Ripple Effect

Yesterday, I was supposed to have my second CBT appointment; the first one in which I would be receiving active help, rather than going over my medical history. Unfortunately, it was cancelled, and even more unfortunately, because I was getting a lift there with W’s dad, we had stayed at their house, and weren’t at home to get the call telling me that it was cancelled, meaning I found out about 20 minutes before I was due to see him, a short while after I’d arrived at the hospital. I also had a fairly serious seizure an hour or so after we got back, which I’m assuming was related.

It was frustrating, certainly, but these things happen. I would assume it was down to the specialist being ill, and it certainly wasn’t the fault of his secretary that I wasn’t at home, and that my mobile is shortly to be consigned to the bin for not picking up her second attempt to get hold of me (damned thing).

However, it did leave me in something of a worry. Maybe it’s silly – very probably it’s silly, in fact – but I can’t help wondering how long this absence will go on for, and whether I’ll actually get to have my rescheduled appointment in a couple of weeks. After all, this isn’t the first time I’ve had appointments cancelled. Or even the second. We’re getting on for double digits here. I haven’t seen an epilepsy specialist in over a year now – and no, I haven’t been forgotten; I got a letter a few weeks ago explaining she was still unwell, and I would be notified when she returned to work. (How helpful to all the people in the rather large section of the county she covers.)

Absences happen. It’s a fact of life. The fact that I seem have encountered a whole sequence of these in the last few years is most likely some sort of miserable coincidence, too. But part of me can’t help wondering if it is in part the enormous workload these specialists face. My neurologists see patients with problems ranging from tumours and trauma to epilepsy, Parkinson’s disease and dementia. Their workload is immense, and there are too few of them. My first epilepsy nurse told me we in the UK have about 30% of the neurologists that are really needed for everyone to have appropriate access. Now, that’s an old anecdote now, but I would imagine there are still far too few. Neurology is a wide field, and they are expected to both specialise in one area, and give appropriate advice to the full range of patients their department sees.

Likewise, Epilepsy Nurses must fill the gap for patients with epilepsy, which is, after all, the most common neurological condition in the UK. I don’t know how many patients are currently waiting on the books of each epilepsy nurse in the country, but I would expect the number to be substantial. How many people can keep up that kind of workload forever? My epilepsy nurse would always go over time with her patients. It meant that if you had an appointment at the end of the day, you could go in an hour to so after the appointment was supposed to start, but it also meant that she worked past the time she should have been going home, pretty much every day. And she happily gave patients an email address to contact her if they had a problem. She also covered four or five major towns in a week; a different one each day.

According to my latest specialist, non-epileptic seizures are more common that epileptic ones. They are harder to control, too. How large is his workload? Is it so strange that I worry about him going sick long-term too, when this is the enormous burden of patients that people such as himself have to work with every day? Admittedly, my health condition is related to stress, so I’m possibly not the best person to say this, but honestly? That kind of pressure is something I couldn’t even conceive of coping with. Isn’t it time that neurology got more attention and funding?

Advertisements

Self-Doubt

I’ve had some time to think about my appointment with the neurologist now, and to be honest, I’m more confused than ever. I went into the appointment somewhat resigned to having new tablets lined up in front of me, and I walked out with a completely different answer.

I knew before that not all of my seizures were caused by epilepsy, and hey, I can cope with that, even if every doctor ever seems to give me a different explanation for the phenomenon, and a different name. So far the one common label I’ve been handed (amongst a myriad of differing descriptors) is “dissociative seizures”, so I’ll stick with it for now, although I have no idea if that gives the condition I have a name at all. The impression I got the other week was that this whole aspect is a dawning revelation to the medical profession, having arrived only in the last few years. I’ve yet to brave google with any real seriousness and try to find out much more than a basic descriptor.

