Does anyone else have insomnia? I find myself laying in the bed unable to sleep till at least 3 or 3:30am It really sucks cause I have sleep apnea too.

Yes! My daughter (the one with IH) suffers terrible insomnia sometimes. She had to stay home from school this morning because sometimes she starts to turn into a zombie from lack of sleep. The good news, is that it's not constant, it tends to go in cycles. Other IH patients have recommended a mild sleep sedative and Melatonin. It seems to help them. Have you tried anything to help with sleep?

Karla

Yes! I never seem to get more than a few hours sleep. I always find myself still reading my book at 4am, even when I've got to bed around 10ish, then I'm up again about 10am.

I sleep better when I take Ambien, but then I just can't get moving the next day. I'm usually up until 2 or 3 unless I don't have to work the next day, then I'll take the Ambien and it won't matter if I can't get motivated in the morning.

Hi all. I hadnt slept for years and didnt realise it was all connected with IIh.
Last year, my neuro said I was so exhausted. I couldnt feel well. She started me on a course of Amitriptyline, 50mgs each night, about two hours before bedtime.
And yes, I now sleep! I still have about 1-2 nights when the pain wakes me but at least I am getting some sleep. It makes such a difference to how you deal with IIH.

Maybe you could suggest this to your dr? I hope you all get some relief! Cath.

I average about 3.5 to 4 hrs a night, I take 1. mg of xanax around 6 pm and that dose would normally knock anyone else out for hours but I am still up until around 1 am. then am back up at 3:30 to 4 a.m. I have tried numerous meds to help me sleep, but because I cannot get treatment for my IH, I am inclined to think that the pressure is so high it makes the meds incapable of working.

Hi ladonna2rose,
Can I ask? Why cant you get treatment for your IIH? Cath.

I have been on disability for the IH since 2002, I am on Medicare and had Medicare supplemental insurance, In 2005 we experienced extreme financial problems, I was having lumbar punches done every 2 to 3 months, and had just been drained, but couldn't afford to pay my supplemental premiums, so I spoke with my insurance agent and he told me I could suspend my insurance until I needed to be drained again, then he would reinstate me, I believed him and when it was time to have another punch I called him to get reinstated and he told me he couldn't because it was a pre-existing condition. I was then told by my auto insurance agent that they should have told me that in the beginning and he advised me to contact an attorney and sue, as they are obligated in the state to give you that information before cancelling a policy. I contacted many attorneys but they all wanted payment up front, and because of our financial problems could not afford to persue the matter. My primary physician has since then been trying to find a neurologist to see me but they will not see me with just medicare unless I have the money to pay the difference up front. I have not been treated since 2005.

LaDonna,

most states have hcap (hospital care assurance program) or something similar. Here where I live in Ohio, the local hospital and its affiliated physicians have what they call uncompensated care. You should check into this in your area. It is based upon your income level, and they should set you up with a payment plan if you do end up having to pay for some of the services.

I also suffer with insomnia. It is an every night thing. I can go to bed, and I'm still awake 3 or 4 hours later. I also have sleep apnea. Once I fall asleep, I do manage to sleep for at least 6 hours, but it's just at the wrong time of the day that I am sleeping. I'd love to be able to go to bed when my husband does and get up around the same time. But no, I'm usually falling asleep when he is getting up for work. I hate it.. I'm always exhausted...I have IIH and I usually say.... but it doesn't have me. but these days, it's getting close

I am in the same situation as most of you, I tend to stay awake until about 3-4am, and find myself still waking up at 10am, yet not being able to get to sleep during the day! Is insomnia known to be medically linked to Intracranial Hypertension?

I am not sure if insomnia has been linked by the medical or research community, but most of the IH'ers I know suffer from insomnia.

I agree, unfortunately insomnia seems to be a common problem with people who have Intracranial Hypertension