This is PTC.

I agree. It's IH. It's the reason that semi-sitting up while sleeping is so important.

Yep. When I worked in the neurological ICU we always kept the head of bed elevated at least 30 degrees on our patients with intracranial hypertension, because ICP is lower when your head is elevated. Also sleeping scrunched up, fetal position etc. will make your pressure higher than when your body is straight.

It will likely take a little while for the Topamax to bring your pressure down. It's disconcerting having a headache that you know if caused by high ICP, isn't it?! I miss the days of "regular" headaches - no fun but at least not worrisome.

I like this site so much. Learning something new each time I come and follow up. Didn't know I needed to elevate myself while I was sleeping but will start and see if that helps. I always way up with bad headaches in the morning. :( Thank you all for the info.

Sleeping upright also decreases sleep apnea. If u wake bad u have to rule it out.

sophiasmom: I had to go pull my some of my paperwork. I can't find it all... but I had a study done at home where they set up a camera in the room you will be awake for most of the time and a camera in your bedroom. I didn't leave my house for 3 days. They thought I was having seizures but it turned out I was having tremors in my sleep and during the day narcolepsy(sp?) spells. So, I had a sleep study not long after that and it took me about an hour to hit the REM stage of sleep.. but I don't know what all that mean in conjunction with PTC.....

well then you are the fourth person with IIH who has told me they were diagnosed with narcolepsy, an unusual sleep disorder. somehow, I don't buy it. I am going to ask a sleep med friend of mine about this.

I'll add that about a third of the IIH people who participated in the symptom list reported seizure-like symptoms.

Hey yall important stuff here. Remembrr I was having seizure like events it was explained to me by seizure neuro specialist he "believes" the REM stage is never reached or interrupted several times in an evening several of his pts are experiencing this phenomenon. He suggested new sleep study and over night seizure monitoring, hint Deb, lol, I told him I planned to later this year when there is a new standard for testing. Of couse I got the look, he asked how I knew this. I told him an informed patient is the best one he could have.

My dad has narcolepsy. I don't know if it can be inherited or not but I am asking you all. Yall seem to know more than I do?

And to add... I also have a small brain injury.. nothing to major but I have a little bit of scaring to the back of my brain where I didn't know I had a brain bleed. The neuro said it fixed itself.

I suppose you could be susceptible/sensitive to thing s your parent have because of your genes. I however believe its nerve signals gone arye in the brain due to use not reachjng6 restirative sleep because of obstruction like Sopiasmom has shown us, I srnt you links fir the gkyphatics not working without restorative sleep. If your brain isnt bathed properly this is whag happens. If blood flow to finger is obstruted the nerves and lots of other stuff says hey, hello, something is wrong.

Awry, geesh these darn predictive typing mobile apps, grrrr

I should know more about narcolepsy but I do believe it is familial.

the thing with REM is we are paralyzed in REM. so sleep apnea is worse in it. so the REM is interrupted by the apnea, duh! (you go into REM, stop breathing and wake up to a lighter stage of sleep in which you can breathe) and the apnea can trigger seizures because hypoxia reduces the seizure threshold, duh! if you don't get enough REM at night, then, yeah, on a nap you might go right into it. if you are chronically sleep deprived because of sleep apnea, might you suddenly fall asleep during the day? what we know about sleep medicine is just the tip of the iceberg. it's a baby specialty.

When this year are the standards supposed to change?