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.
Reading about so many fellow ICPDD patients with terrible headaches, pain, when their pressures are high. Questions about “How can I make this stop?!”. Short of proper diagnosis and medical intervention, relief from symptoms of high intracranial pressures may not be completely possible, but I know from personal experience that certain things help me enough to make things at least bearable. I don’t know if they will help you or not, and as such, I’m opening this page up to comments so everyone can learn from everyone else. This is the first time I’ve done this on ShuntWhisperer. I pray it helps because I know the terrible toll that incessant pressure and pain can have on a human being. One of my goals when I started this site was group data mining to help direct opinions and treatment of this disorder. Achieving meaningful results through that goal start here. I’m tired of seeing so many people suffer. I’ll say up front, I don’t have a clue if this will help anyone else. It may be the hardest I’ve worked on something that has little value, but I have to try. This list is far from comprehensive and will be added to over time, but it’s a start.
These recommendations are based on conclusions I’ve arrived at through evaluation and tracking of my own personal condition. I know that my pressure symptoms are directly related to how much blood is flowing to my brain. Above a certain point*, the veins that drain blood from my brain can’t accommodate the amount of blood flowing in via arteries. I have no idea if I have any CSF “imbalance”** aside from when it all drains out of my shunt when blood flow to my brain hits that critical mark. Everything here is based on the concept of reducing the demand for blood flow to the head beyond normal, and attempting to maximize the very tricky nature of how veins drain blood from our brain. And everyone, I’m not a doctor; I’m a patient just like you. I’ve had a rough time after my shunt, but I’ve learned some things as a result. I do this in service of God, praying that this information might make somebody else’s life easier. Please don’t do anything here that your doctor has told you NOT to do.
Here we go:
COOL YOUR HEAD/BODY The brain does not like to be hot. Heat, especially when combined with humidity, cause your body to demand more blood to run through the brain in order to carry away the heat. Of course, heat taken from the brain is radiated away through the skin all over your body, so the more of “yourself” you can cool, the better. Try these “easy” things first, based on where you what’s available
COOL SHOWER/BATH: Whichever you prefer, or is necessary depending on your equilibrium. The water does not have to be cold, just cooler than your body. Make sure to get your hair wet. Refresh with cool water as needed. It’s not rocket surgery.
ICE TOWEL: soak two clean towels in water. Wrap them separately in saran wrap. Put one in the freezer and one in the refrigerator. Wait for the towel in the freezer to get cold, maybe a little stiff, but not frozen hard. Take it out and put the towel in the refrigerator in the freezer. Wrap the towel you just took out of the freezer over your head, neck, and face. Be careful that the towel is not so cold as to give you frostbite. Leave it on for 15 minutes while reclining at about 45 degrees in a chair or against some pillows. When that towel is no longer cool enough, rotate with the other one. Of course, don’t leave them in the freezer long enough to turn to ice logs.
FAN/WATER MIST: Sit in front of a fan, again preferably reclined about 45 degrees. The bigger the fan, the better. You’ll need a pump mister that puts out a fine mist. Expose as much skin as modesty dictates, and spray your hair, face, and body with the water mist. Let the fan evaporate the water from your skin. Repeat as needed. If you’re in a public place where stripping down and spraying yourself with water might be frowned upon, there are misting bottles with attached fans that you can use on your face/head/neck as privacy allows.
EVAPORATIVE FABRIC HEADGEAR I loved these thing last summer. Go to Amazon, type in “Mission Multi-Cool”. I have several. I don’t necessarily endorse the mission brand; I have several of different brands, and they all seem to do what I need them to do: keep my head cool. Get them wet, preferably with cool water, wring them out, put them around your neck, pull them up over your face, or completely cover your head. As the water evaporates from the fabric, an enormous amount of heat is carried away from your skin as well. Carry a bottle of water to refresh them when they get dry. I keep a few in the refrigerator to rotate as I use and launder them. Even just keeping it around my neck helps, and when I can I pull it up over my face. A must have in the ICPDD Warrior Kit
CUT YOUR HAIR SHORT An extension of keeping your head cool. During the summer, it was the consensus of many members of support groups for ICPDDs on Facebook that short hair helped some feel better. Makes sense, long hair is an insulator and holds heat on your head. I guess this decision requires weighing fashion sense with desire for comfort, and it’s a “semi-nuclear” option because you don’t know what degree of comfort you will get until you do it. I’ve gone to a military “high and tight”, and I’ve got to say that it helps, especially when I’m using iced towels.
AIR CONDITIONING AC removes humidity from the air in a room or home. Dry air carries away moisture from your body more efficiently by allowing evaporation of sweat or the water you just spritzed on you. I’d suggest that anyone with an ICPDD have air conditioning in at least one room, especially the bedroom.
