I wasn’t entirely sure that I should write a post about my recent two week hospital stay. It’s undoubtedly going to be a controversial one. During the admission I had a relatively traumatic experience with one ignorant nurse. It illuminated two complex and utterly humiliating issues which those of us with complicated, intractable focal seizures must negotiate when met with uneducated staff.
Firstly, what I’ll term “seizurism” and secondly, addict insinuations.
I agreed to the admission after three weeks of escalating nightly focal seizure clusters, followed by a twenty minute focal seizure with speech arrest in the street. I agreed to the stay, at my neurologist’s hospital, because I trust him implicitly and have had very supportive experiences on the hospital’s public ward in the past. I could have been placed on a seizure specific ward across the city, in my epileptologist’s hospital. But surely the staff on any neurology ward would have encountered complicated epilepsy before and been able to treat it respectfully? Be capable of helping me break the cluster cycle and finally get some sleep?
Well that wasn’t to be the case on this particular admission.
Although my neurologist was, as always, wonderful, he wasn’t always present. In his absence, across one weekend, I was in the care of a night nurse who clearly lacked knowledge of complicated seizure disorders.
It emerged at this time, that there was a mis-charting of my medications. While I typically use rescue medications on an ad hoc basis in correlation with seizure frequency, my chart reflected I was to receive only one 1 mg dose every 20 hours. A dose that I’d reached tolerance level on before even entering the hospital. It seemed that the nurses who’d been bringing me subsequent night doses during the week, had done so after confirming with a ward doctor on duty.
Now, I feel I need to precede certain observations in this post by stressing that I am capable of generalizing with the best of them. I’ve had some nasty tonic clonics in my time. I understand how dramatic they must appear to a medical professional and how urgent the need for intervention can be prolonged episodes. Equally, I fully comprehend how torturous they are to experience. I have experienced status epilepticus. I have come round many times with bloody noses, split lips and in agonizing muscular pain. I am grateful every day that my tonic clonics respond to medication. Therefore, this post is not diminishing the severity of this seizure type in any way, but highlighting certain specific prejudices that can accompany problematic focal seizures.
I’ve spoken before about the right-sided motor seizures that originate in my left frontal lobe. If I were to explain their appearance to you, they are something akin to a tonic-clonic but occurring on only one side of my body. Essentially, repetitive stiffening and contraction of the muscles, very obvious convulsions. They do not inhibit consciousness, but can cause speech arrest. They typically come in frequent bursts of 30 secs, clustering rapidly. With sleep deprivation, they eventually move towards something like a focal status epilepticus and transition from being nocturnal to occurring at any time of the day.
They might sound innocuous, a 30 sec burst can’t be that bad, right? Wrong. They’ve floored me in the street. I’ve injured myself in the shower. I’ve needed to carried out of my house by FOUR paramedics (the seizures were so powerful they were concerned I’d kick a paramedic down the stairs on a traditional stretcher) as they occurred every 1.5 minutes for over 2 hours.
The refusal of this seizure type (and several other of my seizure types) to respond to traditional anti-epileptic drugs means I need to medicate with benzos at very early points in the cluster cycles to avoid sleep deprivation and escalation. I understand this, because I’ve been doing it for nearly twenty years. I have observed these seizures in every circumstance; I have made the right choices in timing rescue medication and the wrong ones.
(PC Epilepsy Avocate)
So, with this background in mind, on my first night with her as my nurse, my laughable 1 mg of clonazepam wore off after 2 hours. I awoke with several sharp bursts of seizure activity. She eventually responded to my bell and refused me further medication. I asked for a doctor. There was none on the ward, apparently. And I knew, right then, that I was escalating.
It didn’t help that I wasn’t on an EEG monitor or video and, therefore, self-reporting seizures. I was in a room of four beds, which on that first night had only one other patient in it. The nurse in question poked her head into the other end of the dark room infrequently, standing momentarily about 8 metres away from me. I had three blankets over me and was seizing only in bursts. She couldn’t possibly have been able to tell whether I was seizing or not, especially with such irregular checking. Any time I rang the bell, the seizure was over before her she arrived. I gave up on reasoning with her. I slept very lightly for about three hours, frequently awoken by the seizures. I believe there were 26 seizures within those three hours.
As the night had crept on I was so exhausted that I had given up on reporting them. I could feel it, her “seizurism.” Her attitude that a focal seizure was essentially a non-event, it wasn’t a tonic-clonic episode. It didn’t matter that for me, it was still irregular activity that needed to be immediately addressed. That it was my brain and body suffering through these episodes. It didn’t mean anything that I’d explained that my partials would escalate, that they would become debilitating if under-medicated. That I’d pleaded with her. No, in her uneducated, seizurist opinion, a focal episode certainly didn’t require rescue medication! Didn’t warrant a doctor to be called, a second opinion sought on my clonazepam dose. I knew that in her mind, perhaps these incidents hadn’t really happened since she hadn’t personally borne witness to them. And I sensed the other unspoken, that as sweet and barbie-esque as I looked, I was a pill-popper, a benzo addict, who just wanted the drugs.
