_{IIH and sleep apnea}

hi everyone.
I am wondering how many others of you out there have also been diagnosed with obstructive sleep apnea.

There is a definite relationship between IIH and OSA, and it has been shown that individual apneas can increase intracranial pressure. The hypoventilation (decreased breathing) associated with OSA increases the level of carbon dioxide in the blood which increases cerebral blood flow and increases ICP. I have found my OSA is the biggest factor in causing my symptoms of IIH. I also had to fight to even get diagnosed with OSA. It was a much harder fight than getting diagnosed with IIH, once I realized I might have it.

I was actually quite thin at the time of diagnosis of OSA (I've gained 30 lb since then), and when I know in retrospect that I was suffering terribly from the IIH. OSA is even more common among those who are overweight, which I assume many of you are given the typical presentation of IIH. But doctors are notorious for underdiagnosing OSA. However, a recent study using more lenient hypopnea criteria to grade sleep studies showed that the prevalence of OSA is 28% among overweight women and 52% among obese women. I know that these "alternative" hypopnea criteria are more accurate because the "recommended" criteria missed my diagnosis. One thing to keep in mind; you don't have to snore to have OSA, and most docs don't know this.

Dr. Barry Krakow published a short scale to determine the risk of sleep disordered breathing. If you have 4 of the following 6 symptoms, you have a very high chance of having sleep apnea: 1) waking up from sleep with a dry mouth, 2) waking up at night to urinate, 3) waking up with a headache, 4) impaired concentration, 5) impaired memory, and 6) difficulty paying attention.

how many of you have been diagnosed with obstructive sleep apnea?
how many of you have not been diagnosed but get at least 4 out of 6 on this scale?

If you are positive on the scale then I recommend that you say whatever you need to in order to get your doc to order a sleep study. tell them you snore or wake up gasping for breath. and if the study is "negative" then consider going somewhere that uses alternative criteria to interpret their studies. I go to Stanford.


Deb

Hi Deb, I'm glad you've found some relief with treatment for OSA. I was diagnosed with a "mild" case of sleep apnea, but the CPAP made my headaches worse. We tried all types of adjustments on humidity, masks, and air flow, but I always ended up with an ate my ice cream too fast headache that lasted for days. We've tried it off & on for a couple of years now, but we still haven't figured it out.

I'm sorry to hear you had such a struggle with diagnosis. My neurologist sent me for evaluation because of the IIH & unexplained headaches. I think he was hoping that was the answer, but recently discovered my shunt was malfunctioning & I was suffering from low pressure headaches. The sleep medicine team didn't seem to think that should have affected my apnea or treatment in any way, but tabled any further trials until shunt issue has been resolved. I think this is great information & I hope more people find some relief.. thanks for sharing!

Julie

hi Julie;
I found that I felt worse or just as bad with CPAP until I put the machine on the floor on the other side of the nightstand, such that my head was no longer in its magnetic field. I found a reference suggesting that the way EMFs affect us is by causing an increase in quinolinic acid, a neuroexcitotoxin which has been linked to brain edema. this would be a big problem for one of us with IIH. I also have found that taking GABA at bedtime seems to prevent the CPAP negative effects. This would block the effects of quinolinate as well as glutamate which has also been linked to brain edema, and which is stimulated by OSA. these might be some things you can try to see if you can make CPAP work for you. it took me almost a year and a half to make it work. prior to that I used a tongue retaining device called an aveoTSD. you can get one for about 140.00, you just need an Rx from a doctor or dentist, and it just needs to be fit to the size of your tongue. that might be better for you considering that I suspect that CPAP can increase ICP. I found a reference showing this, although the father of sleep medicine Dr. Guilleminault at Stanford apparently believes CPAP cannot do this. I wonder if in a normal person it does not, but in someone with IIH it can. one other thing to consider; if a regular sleep lab thinks you have mild OSA, probably at Stanford they would diagnose you with at least moderate OSA. also, it has been shown that somatic symptoms (how bad you feel) are inversely related to the AHI (the measure of how much apnea you have). meaning that the LESS apnea you have, the WORSE you feel. I have many theories about why this is, too much for this forum I think.
Deb

one more thing; I have found that OSA control must be absolute. meaning that any infraction can lead to feeling awful the next day. I don't think it takes very long for the apnea or hypoventilation to lead to an increase in ICP which then would take a long time to come back down. so, the CPAP must be worn religiously and NO mouth leak tolerated. (I wear tape across my lips) if the tongue retaining device is used, it must stay on at all times while sleeping or badness is triggered in as little as 20 minutes of unprotected sleep. the TRD can be difficult to use so religiously as it may come off in sleep, which is why I gave up on it. but if you get a good fit and can get used to it then you might do well with it.

Thanks Deb! I did initially use CPAP every night for three months, but symptoms kept getting worse & doctor's couldn't explain it, so my trial periods (& tolerance)grew much shorter. I was going to Ohio State University Medical Center & my neurosurgeon works with IHRF, so thought they'd be able to figure it out.. I really think they just don't know enough about IIH at this point.