I guess the trouble I have with the latest prognosis – and I’d like to stress that it is a minor trouble – is how this will affect the way other people view me. At the moment, I still have the “epilepsy” tag hovering around me – that first EEG had its pesky unusual activity associated with a myoclonic jerk (the one seizure type which has pretty much stopped since I started taking Keppra). For that reason, the neurologist doesn’t want me to stop taking the tablets yet, even though I am probably taking far more than is necessary to stop what I used to call my “twitches”. But I walked away (stupidly, really; I was caught up in the excitement that I might, at last, have an “answer”) without actually knowing what is “wrong” with me any more. Do I really have epilepsy? Don’t I? Am I just suffering from a dramatic reaction to stress? I should have asked her to clarify what this would mean about my current diagnosis. Was I misdiagnosed? Or was the emphasis just in the wrong place? Where do I stand now?

None of it makes me feel particularly good about myself at the moment. I mean, I guess I’m reasonably sure I actually do have epilepsy, because my notes mention an EEG picking up “spike and wave” activity, which my epilepsy nurse told me was very typical of an epileptic myoclonic jerk. So the good news, I guess you could say, is that it’s looking increasingly as though the epilepsy side is pretty darn well controlled. The bad news, of course, is that what’s left is looking unlikely to have a simple solution such as the right medication. As long as it might have taken to find the right combination of drugs, that hope was there. Dealing with something that is entirely psychological is different, and far less predictable. My life isn’t exactly short on stress, so I’ve got my work cut out for me.

The other thing which worries me is the perception of it. Epilepsy is misunderstood, but telling someone I have seizures which are not even identifiable as that? I’ve had people accuse me of “faking it” before, as though I’m some masochist who enjoys injuring myself and sabotaging my hopes of having a stable job. As awful as epilepsy is, at least it’s a known and medically (if not casually) understood thing. Now I’m looking at something which is altogether more tenuous and indistinct, with its causes and mechanics still not fully understood. Suddenly I feel even more vulnerable. This seems to have all the disadvantages of epilepsy – involuntary seizures, no driving, massive, regular interruptions to my lifestyle – but with none of the explanations that can help me, and those around me, really understand it. It’s not a recognised anything it seems. There’s now a hugely irrational part of me wondering: “What if everyone just tells me to chin up and stop mucking about? What if they don’t believe me when I say I can’t help it?”

I think I really need to see this specialist. Next time, I’m going in with a checklist, and I’m going to come out armed with as much information as I can muster. I can’t live with all these maybes hovering around me. I just want to know what’s wrong, and what I can do to try and “fix” myself.

Why I want people to Take Epilepsy ACTION

Well, I do have news, but I’m afraid it’s going to take a back seat to the main thrust of this post. You see, today, Epilepsy Action launch a new campaign – Take Epilepsy ACTION – to promote awareness about the different types of seizure that exist, and what first aid is appropriate.

This is, obviously, something that is very important to me. Epilepsy Action commissioned a YouGov survey which showed that almost 9/10 people would not know the correct thing to do if they saw someone having a seizure. A significant portion of people would actually do something which could potentially harm the very person they were trying to help.

Now, given that Epilepsy is one of the most common neurological conditions in the world, that’s a pretty shocking statistic. It’s about time that the correct information was widely know, as people with epilepsy have had to face public misunderstanding and discrimination for a very long time.

The link above goes to the main campaign page for the Take Epilepsy ACTION page, and contains a short video demonstrating the correct first aid procedure, as well as how you can help. But I want to repost here the ACTION message to remember if you see someone having a tonic-clonic seizure (where the person is unconscious and convulses – the “typical” seizure):

A Assess
Assess the situation – are they in danger of injuring themselves? Remove any nearby objects that could cause injury 
C CushionCushion their head (with a jumper, for example) to protect them from head injury
T Time
Check the time – if the seizure lasts longer than five minutes you should call an ambulance
I IdentityLook for a medical bracelet or ID card – it may give you information about the person’s seizures and what to do
O OverOnce the seizure is over, put them on their side (in the recovery position). Stay with them and reassure them as they come round
N NeverNever restrain the person, put something in their mouth or try to give them food or drink

Remember ACTION, and call an ambulance if you have reason to believe this is the person’s first seizure (if you cannot find an ID/Medical card or jewellery, if the person has a second seizure without recovering from the first, or if the person is injured. 

