“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…

 

 

 

8 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.

      Wes

      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

      >

      1. My doctor keeps telling me I’m fat and that I need to lay off the sodas and snacks.

        1. I don’t drink sodas
        2. I don’t snack
        3. I’m so tired everyday I can barely function
        4. I have so little energy that walking up the stairs from my basement apartment is a strenuous activity
        5. My HR has gone from a baseline of 60 to a baseline of 112 since being diagnosed and put on meds.

        How am I supposed to work out when I barely have energy to get out of bed?

      2. “My doctor keeps telling me I’m fat and that I need to lay off the sodas and snacks.”

        I think we may have seen the same doctor. Jesus’s words to the Pharisees seem to apply; in these cases, doctors seem to be acting as “lawyers”:
        Luke 11:46 “Woe unto you also, ye lawyers! For ye lade men with burdens grievous to be borne, and ye yourselves touch not the burdens with one of your fingers.”

        This type of counsel from a physician is cruel. It is devoid of compassion as well as an understanding of the patient’s condition they are ostensibly treating. Yes, excess weigh adipose tissue is a problem in that is an unregulated endocrine reservoir, aggravating endocrine imbalances, as well as affecting intra-abdominal pressure, which directly affects intracranial pressure. The research on both of these areas is well established, yet for whatever reason, many “physicians” can’t be bothered to research it on their own.

        With regard to your fatigue, this speaks to possible dysregulation of the OAT (Ovarian-Adrenal-Thyroid) adrenal axis, one of the complex, self regulating endocrine systems in our body. As one endocrine gland produces a hormone, another gland senses the presence of that hormone, and in response, stops producing another hormone. Both have and affect on the other member of a particular endocrine axis. Your lack of energy may be hypothyroidism, which may or may not be caused by an overabundance of another hormone, which tells the thyroid not to make thyroid hormone. Since hormones are lipid soluble, excess fat tissue can create an abnormal abundance of one or more hormones, essentially throwing that entire system “out of whack”. Additionally, there are other axes as well which interact with one another, the most notable being the HPA (Hypothalamus-Pituitary-Adrenal…notice the common adrenal gland with the OAT axis). The same rules apply, and dysfunction of the HPA axis can, and does (as I can attest) lead to chronic fatigue and fibromyalgia. I won’t detail the complexity of the interactions here, but despite what your physician may tell you, PubMed is one of the most reliable sources of research and information.

        What to do? IMHO, there’s a strong possibility any excess weight you carry may have been caused by elevated intracranial pressure. The hypothalamus and pituitary are subject to the same pressure as the optic nerve; doctors become very excited (and properly so) when a patient’s optic nerve becomes deformed by pressure and take immediate action, but if you show flattening of the very-small-but-very-critical pituitary gland (Empty Sella Syndrome), the response I’ve always gotten is “it’s a normal variant”.

        Really? Then why am I so tired?

        So. This is advice from someone who survived what you’re going through. My wife, by the way, did not. I understand your frustration. That said, the truth is that if you don’t help yourself, no doctor is likely to. So, here’s my advice:
        1) Don’t push yourself. You are a very sick person, you just lack protruding bones and arterial bleeding –
        this illness is invisible to everyone but you, but it’s real.
        2) Concentrate on losing weight, ounces at first, then pounds:
        a) Eliminate all carbs and gluten from your diet 6 of the seven days out of the week. Eat
        lean protein, vegetables, fruit. Easy on dairy. Cut your portions by 2/3 and eat
        5 small meals/day – this is very important
        b) Excercise as much as you are able. Walk every day, a few steps farther a day. Yoga-type stretches
        are great.
        c) Stay well hydrated.
        d) Stay off the scales except for once a week.
        e) Allow yourself a small reward of ice cream or something similar if you feel you have made good
        progress for that week.
        f) If you’re the type of person who can follow such things (I’m not), Paleo/Keto type diets are very
        good. Still give yourself that weekly reward for your work, which is what this is.
        h) Monitor your blood pressure and heart rate lying down and standing up twice a day. Your high heart
        rate may be a symptom of Postural Orthostatic Tachycardia Syndrome, a common comorbidity with IIH.
        Again, readily researched and understandable.

