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.

Late Nights

It’s one o’ clock in the morning. (Thereabouts.) Normally, by this point, I would be asleep.

However, seeing as I’m not, I thought it a good opportunity to continue the musings of earlier, to the relaxing sound of Brahms’ Lullaby on repeat (courtesy of YouTube). M won’t go to sleep, you see. It’s a modern parenting thing, honest…

Anyway. Yes, musing. I think the chief difficulty is that there is so much that I need/want/crave to be foing outside the house at the moment, and 95% of it is on hold because I am still having seizures daily. The one I had earlier involved a lot of what, were I religious, could be described as speaking in tongues. I apparently told W that I itched inside, and wanted to run and run. I probably also told him a great many other ridiculous things, but the running part sticks in my mind.

I had planned to run in the Race for Life this year, until the Gall Bladder episode put an end to that. (Still, next year, eh?) I planned to do a lot of outdoor activities, including buggy walks, taking O and M to the park, walks along the river, that sort of thing. Instead, I am sat here most days, inside a fairly small house, with everywhere and yet nowhere to go.

Leaving the house is like an expedition to the Sinai sometimes. Have I got my bag, yes. Coat? Phone? Am I feeling okay? Keys? Epilepsy card? Am I sure I’m feeling okay? Do I need an umbrella? Have I got the changing bag for O/M if I am taking them? Am I really really sure I’m okay? And I’ll only be going straight to that one shop and then home again, right? And I’ll have my phone on and in my pocket, and will answer it this time, right? Right? Okay, then out the door, no stress, no pressure, just going for a quick jaunt to one shop and one shop only and then straight home again before I fall down and start telling people the sky is green and pink at the same time. (No, seriously, if you are nuts enough to look at the sky on a clear day for long enough, this optical illusion actually happens. Blame my sixteen-year-old self for being boring and not kissing boys.)

The whole palaver does make me reluctant to go out though. It gets to the point where it’s just so much hassle, even for things which are relatively run of the mill, such as taking O and M to parent and toddler groups. Some days I just can’t muster the enthusiasm. It’s just another day, just another group, and tomorrow I’ll be just as incapable of doing things other people take for granted, like being spontaneous.

I bought myself some cheap earrings today, just because I was walking past the shop and there was a sale. I honestly can’t remember the last time I was out in town and I just decided to go and buy something like that, and W wasn’t there with me, being all manly and not understanding window-shopping at all. It was just a few precious minutes, but it was for me, and it was spontaneous.

I miss that the most, I think.

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?

After a Seizure

Well, I meant to write this one yesterday, but to be honest, my head was a little all over the place for the rest of the day. I seem to spend a lot of time in bed at the moment, having that “coming round” sensation. I’m sure W must be sick of me asking him how long I’ve been upstairs when I stagger back down in search of tea.

The trouble is, I really hate losing track of time, and I’m not usually in the right state of mind to check a clock or my watch before having a seizure to make it easier for me to calculate later. And a lot of the time, I really want to know how long I was “out”. It’s a control thing, I think. I have no control over how long I will be having an aura or seizure, or how long it will take me to sleep one off. But I feel as though if I know how long it all took, I can account for that time, and it isn’t lost to me. Instead of yesterday being a haze, it becomes something I could plot on a graph. So, from time A-B, I was fine, then C-D I was having a seizure, E marks the time I was sleeping it all off, and suddenly the day makes sense, rather than just being this fog. Suddenly I am in charge again. The fog lifts, and with it the feeling that I am not in charge of my own life.

I don’t know why this matters to me to the degree it does – for some seizures I will literally sit down and try and account for it all, blow by blow: “Well, first I fell over, and then my eyes started to roll, and then I felt my arm twitching…” and throughout that my mind adds in “Oh, and at that point I heard W say something to me and I felt him move me”, or “And then I heard O talking in the background”. I’ve written accounts of my seizures before in their immediate aftermath in a desperate attempt to claw back the time that I’ve lost. I will not let the seizure take that memory away, even if the memory is me falling off a chair and really hurting my head, or of going loopy and scratching my face or pulling my hair. Good memories, bad memories, they are all facets of myself, and I lose enough of them as it is. Sometimes I need prompting to remember things, sometimes I don’t remember events even after being told, flat out, what happened. Those are the bad times.

I think the problem stems from the fact that I have a pretty good long term memory, but my short term memory is, well, crap. If I can file things neatly away into the long term storage, so much the better. Forgetting things is something that terrifies me. I have notebook after notebook detailing the events in books I am writing, and countless documents stored on my computer, my email account, other people’s computers. Data loss is a potent threat to me. Somewhere, hopefully still in a readable condition, I have a folder containing stories I wrote when I was twelve. They all last about a paragraph, and most of them contain…well, nothing of note. But I still wrote them, and I hold onto that chance that I may look back at them and get a spark of inspiration that will spur me on to write a new story, a new character rising from the old. I haven’t really gone into the other aspects of my life, but writing is something that I find really important. And it’s something else that happens to be mostly centred around the activities of my brain.  So maybe it isn’t so strange. After all ,when I write, I am in charge of everything. Nothing happens without my say so. There are no power outages, no short circuits. Everything happens for a reason, and it happens at its allotted time in the plot. I don’t have that kind of control in real life any more.