REALLY BOLD STUFF
SEEK HIGHER GROUND A temporary measure I employed in extreme situations. On several occasions this summer, weather conditions combined in a way that aggravate my ICPDD to the point of intolerablility . Even indoors I was miserable. Heat, Humidity, and High Barometeric Pressure were the evil triad for Trina and I. As fortune would have it, my mother lives in the mountains 100 miles to the east at an elevation 1000 feet higher, so when weather made conditions in my head intolerable, we went to visit Mom. Geography and elevation combined to reduce heat (approximately 10 degrees F per 1000 feet elevation) and barometric pressure (30-40 millibars, or mb. Note that this equates to 300-400 mm H2O…a very significant amount of pressure). Unfortunately, Virginia summers make humidity almost pervasive in this area, so we could rarely escape that, but the change in elevation gave the most relief. The downside is that my body would accomodate this new elevation after 2-3 days, so I would only do this when I was desperate. There was also the fact that we had to eventually go back home, possibly back to the same conditions I had fled from. Worse, after my body had accomodated to the higher latitude/lower pressure, returning to the opposite conditions was occasionally very unpleasant, but that few days of relief seemed to always give me a much needed break.
OXYGEN Two things about this: I’m just at the point of investigating this (see Sleep Therapy Section), AND you should talk to your doctor first about this. The only way to find out if Oxygen Therapy will work is trying it. Oxygen plays a major role in reducing cerebral perfusion, or blood flow to the brain. Oxygen therapy is used to treat migraines, cluster headaches, and other headaches known to be caused by high blood flow to the brain. Low oxygen tension in “thing” air at extreme altitudes is what triggers Acute Mountain Sickness, or Altitude Sickness, and its extreme and possibly lethal consequences, High Altitude Cerebral Edema (HACE) and High Altitude Pulmonary Edema (HAPE). A current theory exists implicating ongoing elevated ICPs can continually trigger migraines one after another. Oxygen is one of the most therapeutic drugs available, but needs to be used properly. Some health conditions preclude use of concentrated oxygen, so checking with your physician is recommended. Health Insurance may cover the cost of Oxygen Therapy; a visit to your doctor may save you a lot of cash.
Or at least make a dent in that amazing “Deductible” your insurance plan has.
It is available in canisters from Amazon, convenient for use or trial purposes. At $27.99/can, you’re paying for convenience. As I said, I haven’t used these yet, but just hit “Buy It Now”, and I’ll get back to you in a couple of days.
“OH-two” can also be delivered by oxygen concentrator/generators, available in “portable” and “home” versions. These devices compress atmospheric air, remove nitrogen, purify the gas, and deliver oxygen that is ~85-95% pure depending on flow and other factors. These devices are expensive, but in the world of chronic pain that can be associated with ICPDD, they may prove to be literal lifesavers. In literal 20/20 hindsight, I realize the one treatment I never tried for Trina was oxygen therapy, and that shoulda/coulda gnaws at me.
But, hey, I’m just a disabled dentist with a hole in my head. What the heck do I know.
Only what I’ve learned from this incredibly disabling shunt that has both relieved a number of neuroendocrine disorders and a lot of fibro pain – at least until end of June when it and my personal physiology decided to part ways.
And that’s why we’re here.
Last thing, at least for today:
SLEEP THERAPY – NOT AN OPTION
The previous measures discussed so far are more aimed at relief of immediate symptoms. Now we need to look at a very important interceptive/preventive measure that is aimed more at long term control of not only ICPDDs but other significant health issues as well: Sleep Disorders. There is an intuitive link between Sleep Apnea and ICPDD, but the research at this point is limited and inconclusive.9,10
Doesn’t mean there isn’t a link, but if I had to guess…and in the end, ICPDD or no, Sleep Disorders carry their own serious issues.
I can’t emphasize this point enough. If you have an ICPDD and have not had a Sleep Study to check for a Sleep Disorder, a critical part of your potential treatment may be overlooked. There is a clear link between IIH and decreased levels of oxygen and increased of CO2 in the blood. Our bodies can store a certain amount of oxygen in the tissues for use when the need is high. There has even been some evidence that resolving sleep apnea can resolve symptoms associated with IIH10
During sleep, our bodies assume a lower level of activity. Breathing, heart rate, blood pressure all drop. So, to, do reserves of oxygen, especially in the presence of a sleep disorder that can range from light snoring to severe sleep apnea where breathing actually stops until CO2 levels build to the point that the patient wakes up, gasping for oxygen “rich” air – possibly several times a minute.
