“You’re Fat, and That’s Why You Have IIH. Lose weight and you’ll be better.”

“… what if the weight gain is not the cause of IIH, but instead a symptom?

Ever heard this before?  Stick with me.  I’m on your side.

If you’re visiting this page, statistics predict you’re likely a female, 40-ish, with a “high Body Mass Index” (a number that decides if you’re fat).

Chances are, you underwent a rapid weight gain (40+ pounds) in a relatively short period (4-6 months) for no reason that you could identify.

No secret addiction to double cheeseburgers.  No nightly pints/quarts/gallons of Ben&Jerry’s.

You just started gaining weight.  Somewhere along the line you might have noticed a headache, vision problems, ringing in your ears, or any of a number of other symptoms that ultimately resulted in a diagnosis of an Intracranial Pressure Dysregulation Disorder (IIH/PTC/NPH/etcPH).

And the first thing your doctor does is tell you it’s all because you got fat.

Makes you feel really good about yourself, right?  Especially when loosing the weight requires drastic measures like the South Beach Rice Kernel Diet (where you run to South Beach from where ever you live, eat a kernel of rice for a meal, and then run home.  Daily.)

Trouble is, when you feel like hammered crap, it’s sort of hard to exercise.  My wife Trina and I shared the same PCP.  She had gained weight because she was in so much pain she could rarely get out of bed.  He told her at an appointment over the summer to loose 20 lbs.

“How?” she asked:”I hurt so bad I can’t get out of bed, you won’t treat my pain, and I only eat one small meal a day (truth)?”

His response veritably dripped of the compassion seen in medicine today:  “Don’t pick up the fork.”

Trina wisely let a few days elapsed before she told me this.  Had she told me while in the office, there would have been a serious discussion between the PCP and myself.  As it was, I mustered what I believed to have been a diplomatic tone of truly laudable nature, and on a follow up visit, confronted our “doctor” about this.  “I might have said something like that as a joke” was his response.  “Apologize to her.  Like you mean it.  Please.  You hurt her badly” was my response.

One of the many Medical “Bricks In Her Wall.”

BUT:  what if the weight gain is not the cause of IIH, but instead a symptom?

Our bodies are contolled primarily by a system called the HPA Axis, an interaction between the hypothalamus (“H”), pituitary (“P”), and adrenal (“A”) glands.  Of these three, the hypothalamus and pituitary are closely located in an area where CSF pressure seems to concentrate as it flows from the fourth ventricles where CSF is produce to the third ventricle where it is further distributed.  Also located in close proximity are the optic nerves.

Optic nerve damage from high ICPs are known to occur.

So is “Empty Sella”, or “Partial Empty Sella” Syndrome, where the pituitary gland becomes visibly deformed due to ICPs.

If vision can become impaired when the optic nerves are squeezed and damage, how hard is it to believe that the critical functions of the hypothalamus and pituitary gland (there are others, but stick with these for now) might not also suffer as pressurized CSF physically deforms them?

I have Partial Empty Sella.  My Pituitary looks like a Pancake-itary.  Before my shunt, I had terrible intolerance to exercise.  Exercise damages muscles, and require Human Growth Hormone to be released from the Pituitary during sleep.  Oh, yeah, sleep: the “sleep gland”, or suprachiasmatic nucleus, is a close neighbor…hmmm.  Anyway, after the shunt, wow, voila, most of my fibro pain is gone, and now, for the first time in 10 years, I can exercise without pain.  I point this out to my neurosurgeon, who dismisses it saying “you only need 5% of your pituitary to function,” to which I responded, “Define ‘Function'”.

Amazing.  Neurosurgeons and Neurologists say they don’t know anything about this disorder, but when a patient who has the disorder notices a change, instead of taking into consideration, the usual response is “there’s no evidence of that”, when the evidence is standing right in front of them.

Evidence also points to high ICPs causing hypothyroidsism and generally screwing with a very delicate endocrine system in such a way that a patient so afflicted might start to gain weight.

