Anyone have experience of Idiopathic Hyposomnolence?

Áine
Áine Online Community Member Posts: 2 Listener
edited October 2021 in Rare, invisible, & undiagnosed conditions
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?

Comments

  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    edited November 2017
    Hi Aine
    Welcome to the community, can you confirm what IH is? Is it Intracranial hypertension?
  • Áine
    Áine Online Community Member Posts: 2 Listener
    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: 7,602 Championing
    edited November 2017
    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.
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    I found a facebook support group that might be of interest to you? 


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