My Experience with the Paleo Diet and Ideopathic Intracranial Hypertension


It is no secret that health and diet are closely linked.  For me, my diet plays an immediate role in my health and wellbeing.

I began having severe headaches in my 20’s.  They would keep me up for days at a time and make it impossible for me to lay down, because laying down only made them worse.  Instead, I would sit up and rap my knuckles against my head,  tap/press my head against the wall, or submerge my head in the hottest bath I could tolerate, except for my nose and mouth.

When I finally got insurance, I went to the doctor. I was diagnosed with ‘cluster headaches’ (without any testing or a real exam) and was given Midrin, which can be addictive, and is no longer on the market.  It took the edge off but never relieved them. Eventually, after a 3 day headache, during which I hadn’t slept a wink,  my fiance talked me into trying marijuana to see if it would help.  I had never tried it, but was willing to try anything at that point. And it worked.  Within 30 minutes I was asleep and woke up headache free. I used marijuana to manage my headaches for about 5 years, until I went back to work as a nurse.  Then I was back to dealing with my headaches on my own, which meant suffering through them.

It wasn’t until I saw an EYE doctor that my problem was properly diagnosed.  I was 40 years old.  He noticed that I had papillary edema which causes my optic nerve to bulge into my eyeball (a sign of increased intracranial pressure), and told me I needed an MRI to rule out a brain tumor, but suspected I had Idiopathic Intracranial hypertension (also known as pseudotumor cerebri). And he was right.

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Treatment options are very limited for me.  My choices: brain surgery to place a shunt to divert fluid from my brain and medications to decrease fluid.  I don’t want surgery, and the medicine doesn’t really work as well as I’d hoped.  The other option is losing weight.

I’d tried shakes, pills, weight watchers, and south beach, and lord knows how many other ways without alot of success prior to my diagnosis. Of those, South Beach had worked the best, but I just couldn’t stick with it.  After my diagnosis I began searching again for another way.  Thats when I came upon the paleo diet, though it is truly rather a lifestyle.


What surprised me the most is that after a lifetime of struggling with retaining fluid, not only in my brain, but the rest of my body as well, I suddenly began shedding water as if I had taken a diuretic- in fact BETTER than when I take my diuretics.  In the first 10 days I had lost 20 pounds.  I felt immediately better. The headaches subsided, my mental clarity improved, my chronic fatigue and shortness of breath were nearly gone.  In 10 days!

Doctors and scientists claim not to know what CAUSES of my condition but I will tell you, first hand, that when I cut grains from my diet, my symptoms virtually disappear.  I can’t say that would be the case for everyone, but if you suffer from Idiopathic Intracranial Hypertension / Pseudotumor Cerebrii, and you eat a SAD (Standard American Diet) you might consider making a change.

The paleo lifestyle is not a set in stone plan.  Some eat dairy, some dont. Some eat legumes (peanuts, beans), some don’t. Almost all completely stop grains and many also stop all sugars, including honey, fruit, etc.  For weight loss, that is ideal.  But occassionally I will use honey or a sugar substitute to cure a vicious sweet tooth from time to time.  There are lots of great paleo recipes out there on Pinterest. I have a small but growing collection on my pinterest page.  Also, recipes labeled as Keto (ketogenic) are paleo friendly and tend to be high fat, moderate protein and low carb.

Here are a few of my favorite resources:


2 thoughts on “My Experience with the Paleo Diet and Ideopathic Intracranial Hypertension

  1. Hello, great to read your story of having IIH and using the paleo diet. I am wondering if you have continued to have success managing IIH with the paleo lifestyle. My teen daughter was recently diagnosed with IIH and I am looking into paleoband auto-immune diets as a hopeful alternative for her and would love to hear more from you.


    1. I have been on and off paleo a few times since this post and I can certainly tell you that every time I ‘fall off the wagon’, my symptoms return with a vengeance. I’m currently eating a ketogenic diet, and find that I am also doing well on it, so I am pretty confident that the grains were my biggest issue! I’d love to hear how she is doing and if eating a grainfree diet also helps her!


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