Proper diagnosis of a Sleep Disorder currently requires a “Sleep Study”, where you are taken from a familiar environment to a strange one, with a strange bed, have all sorts of wires and bands and sensors attached to you, cameras aimed at you, and told “go ahead and go to sleep”. Home sleep studies are becoming more common; your doctor prescribes such a study, a monitor kit is mailed to you, you follow its directions at home, send the monitor back, and results return to your doctor.
However, if you have a smartphone and about $31.99, you can get a very accurate idea of any sleep disorder you have. I need to warn you, it might scare the heck out of you. Even if this has no effect on your ICPDD (not likely, IMHO), sleep disorders are also linked to increased blood pressure, stroke, type II diabetes, cardiovascular disease, weight gain, and other serious health disorders. By the end of next week, you can do a self-diagnosis that you can take to your doctor.
I found this fingertip oxygen sensor on Amazon for $31.99 It records oxygen levels all night, and the results can be downloaded to a computer the next day. It also has an alarm that can be set to go off if your blood oxygen level falls below a certain level. My O2 level at rest is about 98%. I set the alarm to go off at 89%; it woke me up 6 times that night.
As a reference, if I were supervising a sedation and the patient’s O2 level hit 94%, I would start to be alarmed. 89% is danger territory.
Next tool is a phone app called SnoreLab. It is designed specifically to record snoring, loudness, and duration. You download and install it on your phone (last I knew it was a free app), perform the setup, hit “start” and place your phone face down next to you in bed. Next morning you hit “stop”, and you’re presented with a graph showing when you snored, how loudly, and you have the ability to listen to see if you stop breathing…also called sleep apnea. If you do, or if the oxygen monitor shows significant drops in oxygen levels during the night, you need to take this information to your doctor, continuing the monitoring process as many nights as you can until your appointment.
Based on the results of this oxygen monitor and SnoreLab, I recently purchased an adaptive CPAP machine. Recent events have precluded me from putting it to use, but tonight, 11/9/2017, I’m going to start using it. I’m also considering adding an oxygen generator. I’ll let everyone know what the results are. Regardless of my results, I strongly encourage anyone with and ICPDD who has not already had a sleep study to at least try this relatively inexpensive but potentially hugely important test to see if you possibly have an ICPDD. If you do, run, do not walk to your physician with the handy printed results. Let everyone know how what the result of any treatment is on your ICPDD via this group data mining, and maybe we can make some serious progress into treating this disorder.
There are a few things I can do that involve prescription medications, but I am not exactly sure how to present that. Those will require an entire page unto themselves. There is controversy about how certain medications might affect ICPDD patients and possibly give emergency relief. When I am comfortable presenting this, I will put it out there. Until then,
Cerebrovasular Theory of Intracranial Hypertension, Part 2: Leading to The Danger Zone
It’s really simple. Damage/squeeze (“stenosis”) the main veins that drain the brain and a situation is created where the damaged veins can’t drain blood OUT as fast as the heart pumps it IN. Blood backs up, the brain swells, and pressurized CSF. The only cause? Dunno, but interesting that Diamox, a nasty drug used to “reduce CSF production”, is actually a diuretic used to treat blood pressure. Looking at the huge torrent of blood that flows through the brain, comparing it to what amounts to a quiet pool of CSF that changes at a snails pace, CSF MADE from blood to begin with, and it begs the question: why the focus on reducing precious CSF if the cause is actually damaged veins that can’t drain blood away adequately during periods of increased blood flow to the brain? Here’s the long story:
During my “experiential residency” in the study of Intracranial Pressure Dysregulation Disorders, it has become apparent that certain areas of the brain appear to be more susceptible to increased CSF pressure. However, I don’t believe that an imbalance in CSF production and absorption is the principal cause of my particular ICPDD, but rather a symptom, the result of an imbalance in the blood flowing into the brain vs. blood flowing out of the brain. The tenets of my current Cerebrovascular Induced Intracranial Hypertension are a direct extension of Dr. Mark Wilson’s ’s publication “Monro-Kellie 2.0“, and my personal experience as patient with an Intracranial Pressure Dysregulation Disorder that my neurosurgeon tell me does not fit any of the criteria for currently recognized conditions such as IIH. These tenets are as follow; facts are derived from “Brain Facts and Figures” (https://faculty.washington.edu/chudler/facts.html):
Two Fluid Postulate: The cranium contains two fluids, blood and cerebrospinal fluid, in approximately equal volumes, ~ 150 cc 1, in patients without ICPDD and “intact” ICP Autoregulation.
