I have no helpful info...but I do feel your pain/frustration. Even adding topamax back in has not helped mine, and I only take that at bedtime. Actually I have been taking it about an hour before trying to go to sleep to see if it would help, but it doesn't...

Sorry I'm not more help,
Kristena

This is a tricky question because PTC makes us so sick, we think every health problem we have must be related to the PTC somehow.

This can be a really dangerous habit to get into, because something completely different could be going on and if it never gets checked b/c it is written off as a PTC issue, you lose the benefit of early detection.

There was no mention of a link between PTC and Insomnia on the IIH or on the Mayo Clinic website.

Just the same, every time a new symptom pops up it is a good idea to get a check up from your PCP and notify your neuro/optho.

Lots of things can cause your insomnia...Stress can override any sleep med, and then you have to look at your diet during the day...how much caffeine, how much sugar, do you keep a regular sleep schedule, do you exercise? If you do how close to bedtime are you exercising? Do you have a sleep routine, is there a television in your bedroom...etc...

Then, take a look at the med-Trazadone, a Tricyclic Anti Depressant. I love this med, helps with sleep and depression, but maybe you need something in addition to the Topamax-it may be a great anti depressant for you, but maybe you need a short acting med from the benzo family just to help get you to sleep quickly and the Trazadone will help you stay asleep.

Even just coping with a Chronic Illness can cause insomnia

So, after rambling for a very long time, maybe get checked out by your PCP...your insomnia may not be related to your PTC at all, you could even ask your Dr about a sleep study.

Then, inform your neuro/optho of your PCP's findings and make sure everyone is on the same page.

Best, LuLu

I have no helpful reply. But I feel your pain. Ever night, I'm like "I should go to bed" lets say its 10pm. Then it's 11,12,1,2,3.
I too am a victim of the sleeplessness.
It's awful.

I have had several sleep studies. I use a bi-pap religiously and my apnea is under control. Hooray on that. One of the beauties of observation is noticing correlation - what things seem to happen together. Tho, correlation does not neccessarily mean causation. Some third thing could be causing them both. Pressure up-----insomnia up. Wish somebody would do a study.

I'm with you on meds an hour before bed. That works best for me, too.. In my case diamox and trazodone.

Hey SeaSprite,

It is great you have had a sleep study. Just because there has been no discovered link between PTC and Insomnia does not mean there is one, but it is so important to have every new symptom checked out by both your PCP and PTC Doc...your PCP is going to order labs that your PTC Doc never would simply because it is not his or her specialty and your PTC and vice versa....

PTC is so under-studied as you mentioned Sea Sprite, We just do not know what it could be linked to or would never want to miss something in the early stages since we are so used to feeling lousy due to PTC...

there is a relationship, but your docs won't get it.
http://www.ncbi.nlm.nih.gov/pubmed/23777754
http://www.ncbi.nlm.nih.gov/pubmed/23681455
http://www.ncbi.nlm.nih.gov/pubmed/23204611
http://www.ncbi.nlm.nih.gov/pubmed/22467192

undertreated OSA, however slightly, will increase insomnia as well as ICP.

Seasprite; maybe your BiPAP needs to be retitrated? maybe it was never titrated properly at all? I don't believe any sleep center will do it properly besides Stanford.

I'm at a really high pressure right now: 13/17. At my last appointment the we talked about the alternative criteria, and their actions wouldn't have been any different using that criteria, in my case. Something I found interesting is a normal thing in apnea patients, but it was new info to me. Two types of apnea - obstructive apnea and timing apnea. I have both. I was told the latter can be a bear to fix. My timing apnea resolved itself when we solved the obstructive apnea, so no problem.

The chip's report in my machine is coming out clean - no apnea, snoring, leakage, etc. Any higher pressure and I'm not sure I can tighten the mask straps down enough to prevent leaks without huring my neck. I already have to tighten those puppies up beyond the comfort zone. And no, other masks don't do a better job for me. B/c of weight loss my sleep dr. is talking about a sleep study to lower pressure, not raise it. I'm not ready to lower it yet, given the consequences if my body doesn't react well to it.

Sleep and it's relationship to intracranial pressure is so interesting. I feel better and am in the mood for a little research today. Note that in articles A and B waves refer to cerebral spinal fluid (csf) pressure waves, not eeg electrical brain waves.

Insomnia is also listed as a symptom of high intracranial pressure in the literature, separate from apnea. Most are not regarding IH, but other high-pressure diseases.

http://www.ncbi.nlm.nih.gov/pubmed/12818324
http://www.ncbi.nlm.nih.gov/pubmed/928910

http://www.ncbi.nlm.nih.gov/pubmed/12837905 (this one is a stretch to apply to us, pressure on nerves = damage is a big assumption)

Here's something to rock the data. What if in addition to sleep apnea causing IH, IH can also cause sleep apnea? A couple articles point to brain damage (or I guess in our case pressure???) causing apnea. A couple of these articles are about the chiari-apnea connection.

http://www.ncbi.nlm.nih.gov/pubmed/8412366

http://www.ncbi.nlm.nih.gov/pubmed/20887105

http://www.ncbi.nlm.nih.gov/pubmed/10767656

This article links ICP pressure to sleep stages. It uses hydrocephalus patients as it's population, but still. Maybe it explains why I wake up at the same time every night, and why my headaches seem at their worst between 2-3am.

http://www.ncbi.nlm.nih.gov/pubmed/8748854

ICP and sleep, pressure is highest during REM sleep.
http://www.ncbi.nlm.nih.gov/pubmed/2609035
http://www.ncbi.nlm.nih.gov/pubmed/2609036

I'm curious if the Chiari-apnea link is obstructive apnea, or disordered breathing (timing apnea)??? Some of the literature implies that in the cases they studied, chiari caused the apnea. I don't have Chiari, I'm just curious.