Now, on to my news. I had my neurologist’s appointment yesterday, (finally!) and it has certainly given me food for thought. She thinks that the seizures I am having at the moment are all non-epileptiform attacks – in other words, they are all the dissociative seizures. This is because I have had video telemetry showing that I do have this form of attack, and the majority of EEG tests I have had show this pattern. In other words, all the drugs in the world aren’t going to fix my current problems.

I’m still not entirely sure how I feel about all this. I haven’t been told that I don’t have epilepsy – the first EEG I had did show unusual activity, and she has told me to carry on taking my medication for now. But it looks more and more like the Keppra is taking control of the epileptic seizures, and what I am left with are the dissociative ones, which are caused by, surprise surprise, stress. I’ve been referred to a different specialist, and will probably be referred again for some CBT.

I do feel a little up in the air about it all. While I am happy to go with the neurologist’s opinion, especially as there is some evidence to back it up and there’s a chance of “fixing” the problem a little, I’m not entirely convinced that all the seizures I’m having are dissociative. Many of them, yes, do fit that pattern. My non-convulsive seizures are all rather similar to each other, and these are the type that was captured on the video telemetry and recognised as dissociative. But I have never had one of my (much) more convulsive seizures while wired up to an EEG, so I’m left in limbo wondering which category they fall into. I guess time will tell. If the CBT doesn’t stop them, then I’ll know it’s more likely they are epileptic. Still, they are certainly the least common of my seizures now, so I don’t think they’re the priority at the moment.

Darn.

Well, I lasted two days this time. (There is hope yet, yes?) No seizures yesterday or the day before. I did have a couple of auras, but they didn’t develop into anything, and while I would normally count them, things are bad enough at the moment that auras have slipped off the radar. I’ll count them more when I don’t have the beggars  three or four times a day. I’d spend my life writing them down otherwise!

 I did have a weird occurrence this morning though. I almost fainted – collapsed in fact, but didn’t black out. it was over almost as soon as it started, but I honestly have no idea what it was. It didn’t feel much like a seizure, but then, what else could it be? I was very tired though, and had a lot of trouble getting to sleep last night. It could have been that I guess.

The tiredness is also probably what caused the seizure I had this afternoon. O had just thrown a whopper of a tantrum and I had successfully calmed him down by carrying him up to his room (hooray, it worked for once!). We were just discussing colour, and how it all works – there was a great deal of oversimplification and anthropomorphising on my part, but whatever it takes, right? Anyway. Sidetracking. I felt crap, and sent him down to W while I went and weirded out on the bed for a while.

I also made the mock-up of my skirt today. Now I just need to come up with some sort of waistband, take it in at the appropriate points, and cut out the actual material. Hooray! Still, with only 28 days do go, I should blooming well hope I am making progress.

…Still more worried about having a seizure and ruining the day for W than about the actual wedding itself. I guess we’ll see, won’t we. At the end of the day, there’s nothing much I can do about it either way. I just keep on taking my tablets, noting the seizures when they happen, and hopefully the neurologist can offer me some hope in  a week or so when I (finally) have my appointment. <insert deadpan laugh here>

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!).

An Open Letter – asking for help, really.

This is an open letter to, well, anyone who controls budgeting in the NHS really. I will be copying the bulk of it and posting it off to my local branch of PALS (the Patient Advice & Liason Service) and the board of trustees at my local hospital, but if you can think of anyone else who might be able to help (or think I need a major rewrite!), please let me know. Anyway. Here we go (blanked out the name of my local hospital and Neurologist as this is online, the names will of course be in the printed letter):

Dear Sir/Madam,

I am writing to complain about the Neurology services at my local hospital, specifically the continued absence of one of the consultants in the Neurology team and the lack of clinics which has resulted from this. I am sympathetic to the fact that Mr XX has been ill for over a year now, and understand that illness is not something which can be overcome immediately. However, the lack of a temporary or permanent replacement to the Neurology team means that I have not seen a consultant Neurologist since November 2009 – a period of 19 months.

I recently received my third appointment cancellation, which requested that I phone the hospital to rearrange my appointment once again. When I rang the neurology department I was advised that at present there were no clinics available for patients of Mr XX, as he remains on sick leave.

