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startling in light sleep wakes her up :(

ClaudiaCockburnClaudiaCockburn Posts: 9Member
edited September 2014 in Parents and carers
Hi
My daughter (4) has always had a strong startle reaction. it causes her whole body to contract meaning it can be hard if I'm supporting her in standing for instance as she'll collapse. But our main problem with it is that when she's in the early stages of sleep she thinks she's falling, startles and wakes up crying. If I lie with her she will settle again quickly but I've often counted jmps every 10 - 20 seconds for a period of 30 minutes before she gets into the deeper sleep when it doesn't happen.
Has anyone else had this and come across a solution? I wondered if Melatonin would help?
Claudi

Replies

  • mafalamafala Posts: 72Member Listener
    Sounds more like myoclonic jerks what you're describing rather than a startle reaction, although they look similar. Myoclonic jerks are benign, but give that she has CP it might be an idea to run it past her paediatrician.
  • renacahillrenacahill Posts: 145Member
    Hi
    I dont have any answers as such, but my grandson who is 2.9 also does this a lot when falling asleep. After about 1/2 hour he jerks himself awake and has to be settled again. He has been having melatonin for ages and it does help settle him, but he still wakes up with this jumping from his day nap and is a frequent waker in the night anyway. Poor daughter has not had a decent night sleep since he was born. Hope someone has an idea :-)
  • ClaudiaCockburnClaudiaCockburn Posts: 9Member
    thank you i will,
    c
  • Katherine HaywardKatherine Hayward Posts: 74Member
    edited June 2014
    Hi Claudia ,
    i´m 29 years old and the same thing has happened to me all my life. I've never taken any medication for it but doctors I saw years ago were talking about something being wrong with my inner ear but no further tests were ever done or any explanations given. When I first started my relationship with my partner he was concerned about the intensity of my startle reaction and took me to a neurologist who said that she sees a lot of people with cerebral palsy who present the same symptom.
    I am reassured to know that I am not the only person this happens to as I also have a very strong startle reaction in any situation with the loud or sudden noises and obviously as these startled reactions in voluntary one does not know when they get a happen and cannot control them either.
    These startle reactions have affected my whole life and I sleep very well generally but get woken up when this happens and it's disruptive. However I always go back to sleep again. This happens more than once a night and I also have strong muscle spasms in my sleep according to my partner which wake me up and are more disruptive than the startled reaction in sleep for me as it takes me a long while to get over. I sleep with pillows either side of me to protect me so I don't get hurt when this or the startle reaction happens and have to take extra care because apart from tetraparesis CP I also have a VP shunt to control my hydrocephalus.
    I have encountered a lot of ignorance because of my startled reactions throughout my life and have come up against people laughing openly when it happens, or asking me questions such as "what happened there ?" I even once had a trained nurse asked me "does it hurt you when that happens? " or saying ooh, aren´t we jumpy today"?
    It is so hard to know what to reply and over the years I did not say anything in reply but are now explain to the people who were in the know that it is a reflex I cannot control.
    My startled reactions have influenced my choices throughout my life for example I can't go to firework displays because the startled reaction is present with every firework goes off because of the noise. When my friends ask me if I want to go I have always said no. It also happens a lot with car horns, if I turned the radio on or TV and the volume is very loud, when a phone rings when doorbell goes, someone who has a loud tone of voice or an enthusiastic way of talking or laughs very loudly very suddenly. At school, I was referred to by teachers as a very "nervous "person and of "a nervous disposition", the 2nd comment was said in fornt of my entire class. when it's not that at all, I loved learning and was happy to be there.
    I have a mobile phone myself and have the ringer on low which surprises a lot of people I know that at least that is one way to cope with this reflex and hope that it happens less often without me having to explain so much to people.
    At least your daughter is very young still and I hope that you can find some treatment and at least understanding from people about why this happens.
    I'm not sure what kind of medication is about but would like to find out. Like I say I am glad to have found someone who has raised this topic on the forum, as I have never been sure how to begin a conversation about it with people.
    I also have really exaggerated reflexes if someone touches the bottom of my foot my whole leg jerks. My neurologist refers to this as a clonus I guess there's nothing I can do about that, as that is an involuntary reaction I've had all my life as well. My convulsions and muscle spasms happen regardless of whether I'm awake or asleep as do the startle reactions I've explained about
    Keep in touch, Katherine
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