And all of those suspicions were very much confirmed on night two with her as my nurse. During the day, the junior doctor on duty had admitted to not feeling confident in changing my medication chart when I had such a “big dog” as my neurologist! But she impelled me to call the nursing staff as soon as I felt close to seizure, to have them to deal with my clonazepam dose as the situation was arising. So as I tried to drift off to sleep at 11pm, and immediately felt my heart rate rise – one of my pre-ictal symptoms – I called my friend from the previous night. And all hell broke loose.
She returned as I was walking to the bathroom. My body felt tense, I postured, holding my right arm across my body, my hand on my left shoulder. Brisquely, she informed me “No. You won’t get that medication until 1am” She’d obviously misinformed me about the time-frame on the medication chart, that didn’t make sense for 20 hours, or even 24.
I became frustrated. Still standing there, posturing, I made my point to her. I tried to advocate for myself. My family were tens of thousands of miles away – if I got any weaker, any sicker, any more sleep-deprived, no one would stand up for me. I needed to stress my point.
As I explained to her that she had misinformed me previously regarding the charting, that I wouldn’t sleep seizure-free without medication, that I was exhausted, she reached out and clamped her hand around my wrist. The one that I’d been posturing so uncomfortably. I asked her to remove it, she didn’t. I went completely against my natural character and asked her more vehemently, more loudly. She accused me of being agitated, as she still refused to move her hand. In shock, I explained that anyone in a pre-ictal state is likely to be emotional and should not be touched. That she should understand this.
(PC: Epilepsy Action Australia)
Our disagreement brought other nurses, to whom I explained the situation. I understand that they are bound by certain protocol and I related this to them. But impelled that I was exhausted and extremely concerned that I would escalate with continued sleep deprivation. I imparted to them that I knew the dangers of excessive benzo use and always try to keep clonazepam use to a minimum. (I’ve been using it for almost 13 years). I knew by their reaction that they too didn’t fully comprehend how difficult focal epilepsy could become, I saw that same seizurism in their faces. I still tried to explain, to reason. Somewhere in this discussion, the nurse who’d prompted the issue, announced that I’d clearly been pretending to have epilepsy while admitted. Thus confirming that everything I’d suspected about her opinion was true. Her view discounted various other witnesses, including other members of the nursing staff in that hospital. It disregarded years of irregular EEGs, an irregular PET and the opinions of two world-renowned epileptologists. It broke my heart.
So I got the medication early that night, but I didn’t dare ask for a second dose when it soon wore off. The seizures came and came, over and over. I pulled my curtain across and didn’t press the bell. I stopped being capable of advocating for myself over the next day.
By the Monday, I couldn’t make it to the bathroom without a seizure on the floor. I often needed to be helped back to bed. Strangely lots of patients and nurses witnessed these incidents! By the time my neurologist intervened, I felt the weakest I ever had on account of epilepsy. When the chart was fixed, no amount of clonazepam would break the cycle for more than a few hours, the damage had been done. I’d escalated too far, was too sleep deprived. It was one of the lowest points in my almost twenty years with epilepsy. I knew that this would never have happened at home.
It wouldn’t have happened without seizurism, it wouldn’t have happened without the nurse’s deduction that I was a pill popper. I felt demeaned and disregarded, invisible. In this nurse’s opinion the focals that had been utterly destroying my quality of life for such a long time, were essentially nothing. How could they be nothing when they could become so utterly debilitating? Aren’t there over 40 types of seizure? Shouldn’t they all be considered notable? Hadn’t all seizures been created equal?
It left me with so many questions. 60% of epilepsy suffers have focal epilepsy with many of us also prone to generalising. Seizurism is certainly not something which exists within the epilepsy community – we support one another no matter the diagnosis. Yet why are those of us who experience partial seizures, most of us, exposed at one time or other to this kind of reception in the medical world? Why the prejudice? Is it because our seizures often sound atypical? Frontal lobe seizures are frequently short in duration – a fact that I explained to the nurses in question when they told me it was difficult to medicate what they had not witnessed. So in the scheme of things, my left frontal lobe focal seizures aren’t that atypical. Yet, why are we focal seizure sufferers still, at some point in our epilepsy journey, more likely to be written off as having psychogenic seizures? Brushed off with explanations like ‘migraine’? Have certain seizure types go completely un-medicated? Only to have an epileptologist later confirm our diagnosis. Why is this not an issue we are discussing more?
Eventually, with melatonin, I slept. the cycle broke. The second I felt strong enough to make it into a cab, I asked to be discharged. I certainly hadn’t recovered enough to be alone, but I felt safer in control of my own medication. I might be feeling physically better, but emotionally it will take a while. That interaction, that powerlessness, opened me up to the shadow side of having focal epilepsy. A world where we are unseen and unheard, even by members of the medical community.
I know that I was somewhat unlucky in my dealings with this nurse. But the incident still highlighted to me the importance of talking about seizures, and not just our tonic clonics. We need to educate people, including some medical professionals, on focal episodes. So that we are better supported and no one comes away from any encounter feeling as isolated as I did two weeks ago.