wherever I am by that point.

DOes this convey something of the chaos that mind-altering prescription drugs can have on a person, and how utterly disruptive it is for a person with epilepsy, (or depression, anxiety or any other brain-centric condition for that matter ) to change or amend their medication? Could more people read this, and understand the dread I have right now about both taking and stopping this medication, about telling my doctor who will prescribe more drugs, and about the long, long wait I will inevitably have to get any progress which helps as opposes to hinders me? Because I don’t think people do understand to be honest. You say “epilepsy” and people go “Oh, that’s seizures, right?” And they assume that either you have seizures a lot, which is bad, or that you “take tablets for it” and magically everything has gotten better.

It doesn’t work that way. Here I am. I have epilepsy, I take tablets for it, they don’t work very well, and now that they are trying new tablets, they are making me feel a whole lot worse, and a whole lot more nervous about going out of the house, and the prospect of having to carry on each day this way and somehow raise two normal children is, at this precise moment in time, terrifying me. It won’t scare me later. I know that, because there is still a core part of me that, for some ridiculous reason, has this unending hope that somehow everything will turn out okay, because it always has in the past. I’m one of life’s optimists, I guess. That’s probably just as well, if I’m honest. It keeps me going through the bad times, and makes me, frankly, damned irritating when I’m having a good day. Still, W apparently loves me all the same, and he’s been giving me lots of hugs in the wake of my seizures. I may update a little erratically for the next few days, depending upon how I feel.

Progress…Sweet progress? (Part 2)

(Part 1)

Well, one pre-school collection, lunch break and seizure later, I was off to pick up my new prescription. It was Clonazepam. And what does it say on the info sheet? “Do not breastfeed while taking Clonazepam.” Well, that’s just great then.

It’s a tricky one. I’m fairly sure my GP would have told the neurologist that I was breastfeeding, as it was something that I made a point of telling him. But I don’t know whether he did, and the neurologist decided that it will be okay because I’m taking a low dose; whether he told her, and she didn’t notice it in the e-mail, or whether he simply forgot to mention it because the focus of his message was my high seizure frequency and the fact I won’t be able to see a specialist for quite a while.

The info sheet states flatly that you should not breast feed while taking Clonazepam, but there is information about the drug online which says you should talk to your prescriber before taking in those circumstances. So, it could be any of the above scenarios, and I just don’t know which. Given that I had another seizure today, it has put me in a bit of a fix.

Given that communicating with the neurologist would probably take a few days, my next step was calling the helpline that Epilepsy Action run. As ever, very helpful and friendly, and an absolutely minuscule wait for someone to pick up. I honestly can’t recommend them enough if you have an epilepsy-related issue. The woman I spoke to wasn’t able to give me a definitive answer as to whether it was safe or not, but she did give me the number for the UK pregnancy and epilepsy register, which will almost certainly prove a useful resource.

Unfortunately, when it comes to the risks associated with breastfeeding while on anti-epileptic drugs, it really is just a case of checking with doctors, as every case is different. What is a worthy risk for one person would not be justifiable for another. In my case, M is naturally feeding far less than she used to, and my seizure frequency is quite high. It could well be that given those specifics, the neurologist felt that taking the Clonazepam would be the best option. Either way, on the advice of the helpline (and, it must be said, W, who advised this from the start), I have now phoned my doctors’ surgery, and am currently waiting for my GP to get back to me and confirm whether or not I have the go-ahead to take this medication.

Based on all that I have learned, I am hoping that I’ll get the green light and be able to at least try the new tablets. Although, the list of possible side effects sounds remarkably like a description of me on a bad, seizure-filled day, so it might all become moot anyway.

Well, fingers crossed, eh?

Progress! Sweet progress! (Part 1)

Well, I got a call this morning at about…a quarter to eight? It was my GP, calling me to let me know that the neurologist they e-mailed last Friday replied that evening, and said that although she would need to see my full medical history to know what would be the best thing to do, going on what the GP had told her about my current situation and the form of epilepsy I was diagnosed with, she recommended that I take a new medicine, which I have helpfully forgotten the name of. It began with a “C” though, so having looked through the UK anti-epileptic drugs list on Epilepsy Action’s website, I think it was clonazepam. I shall come back later when I have picked up the prescription and correct myself, I expect.

Either way, I was quite impressed that, firstly, the neurologist responded so quickly, and secondly, that the GP got back to me very promptly as well. He actually apologised slightly for calling as early as he did – he didnt say as much but I expect it was so that he could get the call over and done with before his appointments for the day started, as my GP surgery offers appointments from quite early in the morning. Either way, I was up anyway. I usually am. Small children aren’t exactly known for their late sleeping habits (more’s the pity!).