Okay, so no one has that amount of control in real life. But I think the point still stands. I cling to my obsessive desire to know what happened and when because it represents my attempt to have the one thing I lack the most at the moment. Control.

During A Seizure (pardon the rambling, my brain does this to me at times)

Well, more or less. My head isn’t exactly screwed on straight at the moement, so please pardon my spelling mistakers and typos . I’m not going to go back and fix because I don;t know how long I have left before this pretty strong aura goes into a “full” seizure and I loose motor control.

My head is pounding, and wallking up to my bedroom and bed (where I am now, so don’t worry that I will get hurt) I was very wobbly indeed. I was angry too, but that has passed now and I just feel woozy. But the angry part- that must be expalined. I was out and about with W, taking M for her 1 year jabs. All done, she was fine and hardly cried at all! then we had to get wipes for her and some ceral bars whiich she really likes. W started telling me we needed to go home right away because I was ging to have a seizxure but I felt fine, so I got grumpy and insisted that we ogo got to M&S for cake. I like cake a lot right now.

So we got the food, and some rolls for lunch, and socks for O, and then I started to feel crap, and I got cross with W (Oh wait, I had been cross before) because it just isn’t FAIR. There is so much I want or need to do that is out of the house and the way tjhings are right now the only safe place for me is in the house and I just want to get out.  And W keeps teelling me “you’rtregoing to have a seizure” and he’s right and I’m not cross at him, I’m cross at what he has to do which is look after me. I don;t want to be looked after. I want to look after myself, and go into town and decide, me, when I am fed up and want to come home and not miss things off my to do list because I am in bed miles away from my head.

That is the angry. But not the tunnell vision is growing again, so if you’ll excuse me, I htink I am going to lie down now and let this seizur get itself bloody well over and done with, I meay come tidy this up later. ir not. OR not, that is. My eyesare rolling, it’s time to post.

Now can someone see that not all seizures are switch on, switch off?

Papering over the cracks

It’s day six of my new medication. Yes, I’m still taking it. W and I had a real think about this last night, and decided that I will continue to take them until Monday, when I shall make an emergency appointment with the GP. This is mostly due to the fact that on the information sheet, one of the first instructions is not to suddenly stop taking the tablets as you may get withdrawal symptoms. I’m not entirely sure whether I have been taking these long enough to qualify for that, but I’m taking no chances.

Not to mention, W and I also discussed the possibility that these symptoms I am having are a passing problem as I adapt to the medication. This is, frankly, becoming an increasingly unlikely scenario as far as I can tell, what with me having had a seizure almost every day since I started taking them.

Either way, I’m still here, still in limbo. Will update when I know what, if anything is happening.

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!).

Well, touching wood doesn’t work then…

There are some days when I feel I am doing really well. I don’t think it would be fair to call today one of them, if I’m honest. I’ve had two seizures today – one of them a lot worse than my usual ones these days – and it’s kind of stained what should be a special day for M; her first birthday.

The first one wasn’t so bad. Well, I didn’t make it upstairs, so I had the seizure on the floor, but really I just felt rather… other for a few minutes, and then came back to normal. My eyes were really flickering, and I had a weird urge to roll around on the floor, which I managed not to do (thank goodness) as I was alert enough to bear in mind my wounds, but when it was over the recovery period wasn’t that long.
We opened presents and cards, O got a bit distressed by all the attention not being on him (in fairness, he’s never had a younger sibling’s birthday before), W’s parents arrived and we had lunch, did the cake… and then I felt weird. W had been saying about an hour previously that the way I was acting, he thought  I was going to have a seizure, but I brushed it off as an overreaction because I honestly felt fine, and didn’t (as I usually do) get all defensive and deny it wildly. Mostly, if W points out that he thinks I’m gonig to have a seizure, I start second guessing and worry that I will, or I do nowadays, at any rate. This time though, I think I had actually rolled my eyes, and dismissed it out of hand because I felt fine. 
So, when I sat in the chair, arms and legs twitching (and the remaining nub of conscious me panicking that I was going to rip my incisions open), with eyes rolling, teeth bared and tongue making clucking sounds, you will understand why I was rather shocked. My belly button really ached afterwards (I think I wrenched the whole area a little), and when I came round I couldn’t speak at first, and I was shattered. I had to go upstairs, still feeling more than a little woozy, and I pretty much instantly fell asleep. I slept for about half an hour, apparently, and came back downstairs just in time to say goodbye to W’s parents. Cue guilt.
So, at about half four this afternoon I rang the GP and epilepsy nurse, and talked over my options. I won’t get to see my epilepsy nurse until August at the earliest as she’s still sick (it figures) but I have asked for the nurse who covers the neighbouring part of Kent to give me a call on Monday because I need to speak to someone. And my GP has offered to write an email to a neurologist to try and get some advice on possible medications I could try so I don’t have to wait until my appointment in September. Still, it doesn’t change the frustration I have that there’s nothing I can do right now to help myself. I just have to sit tight and hold on. Hopefully someone will have an answer for me, because I’m at a point now where my seizures are worse than they’ve been since I started taking the Keppra four years ago. The most frustrating thing of all is that I can’t work out what has happened to make things change so dramatically.
Right. I’m not going to sit here and stew on this. If I don’t stop now I’ll sit and tie myself up in knots trying to think of triggers or patterns. Focus on the good – ongoing celebrations of M’s birthday. I’ll be damned if this is going to overshadow that.