Epilepsy and Fatigue…

I’ve been struggling immensely the past couple of weeks with the dreaded tiredness. I’m tired but I can’t sleep, when I do sleep it’s restless. I get out of bed most mornings more tired than I was when I slipped under the duvet.

I’ve been wearing a sleep monitor. It registers how much time you spend in bed, how many times you get up, how long you spend asleep and how long you spend in a restless state. Its not scientific as its based on movement. So, if you’re wide awake but lying still, the monitor thinks you’re asleep. The results so far have been not entirely unexpected given how I’ve been feeling. In an average night of approximately 7 hours, the monitor logs me as asleep for about 3 hours. I get up 2-3 times and the rest of the time I’m in a state of restlessness. No flaming wonder I’m tired all the time!

To say my lack of sleep is getting me down, is an understatement. The headaches that accompany the sleep deprivation are debilitating. They’re a constant and no painkiller seems to touch them. I don’t like taking painkillers, I kinda think I take enough drugs as it is. I try to use tiger-balm, or work on the pressure points in between my thumb and first finger to try to relieve them. I drink plenty of water, so I can reassure myself that dehydration is not making them worse. I still drink too much coffee and I dare say that doesn’t help with the headaches, but who knows. I try to have my last coffee of the day early afternoon and apparently that means the caffeine should be more or less out of my body by the time I go to bed.

I had a sleep-deprived EEG last week and staying awake for 24 hours before hand has thrown me off kilter all the more. My poor body does not have a clue what’s going on! Neither does my head come to think of it. I’m sick and tired of being sick and tired. There seems to be no bloody end to it. I want to go to bed at night, put my head on the pillow and just sleep. I don’t really care for how long, I’m more interested in the quality of sleep I’m getting. If my monitor is to be believed then the vast majority of time that I’m meant to be sleeping I’m actually thrashing about, tossing and turning and generally not in the land of nod. This is not good.

I’m hoping the EEG is going to help pinpoint the root of the issue. I’m hoping its going to prove that the amount and quality of sleep that I get has an adverse affect on my epilepsy. I know that my fits are more likely to happen when I’m tired, to be honest, I’m beyond staggered that I haven’t had an episode in the last few weeks. Apart from a fainting episode which may or may not be related, I’ve managed to stay upright…I know I’m exhausted and I try to rest, but I can’t switch my darned mind off. It bloody well knows I’m knackered but it still goes for it like you wouldn’t believe. My friend made me some meditation cds to try to help, but to be honest I just can’t seem to get into the groove of them. I know it takes persistence, but there’s the rub, I’m too tired to be bothered to try to meditate, to try to quiet my mind. It is such a vicious circle!

I have a couple of friends with very young children who still need nightly feeds. I am beginning to understand their state of sleeplessness and marvel how they then can get up and look after the small people during the day. It makes me feel a bit ashamed that I complain so much about my lack of sleep. But, I suppose that they know why they aren’t getting the recommended amount of sleep. I think, for me, one of the hardest parts is actually not knowing the reason why I sleep so badly and if or why these negative sleeping patterns are affecting my epilepsy. When I say I’m tired, I see the look of disdain cross the face of the person I’m conversing with. They understand tiredness, who doesn’t? The constancy of it is what’s slowly breaking me and that’s what doesn’t come across when you tell someone you feel tired and headachy. It’s my least favourite combo and the time when I feel the greatest fear.

I used to work in a tobacconist shop. I had a fit there once, when I was 17. Right in the middle of all the jars of shag. I loved the smell of the different tobaccos. I still love the aromas. I don’t remember feeling this fit coming on. The first thing I can recall is the owner of the shop taking me to his house so his wife could look after me until my parents could pick me up. Luckily for me, they were family friends, so I was in safe hands. The owner said that I was alone in the shop and I started the fit just as he arrived. It was an early mid-week morning. Knowing what I do now about the lead up to my fits, I suspect that I possibly wasn’t the most helpful shop assistant that day!! I wonder how many patrons I offended?!

I know I’m not myself at the moment. The thoughts are ping-ponging and the fatigue is draining. There are times when I just want to throw in the towel and let the fatigue take me to the seizure that waits around the corner. It’s there, it’s that constant threat. I just don’t know which corner it’s lurking around. When will it leap out and yell “surprise”? When will it take my legs from under me and take control of my body and brain? When will it push me to my physical limits and then leave me on the black side of the door to darkness?

3 thoughts on “Epilepsy and Fatigue…

  1. I’m sorry you are having a horrible time sleeping. A main thing is sleep deprivation is a huge seizure trigger along with large amounts of caffeine for a number of people with epilepsy. Including myself. Lets also throw in the stress of not being able to sleep. I totally understand what you are going through. I hope you can get some answers from the EEG. Please tell me you at least got the silly glue out of your hair from the test 🙂 Be safe!
    – Whit


  2. Pingback: Sick and tired of being tired! | Musings on Epilepsy, MS & Life...

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