My neurologist insists that once I go through menopause this disease will simply go away. He keeps bringing it up as if it's something I should take comfort in. Heck, I'd actually get a hysterectomy to rush things along if I thought it was true! I even suggested that idea to him once and he only said, "Let's not get carried away," before brushing me and the idea aside. During my last visit I pressed him about where I might find information about this menopausal cure, and he changed the subject pretty quickly, dismissing it because I seemed to be doubting his word on the topic.

Seriously, does this guy really know what he's talking about, or should I be looking for a new neurologist? Has anyone else ever heard or read that about menopause and IIH anywhere? If so, can someone direct me to some credible source that supports or refutes this statement?

He has no clue..lol. I've been through menopause and still dealing w/ IIH. It may be like weight loss and work for some. They are linking IIH to hormones and different gynecological issues, but that's a new one for me. I'm curious to see if other members will have more info. Thanks for posting the question!

That is such a crock!!! I didn't first get IIH until after a full hysterectomy. So much for that theory. I was wondering if my IIH was a result of the hysterectomy. I had that surgery in November 2011 and was diagnosed with IIH in March 2012. Hmmmm. If this doctor's facts were correct. I should be wonderfully cured right now. Unfortunately, I am still in pain and fatigued due to the medication this all in addition to menopausal symptoms.

I agree with the last post I had a radical hysterectomy at age 22 at it did nothing but increase my IIH. I was woundering if it had to due with estrogen levels because I take birth control shots for the endometeroisis that did not get cured with the hysterectomy. good luck with what ever you decide

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Yvonne Cronin
Your doctor is wrong I had radical hystorectomy and it did not change a thing. sorry to bring you bad news.

This doctor doesn't know his butt from a hole in the ground! I have had a hysterectomy (I have one ovary left) and IIH didn't develop until years later. What is he suggesting, that this is a hormonal condition? What an idiot. I think I would recommend getting another doctor, and fast! If he is suggesting this, then I doubt he is competent in other areas either. (Just my opinion).

But I do feel for you, I would volunteer to have one too if it would take away the pain. I'm sorry to say though, that it will not. I'd volunteer to have my legs amputated if I knew it would take away the pain.....

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Pam Sudsbear‏@TheRealMrsSudsy

@IHaveIIH I'm smack dab in the middle of full menopause & my IH has gotten worse if anything! Complete horses**t!

Like Julie said, hormones, weight, and age have all been called contributing factors, but there really isn't enough info about this illness to make any such conclusions. I was well past menopause when I got IIH.
Sounds like your doc just isn't interested in trying anything and wants to do a wait and see and maybe hope you will go elsewhere!! I would call him out on it. If he doesn't want to deal with the issue, he should be honest and just tell you. Can you try interviewing other docs in your area to see if you can find someone who has experience and interest in IIH??

what we say in medicine is that people who tend to get IIH are "Fat, Female, and Forty"; reflecting the tendency for obesity, female gender, and prior to menopause. I think this doc has extrapolated that saying into the assumption that it would go away after menopause. but why would it go away? if we don't know what's causing it, then how could you assume that? I am sure my mother has it and she only got worse at menopause. I get worse the older I get, although I have a few years to menopause.

I am convinced that sleep apnea and IIH are intricately linked. and we know that sleep apnea worsens with age. one paper states data suggesting that by age 70, we have a 6% chance of NOT having sleep apnea (OSA). so if IIH is worsened by OSA, then why would it go away as we age? especially since we know that progesterone, which starts decreasing in perimenopause, will protect airway tone and reduce cerebral edema? (well most docs don't know these facts..., but they are true) losing progesterone at menopause would only cause IIH to worsen, and may explain many of your experiences.

today I took my son to see a neurosurgeon for a consult and he was fantastic. he told me that in order to really consider whether my son's ICP was significantly elevated, they would have to admit him and place an ICP monitor for 3 days, and watch for ICP spikes during NREM sleep, which is when the ICP goes up the highest. this is their gold standard. you really have to ask yourself WHY? why is the ICP highest while you are sleeping??? obviously, it is because OSA is present and the hypoventilation increases the ICP. WHY is this their gold standard? because ALL PEOPLE WITH ICP (IIH) HAVE OSA!!! this is a major trigger for me and I know it must be for all of you. it was like pulling teeth to get the diagnosis because only Stanford could diagnose me. it doesn't take that much hypoventilation to raise ICP; it is below the sensitivity level of most sleep study labs.

needless to say, we will not do the 3 day inpatient ICP monitoring for my son. the doc was very encouraging that the best way to deal with this problem, since his ICP is borderline, is to TREAT THE OSA!
Deb

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new study: 50% of women have obstructive sleep apnea.

I sure hope someone will be able to come up with some definitive answers someday soon!!