does anybody else go through this? Maybe someone can relate?

About a week before I am due for my period, my IIH goes NUTS, and I am literally down with the headache from H3!! and just, a general feeling of blah! Is there any way to make this better? I seriously do NOT like being a woman when this hits. Its like two weeks...in the Desert without water, food, shelter, tampons, and my meds. By the end of it all, I just want to sleep...then BAM...two weeks later it all happens again.

Does anyone have some sort of home remedy or ANYTHING they follow to help with this? I am going NUTS here....:(:(

yes, but I guess I am lucky because it hits a few days before my period and lasts a few days after, not 2 weeks. and I was able to alter the pattern with Diamox, somewhat. Prednisone makes it all go away. I think Progesterone helps, but not sure you want to take it at your age. but, if you have irregular cycles then your progesterone might be low and this might be part of the problem. actually, if your problem lasts 2 weeks it suggests you may not be ovulating, which would lead to low progesterone levels. progesterone has been shown to reduce brain edema. interestingly, progesterone is also important for upper airway tone. so a low progesterone can increase sleep apnea too. Dr. Park thinks that many of the symptoms of PMS are actually due to sleep apnea, and I agree. increasing OSA during this part of the cycle can also make IIH worse at this time, due to the effect of OSA on increasing ICP.
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he comments that estrogen dominance will lead to lower progesterone effect and may worsen OSA. this would explain any worsening with estrogen based birth control, like the NuvaRing or pills.
you could get a progesterone level checked at day 21 of your cycle to check this out.
when I first started my progesterone it was for perimenopause, and I did as instructed, and took it only during my luteal phase. however, one missed dose and I felt like DEATH. once I figured this out, I decided that taking it thru my cycle was better than death, so that's what I do. I thought it was helping my OSA but now I realize it is probably also reducing the brain edema that is created by OSA (my own theory, based on my research).

Deb

Deb, you are DEAD on with the progesterone...along with my IIH, I have three microprolactinoma, and to keep them in check, I was on progesterone pills (along with...I don't remember what it was called). It was helpful!!! But The tumors are classified as microadinoma so they stopped with all treatments :(:(

bromocriptine?
ask for a 21 day progesterone level. if you have irregular periods you should be able to get your Gyn to do it.
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these papers discuss the neuroprotective effects of progesterone, esp. in decreasing brain edema.

perfect! I'll bring it up to my regular doctor...

My gyno was the one that put me on hormonal birth control, when I shouldnt have been...I won't be seeing that guy ever again...

it doesn't seem like most docs really know about this. I am so grateful that my intuition was so strong when I had my kids that I figured out how to get an elective C-section. this is frowned upon but I had a lot of good reasons and the OB I found was very open to them. however, the most important reason, the IIH, was one I didn't even know about at that time, and I thank the universe for helping me avoid a vaginal delivery; what a nightmare that would have been! it certainly wouldn't have been considered elective for that indication.

i am on the pill and its to help with my pmt and pcos
i see a major patten start of my stip of pills i am low and lost all intrest apart from in bad food then bang about a week later i wake up one day and feel as normal as i can.
about a 2 week maybe less i feel ok ish then i get what i call horny week. i just seem to go nuts and want to be around people and flirt. this seems to send my pressure sky high.

i see a gyn is september so lets hope they can work something out as when i tried to come off the pill i went right down low and wanted to die and was so scared of my anger and feels.


hugs