Anyone have experience of Idiopathic Hyposomnolence?

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Áine
Áine Community member Posts: 2 Listener
I have a 38 year old daughter with a rare neurological disorder only diagnosed 3 years ago and the help or lack of help is not only negligent, it is dangerous. 

I am really struggling. 

Is is there anyone in the community with IH?

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  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,665 Championing
    edited November 2017
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    Hi Aine
    Welcome to the community, can you confirm what IH is? Is it Intracranial hypertension?
    Scope
    Senior online community officer
  • Áine
    Áine Community member Posts: 2 Listener
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    Hi Sam, no it is Idiopathic Hypo somnolence. Basically the brain thinks it needs to sleep all the time. This is of course a very basic description and does not incorporate the many other things this disorder affects. 
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,665 Championing
    edited November 2017
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    Glad I checked! That sounds really tough to deal with, Ill move your post over to the neurological conditions category and hopefully someone else will have some experience to share.
    Scope
    Senior online community officer
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,665 Championing
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    I found a facebook support group that might be of interest to you? 


    Scope
    Senior online community officer