I have uncontrolled epilepsy, and my condition fluctuates from month to month. At the time of writing I have seizures that occur between daily and once or twice a fortnight, which causes a significant interruption to my life. My condition has worsened considerably since my last appointment with a consultant, and this is obviously something which I am desperate to discuss with a specialist, as it affects my ability to live a normal life.

I also have two young children, both below the age of four years, and as a result of the nature and frequency of my seizures, my partner has had to take on the role of full-time carer to supervise me whilst I am looking after them. This has obviously had a great and negative impact on our family as a whole.

I am writing, therefore, to request additional clinics to be held at my local hospital for neurology patients. I am aware that I am “not the only patient” in this position as I was informed when I registered my dissatisfaction with the situation with the appointments department, but as this means that presumably there are many other patients with neurological complaints that have not seen a consultant in well over a year, surely this warrants the funding of additional clinics to help those patients. Neurological complaints often require specialist attention, and can have a profound affect on the patients’ quality of life. They are also often very serious in nature and require constant monitoring. The interruption in my ongoing assessment and lack of access to the tests which only a consultant neurologist can refer me for has had a very negative effect upon myself and my immediate family, and will likely have had similar effects upon that of the numerous other patients who were also under Mr XX’s care.

I have sent a copy of this letter to the PALS, in the hope that they can direct me to an appropriate course of action to secure treatment for myself. Please understand that I appreciate the awkward situation the ongoing sickness of a colleague can present – I have been that colleague myself, more than once, when my condition worsened to the point that I could no longer work.

Yours sincerely,

J. Hill

Epilepsy Nurse

It’s days like today that I realise how lucky I am to be living where I do. I have access to an epilepsy nurse specialist who I see approximately every six weeks (I did get a little lost in the system recently and not see her fro some time, but mostly it is that often). When I was first diagnosed, I just accepted this access as normal, especially since there are so few neurologists nationally, (the waiting times can be over six months) and they can take the pressure off these consultants so well. But as it turns out, not everyone has access as good as mine, which I find quite ridiculous, given how common (and complicated) epilepsy is, and the necessity for freqent medical consultation that many with epilepsy need in order to balance medication and maintain control over seizures. For example, today my epilepsy nurse and I discussed lowering the amount of medication I am taking, to reduce any possible side effects (ironically enough, one of the potential side effects listed on some anti-epileptic drugs – AEDs, as they are often abbreviated to – is convulsions). If I had to wait for a neurologist to approve each and every change, I could be years doing this. Literally. I last saw my neurologist in November, and I am scheduled for my next appointment in, wait for it, April.

That’s a 17 month gap between my appointments, admittedly because my specific neurologist has apparently gone on long term sick leave, but still, the point stands. A medical professional once told me that here in the UK we have about 30% of the neurologists we really need, because the “speciality” is so vast and has so many different areas to cover. A typical neurologist can be called on to diagnose epilepsy, treat patients with brain tumors, those with persistant pain or migraines, parkinsons patients; anything involving the brain really, which is a huge area. Most tend to specialise somewhat in one particular area, which means that when you see a neurologist, you might not be seeing one who has much of an intrest in your condition. I know that my neurologist didn’t actually know all that much about epilepsy (for his profession at least, he still obviously knows enough to be competant).

I had another seizure today, too. Just before going in for my appointment as it happens, which was almost a good thing. It was still bad that I had a seizure (and rather annoying, too), but at least with my epilepsy nurse there, no one panicked and started calling ambulances or anything like that. I’m lucky in that I have never seriously injured myself during a seizure, although lots of people do. The worst I’ve ever done is a toss up between knocking my head rather hard and scratching my face enough to leave marks for a few hours. So for me, calling an ambulance just leads to a lot of fuss and bother, a cannula being plumbed into my arm, a needless trip to A&E, and then the hassle of trying to get home again when I come round enough to convince the nurses I’m actually fine. If you ever see someone having a fit, check to see if they have a medical bracelet or necklace. Unless a fit has been going on for more than five minutes, or they’ve stopped breathing, in most cases you don’t actually need to call for help. Just make sure they don’t hit their head and, if possible, put them in the recovery position. Oh, and never put anything in their mouth. Ever. You can’t swallow  your tongue during a fit, but you can choke on things that people put in your mouth.