I mean this with the utmost kindness and respect. Coming from the wiped out dulled brain of me who barely can say my own name right now, you all amaze me with your ability to research and understand it. Wow! Seriously, the persistence and ongoing research done by the members here rivals most!!! You all rock!

wow Seasprite, I don't have time to wade thru all that right now but I intend to come back and do so when I can, sometime this weekend. looks like you've done some good research.

just a few comments. an expiratory pressure of 13 is going to raise your ICP. I would be on the floor with those pressures.

waking up at the same time every night, implies to me that you are having more apnea when you enter REM sleep (typical), which you do at the same time each night (enter REM). the apnea is waking you. which implies that your PAP Is not set right. I don't trust the machine to tell you anything about your hypopneas, which are just as important for IIH. any hypoventilation is going to raise ICP, so for them to say that using alternative criteria wouldn't change anything is complete BS! the alternative criteria will detect more of your hypopneas. they really don't understand the full range of sleep disordered breathing if they said that. you should be titrated to eliminate ALL flow limitation, not just to an AHI less than 5.

I am not sure what you mean by timing apnea. central apnea? I do suspect that higher ICP will increase central apnea. this is actually part of the Cushing triad which we use to assess terminal ICP. (apnea, bradycardia, hypertension occur when you are about to herniate and die) I've noticed that I had more centrals on nights when I was symptomatic with ICP.

we know that apneas increase ICP. I thought that spikes in ICP during NREM sleep were what the neurosurgeons look for in determining how significant the IH is and whether surgical intervention is necessary. but increases in ICP during sleep, and the usage of this as a gold standard in neurosurgery imply only ONE thing to me: ALL IIH PATIENTS HAVE OSA.

I'm having trouble understanding the relationship between all this stuff. What's cause, what's effect. I have no idea what to do about anything. I already see someone whose considered one of the #1 sleep doctors in my city. I could change but it's all a big roll of the dice. And additional testing I still have to pay 20%. Hugely expensive.

Yeah, I agree with everybody. EVERY person in this forum is amazing, especially on a good day. I learn so much from everyone in here.

Just speaking for myself, good days are good, on bad days I have trouble operating the tv remote. Most of the time I can't read long enough to research anything. I should take it slower and it'd be easier for people to digest. I don't summarize the info like I should because I don't know how long I have before I have to stop reading and/or typing.

Sophiasmom, I have no idea what my dr. means. He just called it "timing apnea." As opposed to obstructive apnea. Most of the time he doesn't use technical terms with me. Maybe I'll call back and ask for a clarification. I agree with you - ALL apnea should be gone, not just reduced below 5 events an hour. I had discussed that with my Dr. at my last visit, but there are also negative consequences related to raising the pressure further (for me specifically, not in general for everybody). It's a tradeoff. What to do, what to do.

yes, CPAP can raise ICP. it is two steps forward, one step back. I found it to be an unacceptable long term solution.
this was my solution:
http://www.ihaveiih.com/t1168-i-m-doing-much-better-now
not perfect, but much better.

I think it addressed what the underlying cause is: a major problem with the human airway. this changes the structure of the face and neck as a child develops. my theory is that it leads to compression of not only the airway but also the jugular veins, such that some of us develop IIH. I'm not sure if I have your email but message it to me and I can send you some interesting papers about this.

what city are you in? my son's sleep studies were read by the #1 pediatric sleep doc in our city, and he MISSED the diagnosis twice. it's a big problem.

hi Seasprite;

OK, looking over your research above. what follows is my take on the abstracts you posted.

I used to backpack extensively. it was commonly understood that being at high altitude disturbed sleep, and I would wake up more frequently to have to pee. however, with lower oxygen tensions, sleep apnea will cause more oxygen desaturations which will lead to awakenings. since all humans have sleep apnea (most unrecognized), this would explain the insomnia at altitude.

same deal with the hydrocephalic study; probably these infants had OSA unrecognized that raised their ICPs and increased symptoms from their hydrocephalus.

brain tumor/injury reference; the kids who had symptoms of OSA but had clean sleep studies? bad sleep studies. they really did have OSA. probably all humans do. brain injury has been shown to increase OSA. stress does something to destabilize upper airway tone. and certainly brain problems can increase central sleep apnea. but centrals are seen in kids whose OSA is missed, because the arousals triggered by the missed obstructive events will lead to centrals.

autonomic dysfunction is seen in sleep disordered breathing, as is orthostatic hypotension, hypertension, obesity, and arrhythmias. not sure the autonomic problems come first. you can't tell because the system has been so bad at detecting OSA that the conclusions of many of the past studies are probably erroneous.

fascinating info on AC and SDB. the impression I get is that ICP can cause central apnea, but also can affect upper airway tone causing obstructive apneas.

what a crock; they talk about "spontaneous ICP oscillations" related to sleep stages. it's not spontaneous, they just can't detect the OSA that's causing it!


sorry for my obsession.....

Obsession is good. It's what drives people to have deep knowlege in their area of interest. We all benefit.