This is a man typing who has grown up believing men can cry but they shouldn't unless it's caused by extreme physical pain and even then they shouldn't mention they had cried to anyone.
I found myself crying my eyes out during my commute to work following an assessment at a hospital that had left me with no answers for the many seizure-like episodes I have been having for years. Later I sat down during a break in work and realised the only times I have cried in years, besides one time when I had tears in my eyes after receiving my degree, have been following meetings with professionals following my seizure-like episodes. Despite working as hard as I can for years since being nothing with no proper schooling and an Asperger's diagnosis in my teens I reached heights I could only dream of reaching and then I was shot down following the first of many sleep-related events that have caused me to lose jobs, move locations and feel suicidal.
The Assessment
28-year-old me saw a consultant neurologist in a hospital clinic with appropriate PPE. I had recently moved to Salford in Greater Manchester. I had had sleep-related events certainly for over 2 years and possibly even before that. It first was witnessed at Leeds Festival when I was in a tent, my friend noticed there was a noise and some shaking in the tent and when he opened the door, he thought I was having a seizure. He made sure I was okay and then made sure I was seen by paramedics at the festival who took me to their field hospital where a doctor did some general tests before telling me he thinks I had an epileptic seizure. The doctor told me to see a neurologist and not to drive until I had been seizure free for six months. I burst into tears as this meant I would lose my job and have to leave my home in Birmingham. It was hard to take but I moved across England to live with my parents in Salisbury again and worked in new jobs in Wiltshire until it was safe to drive again. I was pleasantly surprised when my former boss offered me my old job back but located in my home city of Manchester. I moved across England again and got off to a great restart with my old role and I met a girl I fell in love with immediately.
Subsequently, this girl became my girlfriend and once we began sleeping together she identified that I regularly have events during sleep. They last for about 2 minutes. I struggle to breathe and there is generalised shaking. On recovery, I tend to snore heavily. I have no recollection of these events. There is no tongue biting, incontinence, or general aching on waking up. They occur perhaps once or twice a month. I can recollect previously after a lot of alcohol I may have wet the bed though it is unclear whether there was a seizure-like episode related to that. I am never sleepy during the day unless there is an obvious cause and there does not seem to be any other features of sleep apnea. There is no family history of note.
Whilst waiting for appointments and advice another friend awoke during a sleepover to me shaking and making noise in the bed next to him. He rang for paramedics and I was taken to a hospital for general checks and I was advised by a doctor not to drive again. My job role changed to suit this as I stopped driving and I also gave up alcohol and avoided caffeine whenever possible for weeks in the hope of stopping these sleeping episodes but to no avail. Despite my employers adapting my role to work from home and support from my girlfriend and family and friends I couldn't help bursting into tears again wondering why these night episodes happen to me and why is it when I'm always doing well I have setbacks.
I was seen by my general practitioner who said it was stupid to stop driving considering it had been nearly 2 years and these night episodes have never affected me when I'm conscious. My GP spoke to the appropriate people and I was referred to a neurologist for a fresh assessment and tests of my brain. I started on Levetiracetam following another seizure in my sleep and I had been on that for about 5 weeks when I met with a neurologist. I tolerated the medicine well and had not had any further sleep-related events. There was no myoclonus or episodes during wakefulness. I recently got a new job and have been driving. I am a non-smoker and I drink about 14 units of alcohol a week. I don't participate in recreational drug use. My appetite and sleep pattern are normal as is my mood. I had an MRI when I lived in Salisbury, the result of which was normal. I had not had any other investigations so the neurologist did some. On examination, a fundoscopy was normal as were the rest of my cranial nerves. There were no neurological signs in the limbs. My pulse was regular. The neurologist reviewed the MRI report which is normal.
I am sure I have had these events in my sleep for some years. It is unclear their mechanism, but it might represent a minor generalised epilepsy. The other consideration is whether they could be related to sleep apnea or a REM sleep movement disorder. Further investigations will be organised and I will be taking stronger doses of anticonvulsants as well as keeping a diary if these events occur. Clearly, if they stop on medication that might be suggestive it has an epileptic basis.
I had an EEG which came back as normal but this could be because I am on anticonvulsant medication anyway. If it is a generalised epilepsy, they are often easy to control on low doses of medication according to my neurologist. The night episodes I have seem to have been occurring for over 3 years during sleep and even if they are epileptic therefore, my neurologist does not see that I would need to stop driving at this point. Clearly, if I had any events during wakefulness, I would have to stop driving.
After so much talking and tests I left the neurologist feeling unhelped despite speaking to the most qualified person I’ve met yet. He said I can carry on driving if I want to but if anything happens when I’m conscious the note of seizures on my medical history will not go in my favour. I started crying on the drive to work afterwards, I was crying so hard I had to yell and shout to let my emotions out. I just don’t understand it all and why… What do I do? Just sell my car, quit my job and push trolleys around a supermarket again. I’m not letting these unexplained night episodes stop me from working in my dream job role especially when I feel fine when I’m awake.
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