No, but I think it makes lots of sense that some women would experience that, since estrogen is thought to play a role in IIH. As if the typical PMS symptoms aren't enough, huh?!!

actually, estrogen peaks at the time of ovulation, not when you have your period. what I think makes more sense is that when you have your period is when your progesterone levels are lowest. progesterone can reduce brain edema and is needed for normal upper airway tone. symptoms of sleep apnea can be worse around your period as a result, and therefore apnea's effect on ICP will make IIH worse.

http://doctorstevenpark.com/is-your-throat-sore-just-before-your-periods

the "typical" PMS symptoms are probably due to sleep apnea, IMO. well, Dr. Park's too.

Mine acts up then too. I just had mine and had a major headache and couldn't focus at all. I think that it is effected by any hormone changes. I also get them during my ovulation so about twice a month I have an issue but the dr's won't do anything because there saying its not IIH that its just hormone related migraines so she put me on something for them and it doesn't help at all.

Since the beginning of my iih diagnoses I have also had migraine components. Without fail, 5 days before I get each period I start having flashing lights (like a camera flash) all day long for those days and I also see things like flying at my face. My headache also gets even more intense during my period so I for sure think there is a connection. I can barely concentrate at all during those days!

it's not a migraine. I thought I had migraines since I was a child. but since my IIH was cured, I don't get them.

the headache pattern in IIHWOP is indistinguishable from migraine. the only way to differentiate them is to get an LP. If you have been diagnosed with IIH, then your headaches are from ICP. your ICP is not constant, and things trigger it to go up. a big one, if you are not treating it is sleep apnea. and this will get worse right before and during your period. the visual symptoms are probably optic disc edema.

For me it's a week or so before and during my period. I have pretty bad anemia so I think that is a factor as well. You may want to get checked for anemia also.

anemia will worsen the physiological response to OSA. your hemoglobin is the most important factor in oxygen carrying capacity. if it is low, then hypoxia at the cellular level will be much greater, regardless of what a pulse oximeter measures during apneas.

translation: if you are anemic, and you drop your oxygen to 91% during sleep apnea (which btw they think is "normal"), your body will experience more hypoxia and hypoxic cellular damage than if you are not anemic and have the same level of sleep apnea.

so, yes, according to the hypothesis that PMS is OSA, anemia will make PMS worse.

I am with you beautifulgirls, mine is always worse the week before. I begged my PCM to do a hormone study on me where they test your levels once a week to see where they are, in hopes of trying to find some way to avoid the massive headaches every month but they wouldn't do it. He was nice enough to tell me they were capable to do it just he didn't think it was necessary.

Army wife- that's horrible. I know ih has a lot to do with hormones. Most doctors won't do anything they won't be paid for. They have to justify certain things to insurance. So I'm sure that's his definition of necessary.

Sophia'smom- I've never had a sleep apnea test done. Every time I read your posts I always think I should. I do have a lot of jaw problems too as per my dr and ent. Chemicals or any strong smell gives me an immediate, incapacitating headache. I'm hyper sensitive to noise. I have certain aspects of PTSD. Everything you write about fits. There is definitely something to your research.

Btw my hemoglobin levels are 9. With iron around 11. Before I knew about the anemia I told the dr my brain felt like it was being deprived of oxygen and he flat out told me I was crazy. That was my neurologist. Awesome guy.

armywife it sounds like you need a natural progesterone supplement during your luteal cycle that may help that. forget the army docs and just go to an alternative hormone doc and pay what you have to in order to get that Rx. it's not that expensive, if it will help you be functional for that week.

beautiful, you are very intuitive. your brain is being starved of oxygen, from both the anemia and the OSA, which all humans have. why are you so anemic? do they have a good reason for that because if they don't you need a major workup. I have all of those symptoms you describe, I am on disability because I cannot tolerate any chemical scent. I just went on a walk around my neighborhood and had to smell everyone's exhaust and plug ins and perfume spilling out into the street. I carry a mask with me everywhere. noise also bothers me terribly. earplugs in the other pocket. there is one doc in your area who may understand you somewhat and be able to help with the sleep stuff. a friend of mine, Dr. Steven Park who is at Montefiore medical center in the Bronx. www.doctorstevenpark.com read about UARS. he has noted the hypersensitivity symptoms in his UARS patients. there's also a doc who's published on UARS who works in LI, Dr. Avram Gold. SUNY at Stonybrook; his sleep lab would be good.
my reaction to chemicals has been the same as yours, however since my jaw surgery the amplitude and duration is significantly decreased.

Thank you. I am going to look into those doctors. They are not far from me.

As far as the anemia. I think it's from long heavy periods. I know my hormone levels are not normal but since I can't take bc... They are checking for endometrial cancer on the 7th. I'm pretty freaked out about it. My levels have been low for over 2 years though. It's nothing new. Since I've been on iron it feels
Like my pressure is going down.

well if your oxygen carrying capacity is going up with the iron, then your hypoxia with OSA should be improving and this may be decreasing the increase in cerebral blood flow occurring at night, giving you less ICP with your OSA.

you definitely need a FULL workup for a Hgb of 9. make sure no GI bleeding, no systemic illness like Lupus (which can cause IIH) or cancer. if your periods are that heavy then you need natural progesterone, which will help your OSA and your IIH. your docs will not understand this. the progesterone brand they will be familiar with is Prometrium. do not take synthetics or it will not do the same thing; they are drugs.

How long do you suffer with extreme headaches and other symptoms when on your monthly with IIH?

My daughter is newly diagnosed with IIH & have had a shunt placed 3 times in 4 weeks. When her monthly came on her symptoms became unbearable loss of vision Headaches etc. how long does this last ? Any suggestions? Need help at a lost with all of it especially her diet

I get worsening symptoms around ovulation and PMS and it slowly improves once my period comes. The interesting thing is unless get a spinal tap and have the excess fluid drained I do not completly get back to where I was before the flare up, I end up a bit worse each month.