We did talk about the mouth device as an alternative, but I already have issues w lower jaw. They decided not to try because it does slightly alter jaw placement. They also said it could cause more issues w headaches & TMJ, so best for me to leave it alone. They've really seemed quite baffled because they said my seal percentage/numbers were great w CPAP & I should be feeling better. I promised them I'd try again once shunt issue resolved, so I'll definitely keep your suggestions in mind.

there is very little understanding of why people don't tolerate CPAP. I have many ideas/theories about this issue. but the EMF triggering brain edema and GABA blocking this is the best one because I can see it confirmed by my experience. there is also the idea of neural sensitization as triggered by sleep apnea and perpetuated by CPAP; you already have a marked stress response to suffocation, so having something blowing on your face may trigger some of the same responses. that stress response causes symptoms. severe stress seems to make my ICP go up.....whether it is related to blood pressure or valsalva it's a toss up. When you get to the point of dealing with your OSA again keep me in mind. I have been studying this issue obsessively for over a year and a half and may have some good suggestions for any problems you run into. I see things that I don't think my sleep docs understand. also, check out [You must be registered and logged in to see this link.]
Deb

I'll check it out& be in touch when I get to that point again..thanks!

I have more information now after going to Stanford last week for a CPAP titration. They titrated me to a CPAP pressure of 12. I have only been using 8, and the smartcard data on my machine suggests that this is the perfect pressure for me; NOT! Since 2 sleep studies in Las Vegas did not diagnose my OSA, and 2 sleep studies at 2 different labs did not diagnose my son's OSA (3 different labs), and my autoCPAP machine cannot detect my respiratory abnormalities, this tells me that our testing/detection methods for OSA are inadequate for the most part. Is it possible that all of us with IIH have OSA, but the labs can't detect it? Is it possible that even if your OSA is detected, that you are inadequately titrated such that the CPAP pressure prescribed for you is too low? It is becoming clear to me that the reason I have not tolerated CPAP is because it wasn't treating my OSA, and no one knew. and if I don't treat my OSA, my ICP goes up and I feel like.....well you all know what that feels like.
there are supposed to be some good sleep centers in Chicago that might be better than your local lab. make sure they use alternative hypopnea criteria to interpret the study.

I've had a sleep test done and waiting to hear the outcome xx

I have new info now after trying to go up on my CPAP pressure. I got up to a CPAP of 11 last night for the second night in a row. and tonight I am crashing. my ICP is probably 400. and I am on Decadron! so all I can figure is that my suspicion is true; that CPAP increases ICP. and I know how it happens. I was laying there last night realizing that I was having trouble breathing out against the pressure, and that it felt like a Valsalva, which we know will increase ICP. one thing that a few docs know (Dr. Barry Krakow is one), is that patients with UARS (upper airway resistance syndrome, which few labs can diagnose) tend to not only do poorly with CPAP, but may do OK with BiPAP. BiPAP is a CPAP machine where the inspiratory pressure is high, but the expiratory pressure is at least 4 points lower, such that it allows you to exhale more easily. I am thinking that that is what I need, to prevent CPAP from raising my ICP. just something else for those of you with ICP and OSA to think about. your docs certainly WON'T. you need to be your own advocate here because sleep medicine is still in the dark ages.

Got a letter, telling me that the sleep test I did on the 19th April and it shows moderately severe obstructive sleep apnoea. Errrrr wtf im lost. anyone got any other advice apart from sleep on my side????

Sounds like a cpap machine is indicated. They seem clumsy and odd when you first see them, but once you have slept soundly for a few nights and wake up extremely well rested, you won't ever want to sleep without one. I don't have one, but I know MANY people, including my 89 year old Dad that do.

yes, that is generally where they start; CPAP. however, please learn from my issues and ask for a BiPAP. also, go to see an ENT to get your airway completely examined to find out if there might be some simple surgery that could help you breathe better and tolerate CPAP better. like having a turbinate reduction. there are also mandibular advancement devices, that you might tolerate better than CPAP. however, my OSA is "mild" and the mandibular advancement device did not completely treat my OSA. what I find is that even a little OSA causes big time problems with ICP, if you are prone. so I find I need to aim for an AHI (apnea hypopnea index) of zero. normally in sleep medicine they want you to just be below 5. sometimes they even think if you are below 10-15 that it's not so bad. but only a little hypoventilation can raise your intracranial pressure. and, yes, until you get some other treatment, do sleep on your side or stomach. never sleep on your back. you can pin a ball in a sock to the back of your Tshirt to try to keep yourself in that position in sleep. I prop myself with pillows.

I have been diagnosed with OSA and have been on my CPAP for about a month now. To be very honest I do get a better nights sleep but it hasnt done anything to help releive my headaches which I still have daily. I am greatful for the good nights sleep and the fact that I dont feel like a steam roller hit me every afternoon but the headaches are still here :(

here's a study I just found, more data on the connection b/w sleep disordered breathing and IIH:
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OK, read this abstract carefully.
they had 37 patients with IIH.
they "screened" them, and tested 14.
13 of those 14 were positive for sleep disordered breathing! sleep apnea and it's evil twin, upper airway resistance syndrome (UARS).
what you may not know, is that the typical screening process is a questionnaire called the Epworth Sleepiness Scale. I have severe insomnia and I do NOT test positive on the ESS. I feel AWFUL however, as I know you all do as well. you probably feel more pain and fatigue and brain fog than you do "sleepiness". Based on this, I suspect that they should have done sleep studies on the ENTIRE group of 37 patients, and they would likely have found sleep disordered breathing in at least 30 of them. Then if they sent the rest to Stanford to get a REAL sleep study, they would find it in all of those patients.