Yeah.  High ICPs can wreck the critical ability of your body to process and store calories as well as regulate your metabolism.

Then comes the really tough part:  once the fat is present, if feeds the problem by becoming not only a reservoir for hormones, upsetting the “normal” balance, but then produces its own hormones that further aggravate the situation.

Maybe the reason so many IIH patients have problems loosing weight.

Or sleeping well.

Or are intolerant of cold, don’t regulate their body temperature well, begin to develop blood pressure problems, any of a multitude of physiologic functions regulated by the endocrine/hormone feedback between these three glands (like I said, there are others, that govern mood, memory, and so on, right in a neat little cluster).

This research article is one of many that pop up when I Google Search using “IIH HPA Axis Dysregulation”.  It is a case presentation that pertains to the pituitary damage and the results.  The “Discussion” section merits, well…discussion.

Maybe physicians need to realize at the very least that weight in an IIH patient migh actually be a result of the IIH, not the cause, even though the excess weight can, and does, aggravate IIH.

Maybe show a little compassion, actually stop and recognize the distress this disorder causes, and realize that merely pronouncing to a patient to “Lose weight!” without consideration of whether the patient is able to actually exercise because of untreated symptoms of pain and fatigue.

Maybe move on to something more meaningful than…

“Don’t pick up the fork.”

This Topic is open to comment.  Fire away.  Prayers and comfort to all.


The Shunt Whisperer

Wishing for Leloo at Christmas…




4 thoughts on ““You’re Fat, and That’s Why You Have IIH. Lose weight and you’ll be better.”

  1. Sooo true about the not being able to move thing. What to eat what to eat….What kills me is that in this study from Sinclair et al (https://www.medscape.com/viewarticle/823971_2) they proved weight loss helps IIH by a 425 calorie per day liquid diet for months. How is that healthy or maintainable?? Of course your pressure will go away, you are starving to death…

    1. Sabi: I’m not a dietician, but no diet that low in calories can be healthy. Prisoners of war are fed similar diets, I would not call them healthy.

      I have heard reports of good results from a diet emphasizing lean protein from a fresh source – no canned/cured meats or fish – along with leafy green vegetables. I first ran across this in the diet of natives of Okinawa, hence the name “Okinawan Diet”. Fresh fish, pork, beef, stir fried (!) and served with vegetables. I believe Paleo also falls into this category. Another factor that seems to help is whole extract CBD oil, which reduces gut inflammation caused by preservatives in foods. I know one person who lost 20 lbs in two weeks – obviously water being retained because of inflammation & “leaky gut syndrome”. These are not restricted calorie diets and need to be accompanied by 20 minutes or more of physical activity/exercise daily, as well as consuming your largest meal in the morning and smallest in the evening. I’d start there and forget the liquid diet except as a last resort. The aggravating part of this is that even if the weight was gained due to neuroendocrine dysfunction, it is still a problem, serving as its own endocrine tissue and disrupting normal function. Doctors would do well to acknowledge this and stop rendering these condemnatory opinions.

      Prayers to you; if any of this helps you, pass it along to someone else. The world needs more Whisperers…

    2. Sabi: not certain where you live, but thru a series of serendipitous conversations too well timed to be coincidence, I learned about this hemp oil. I take one drop under my tongue twice daily; it has made a huge improvement in my energy level. I also use a CBD wax in a Firefly Vape pen; along with microdoses of Diamox (1/4 tablet 4 times daily), I’ve been able to reduce (not totally eliminate) the fibro pain I get from high ICPs. The oil is expensive but will last 3-4 months, and considering the stakes is worth a try. Prayers and all the best to you.


      Full Extract Hemp Oil:https://www.thecbdistillery.com/product/5000mg-30ml-full-spectrum-tincture/

      CBD Wax:https://www.thecbdistillery.com/product/80-broad-spectrum-cbd-wax/

      Sent from my iPhone


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