        I will offer one more bit of advice that is more spiritual than physical, but more important than any dietary or medical information I could otherwise offer:

        Pray to Jesus Christ for help. He is our anchor.

        There have been times when I was so sick all I could do was recite the Lord’s Prayer. Those prayers were answered. I gave my medical condition entirely over to Him, live or die, I felt so badly, I didn’t care. What followed was two long difficult years which were necessary for Him to show me what my problem was (a leaking shunt). During that time, there were four separate occasions for procedures which seemed like such good ideas at the time, but in hindsight, would likely have made me worse. When my leaking shunt was repaired, I had immediate, massive improvement. Don’t get me wrong, I still have challenges, but that is to be expected with a disorder of this severity – it literally crushes are brains. Why is anyone surprised at the symptoms we display? No doctor can heal the body with out the spirit being nourished as well. Christ is the Greatest Neurosurgeon, and I have to acknowledge that to anyone asking my “advice”, because to tell the truth, I look back on the path I’ve walked, and the sides are steep and narrow, yet I didn’t fall off…

        As always, Prayers for Comfort and Healing. Don’t do this on your own, but stay away from support groups that don’t actually offer support.

    3. Hi i would like if you can help me with how you lost weight and food that you are eating.i live in Montreal and i can’t find a dietitian that can help me .i am still struggling.my neurologist doctor is not always available . i feel very frightened.because i am alone on this path. I would like to know more about your story. Thanks. Dora

      1. Dora: I found the book “Adrenal Fatigue Syndrome” by Dr. Michael Lam very helpful: https://www.amazon.com/dp/1937930009/ref=cm_sw_r_cp_awdb_imm_THSBA1YXGCGGWTGVK9E9

        Additionally, I recommend that you check out Dr. Lam’s website, drlamcoaching.com.

        I have no doubt you feel abandoned with regards to steps you can take short a few tersely barked comments as the doctor is leaving the exam room. Unfortunate, because the route to weight loss and improvement it can bring are the same as they have always been: reduce/eliminate white sugar and carbs, rely on fresh vegetables and lean protein for calories, eat your largest meals earliest in the day, and try to get in 20 minutes of exercise, even if it’s just walking. My reply to another comment dated Feb 2, 2021 gives more details.

        If you can’t find a dietitian, order a book on Keto diet. Follow it 6 days on, one day of. Set a goal for yourself and smaller weekly goals. Be kind to yourself.

        As far as my story goes, see the post “Neuroendocrine Theory – How I Believe I Developed IIH”. Causative factors: traumatic birth, low cranial volume to brain volume ratio (Chiari 1), job related stress leading to adrenal fatigue. Stress is my kryptonite. Interestingly, IIH is showing up as an adverse effect of COVID (“increased cranial pressure”). A proper shunt solved most of my problems, but my neurological system is hypersensitive…as I write this, I’m coming off a two day migraine. Hopefully I’ll have a few productive days before the next hammer falls.
        As I’ve mentioned in other posts, there is one other element that has pulled me through hard times as well as kept me from receiving treatments that in hindsight would have made me much worse. That element is belief in God and faith in Jesus Christ. He answered my prayers when all I could do was lay in bed and pray. He kept me from undergoing four procedures that seemed like good ideas but in later hindsight would have made me worse off…at the very least. I came to understand aspects of my condition that seemed so obvious to me, primarily through His guidance. That is a path I recommend you take in addition to the others I mentioned. A heartfelt “God, please help me” will be answered, just remember the answer will be in His time, and according to His plan.

        Prayers for Comfort and Healing, Dora. I might add this: the basis for intracranial pressure is blood flow into and out of the cranium. Arterial Blood is the only fluid to enter the cranium; Venous Blood and CSF flow out. There has to be a balance to maintain optimal ICP. More blood in equals more ICP; insufficient venous drainage aggravates it. Keep an eye on your blood pressure and pulse rate vs. how you feel; see if patterns start to emerge. Start there and see where it takes you.

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