Just wondering if anyone else feels a lot worse when laying down and is finding it hard to sleep? Have you found any pillows that help? I've heard water based pillows are good - are they? Anything to help me sleep would be great please.

Thanks,
Rosie

I have found that laying on my side at a 45-60 degree angle helps with my high pressure symptoms. I used pillows to prop myself up, but you can purchase wedges now. It's really a process of trial and error to find the best spot, but, if you're having high pressure, your symptoms get worse laying flat.

I hope you find some relief soon!
Take care,
Julie

Thanks for the advice - I have seen some of the wedges and thought they may help! Do you have firm or soft pillows? Seen any difference? Yeah was going to try a few different things and see - just not sleeping well at all because of the head pain and was hoping there was something I could do.

Thank-you, I do too! Hope you're doing okay and thanks again.

Anyone else with suggestions or who has tried different pillows/ways to sleep better please let me know.

Many thanks,
Rosie.

I did not improve until I treated my sleep apnea.  sleep apnea increases intracranial pressure and can be a secondary cause of IIH.  I went into remission after jaw surgery.  if you are a lot worse with sleeping and if you are having trouble sleeping, you must look into this possibility. 
I recommend reading about UARS on doctorstevenpark dot com's website.  it is a milder form of sleep disordered breathing that has less typical symptoms.  most prominent in UARS is insomnia.  it is hard to find on a sleep study because you wake up before your airway collapses so they never find the apneas on the study: you wake up before you have them but the airway compromise is the same.  most sleep doctors will miss it and tell you that you have idiopathic insomnia or hypersomnia.  90% of sleep apnea goes undiagnosed because doctors miss it and patients don't think they have it.

sleeping with the head of the bed elevated can help sleep apnea as well as IIH.  many people use this method.  but many people with IIH wake up feeling like death warmed over.  as long as I could treat my OSA, I did not wake up like that.