40 winks and then some.

Caitlyn has for the last 3 years or so had a problem with being tired. It’s ruining her quality of life. And it’s something I can’t let be brushed off any more.

About 3 years ago, maybe more she started being extra tired, at first I thought it might be related to puberty or laziness. But gradually it got worse to the point I thought she might have narcolepsy but then she didn’t just fall asleep whilst walking, it was whenever she sat down, movement as on a bus, train etc. And also I noticed if she laughed a lot she would fall to the floor with her mouth twitching. Well there is a disorder called cataplexy which is linked to narcolepsy so it made sense. Armed with this data I took her to the doctors and I described her symptons to the doctors, who then referred her to have an EEG as they thought it sounded more like epilepsy.

An EEG and a MRI later Caitlyn was indeed diagnosed with epilepsy [right temporal lobe with a tendency to generalise epilepsy] she was started on medication and that was that. I assumed that the epilepsy was making her tired. But with the meds it got a little worse, I told her consultants so her meds were upped. Nothing changed, but it was ridiculous the amount of time she spent sleeping.

Since we’ve moved she has seen a new consultant who said he can’t explain the tiredness, he ran some tests on the meds she takes to see the ‘base’ levels and all came back normal. He can’t explain why she sleeps so much. The end.

But that’s really not good enough. It really is controlling her life. Everything she does, is ruled by if she can have a sleep, or if she will be too tired. Her school is really understanding. She has a bedroom at school with a proper bed for when she needs it. The thing is with Caitlyn’s tiredness, she can get quite angry/aggressive if she hasn’t had enough.

At the weekends, if we do something it has to be timed around whether she can have a sleep before we go or when we come back. If we catch a bus anywhere, she will sleep. She falls asleep at the computer. Whilst watching tele. It’s unfair. I would say she spends about 15 hours of the day asleep. 15 hours!! That is a hell of a lot.

The last week or so I have been researching online, and all I can seem to find is Chronic Fatigue Syndrome  and reading up on it, this could be what she has. But why has no one raised this before? I have taken her so many times to the doctors about her tiredness, they just dismiss it. She has always suffered with her bowel too, had to be admitted to hospital to literally be flushed out [TMI?] she suffers with sore throats all the time. So maybe it could actually be this?

But now I feel between a rock and a hard place. You see, I hate HATE taking her to the doctors, all her life we have been in and out of doctors/hospitals and I sometimes feel like I make this stuff up. But this can’t continue. Something needs to be done. We all love to sleep but when it starts to take over your life, you really need to question it. I just want my energetic girl back. I’ve not seen her for over 3 years. So I guess I will make an appointment and be quite adamant that I want something to be done. A diagnoses, tests or whatever they need to do. Maybe it’s linked to her chromosomal abnormalities.  Who knows. But that’s the point. No one does. I just know I don’t want to be palmed off. As we have been so many times before.

 

 

7 thoughts on “40 winks and then some.

  1. pedenan says:

    Just thought I’d leave a little reply for you. I think that I would have come to the same conclusion about Narcolepsy, or something like that. This is because the same thing was happening to my Mum, back in the 80’s – kept falling asleep etc, and they thought she may have a sleep disorder, or epilepsy ( she didn’t), and the dr went so far as to accuse her of being lazy – she was diagnosed with chronic fatigue syndrome after about 3 years or so – years! It’s maybe worth persuing with this – I dunno. Also, due to my own mental health issues, I take medication that is also licenced for epilepsy – I sleep perhaps 12 hours a day – not 12 hours straight, but 9 hrs at night and 3 hrs during the day, and I get very irritable if I don’t get enough! Anyway – just thought I’d share that with you! Must be hard for both of you, and I hope you get to the root of the problem sooner rather than later 🙂

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    • coodababy says:

      Thank you Andy.
      The doctors did think it might be the medication which is why they tested her blood as they can read the base levels so they actually know if it is causing it. It’s not in her case. I will call the doctors tomorrow to book her in to see someone. 🙂

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  2. Tracy says:

    Hi Kirtsy, I’ve just read your post, have you thought that she may be lacking in vitamin B? I know it sounds weird or maybe a bit too simple, but I went through similar (but not as bad) as what you’ve just discribed for about a year when I was about 13 maybe 14, I would come home from school & fall asleep straight away my mum would wake me up for dinner then I’d go straight back to sleep. The doctors did a blood test & said I had a virus but couldn’t tell me what virus & couldn’t treat it, basically we were fobbed off!! I started taking multi vitamins which seemed to help. Years later I discovered that slow release vitamin B stopped me falling asleep at my desk….I’d get to 3 o’clock & just couldn’t stay awake, even coffee didn’t help. It’s worth a try and you’d probably know within a week wether it helps or not??
    Apart from that I hope all is well with you guys!! Long time no see…….we are crap!!!
    Tracy xxx

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    • coodababy says:

      Yep she takes multivits. But I might give them a go, anything as it’s getting so bad. She actually falls asleep anywhere. I just know that this can’t go on, it will get to the point soon that she will have to not go to school as it’s that bad.

      I shall give them a go and let you know the results. And yes we are crap. xxx

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  3. Gina @ Oaxacaborn says:

    I’m so sorry you and C have to go through this! There was a time several years ago for me, when I was so tired I could scarcely get on. No matter if I slept 12 hours straight, I would still wake up exhausted. After lots of run around, I finally had my hormone levels test and found I had a great deal of hormonal imbalance and…my thyroid in particular, and also my adrenal glands. Around that time I also discovered that every time I ate something containing wheat, I would nearly fall asleep on the spot. Allergy testing confirmed this. I ended up taking thyroid medication, adrenal supplements,and cut out wheat, and eventually the exhaustion and constantly needing to sleep went away! Best of luck to you — I hope you can get this resolved!

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    • coodababy says:

      Thank you lovely. This did cross my mind too, thyroid problems. This is why I do need to get her checked out, I just hope we don’t get palmed off with, oh it’s her other medication. adrenal glands? I need to research that some more as never heard of them having problems before. How are you now? Do you still need to take medication?

      Hopefully we can get an appt sometimes next week and get this sorted xx

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      • Gina @ Oaxacaborn says:

        I am very well now, and am completely off the thyroid medication. The dose was reduced until eventually I was able to stop taking it.

        Google “adrenal fatigue” or “adrenal burnout”…I know there are articles which explain it better than I can. It can also cause digestive disturbances!

        I hope the doctors will truly LISTEN to you. x

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