1.Why do clinicians not tell you about what your #epilepsy symptoms are? Just woke up from a reset sleep but it’s led to morbid curiosity Googling. Those weird head sensations I get are called ichtal headaches. There are 3 types: pre, post & ones without seizures. I reckon I get>
2/ all 3, but I’ve never heard of them before, even though I’ve definitely described them to my #epilepsy consultant. I’ve felt like a bit of a knob, trying to describe the odd sensation that I call an ‘epilepsy head’ and how I can tell it’s different to ‘normal’ or a headache. >
3/When I get asked how I can tell I always feel like I’m coming across as a hypochondriac exaggerating a symptom. There it is, in black & white, on Google, so it must be true (tbf, the sources I was reading were peer reviewed articles😜) Seriously, why don’t medics tell patients>
4/ that these symptoms have names, are universally shared? That the sensations they are struggling to describe without the accompanying vocabulary or understanding as they are quizzed on why they know the symptoms are #epilepsy related are real? I end up holding back out of >
5/ embarrassment or anxiety. I don’t know what is important to say, differentiate between what is #epilepsy, stress or mental health related. I’m scared the consultant won’t either, as you can only diagnose based on the info you are given. If I had some of that language shared >
6/ from the beginning I can guarantee that I’d give more comprehensive info at appointments and also feel more confident. My Mum & bro had epilepsy all of their lives and just used to call them ‘epilepsy headaches’. >
7/ It’s very rare for clinicians to tell patients of risk of death from #epilepsy. Death can happen during a drawn out period of seizure (status epilepticus). #SUDEP (sudden unexplained death in epilepsy) is a risk too. But we don’t get told. > everydayhealth.com/columns/out-of…
8/ The risk may be 1 in 1000, but in my family 2 people out of a statistician’s equation died from #SUDEP/Status Epilepticus. I have always told myself my epilepsy is negligible in comparison to my Mum & brother, so my own risk is also negligible. However it can happen to people>
9/ who have only had a couple of seizures. My Mum was only 3y older than I am now when she died. My brother was only 27. All of us shared trauma, different symptoms of mental ill health but it was there. So I think about the statistics that glibly say that people with a mental >
10/ diagnosis of personality disorder have a life expectancy that is 19 years less than general population, are 75% less likely to be mothers (if female), more likely to end up in prison. Add in a few more diagnoses, trauma, health inequalities, intersectional marginalisation >
11/in other areas. It is scary. My cousin died by heroin overdose on the same day my seizures returned. It is very likely that his onset of epilepsy as an adult led to him purposely OD-ing & dying by suicide after losing his driving licence and job. That’s a lot of death in one >
12/ family that is epilepsy related, as well as all of the additional health inequalities that most people on intersections if marginalisation and trauma experience. It’s never as simple as just a dodgy brain 🧠, is it? Pesky humans and their socio-environments messing up lab >
13/ tests and meaning that no RCT will ever accurately predict how an illness or medication will impact on an individual. Otherwise, we would be told about #SUDEP & Status Epilepticus beforehand, maybe giving us a fighting chance to prevent it?
@threadreaderapp please unroll ☺️
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