Static Nature of CSF: Cerebrospinal Fluid volume is assumed to be essentially constant for this discussion This does not dismiss the possibility that a net positive or negative CSF dynamic is not a contributory factor in ICPDD. However, CSF turnover only averages .35 cc/minute1, leading to the next tenet…
Blood vs. CSF: Cerebrovascular blood flow dynamics greatly outweigh CSF dynamics. Blood flow into the brain is 15-20% of cardiac output, 750-1000 cc/minute1, meaning that CSF dynamics represent a mere .05% of the change in volume of fluid In the brain per minute. This is a known fact apparently forgotten or ignored according to Dr. Wilson.
Cerebrovascular Network: Our brains demand a lion’s share of oxygen and nutrients, provided by blood flow. These nutrients are distributed through a network of blood vessels. In order to provide each cell of the brain with oxygen/nutrients, blood vessels must be in extremely close proximity to each cell. The vascular network is extremely complex, and is estimated to comprise 100,000 miles of blood vessels, the majority of them only wide enough to allow blood cells to pass through single file, about 6um (micrometers): 6/1000s of a millimeter. Main arteries and veins into/out of the brain can be as large as an inch, then branch out continually into ever smaller vessels to provide nutrients to each of the approximately 100 billion neurons in our brains. All of this is accomplished with a mere 150 cc of blood fluid volume, which flows through this cerebrovascular network at 750-1000 cc per minute.
Volumetric Balance: to maintain equilibrium of the volume of blood in the brain, the total venous outflow capacity has to equal the total arterial inflow ***This is the critical tenet of this theory: blood flowing into the brain MUST flow out at an equal rate****
Venous Outflow Insufficiency: The 800 lb Gorilla in your head: Understanding the previous tenets, the critical nature of sufficient venous outflow becomes apparent. Arteries and veins are vastly different in nature and function. Arteries are thick walled, contain smooth muscle, and dilate/contract in response to our nervous system and biochemicals (hormones). Veins are thin walled tubes of cells; their diameter is susceptible to posture, gravity, and the actual rate of flow through them (as per Bernoulli’s Principle). Veins are susceptible to damage by trauma, posture, and anatomical factors including Body Mass Index. When Venous Outflow is insufficient to match Arterial Inflow, there is a net increase in the VOLUME of blood in the brain.
Intracranial Contents, The Volumetric Paradox, and The Physical Nature of The Brain: The adult skull is approximately 1700 cc in volume; the brain occupies 1400 cc; blood, 150 cc; csf, 150 cc. However, there is a paradox: the 1400 cc of brain volume also contains a majority of the 150 cc of bloodwithin the skull. The brain itself is mostly water, 77-78%, contained within the network of neurons that comprise the tangible portion of the brain. These neurons are chiefly lipids (10-12%), proteins (8%), and 4-5% a combination of carbohydrates, “soluble organic substances”, and inorganic salts. The consistency of the brain is about the same as firm tofu (http://www.human-memory.net/brain.html); slightly elastic, with a degree of resilience. The brain “floats” in cerebrospinal fluid that not only surrounds it, but again, a paradox: approximately 2% of the brain’s volume is hollow “ventricles” (https://www.ncbi.nlm.nih.gov/pubmed/21120804), spaces where CSF is produced and distributed through the brain and then to the space around the brain and spinal cord (subarachnoid space). Thus, the 1400 cc volume of the brain also contains about 28 cc of cerebrospinal fluid. This is the basis for the Volumetric Paradox: 15% human brain’s volume is comprised of blood and cerebrospinal fluid.
The End Game: When Venous Outflow Insufficiency meets the Volumetric Paradox: Tofu and Internal Pressure: Our brains are soft, mildly resilient structures. They require enormous amounts of oxygen and nutrients, delivered by arterial blood flow. Blood depleted of nutrients and oxygen is then drained by veins. Cerebrospinal fluid, a crucial but poorly understood component of this system, changes at a snail’s pace compared to blood flow, and thus for this discussion will be considered a static innocent bystander for what happens next: Venous Outflow Insufficiency. If, for some reason, the main veins that drain the brain (sorry, it’s been a looooonnnnnnngggggg week, I’m a little punchy, I just couldn’t help it) are unable to handle the arterial blood flowing into the brain, a serious cascade of pernicious events follow. Blood begins to back up in the brain’s cerebrovascular network. Pressure within the network increases. This pressure cause the blood vessels in the brain to become engorged and expand, similar to the way that the veins in your arm start to bulge when a tourniquet is applied in order to draw blood for testing. The next part is my speculation, but under equal pressures, it seems that thin walled, passive veins enlarge more than thick walled arteries that contain active muscle. All within the 100,000 mile network of the Cerebrovascular network. As the vessels expand, pressure is exerted outward on the tofu-textured brain. The brain matter itself is forced to expand into the only spaces available to it: the outer subarachnoid space and the inner ventricles. The cerebrospinal fluid, the innocent bystander, is now “bitch-slapped” around by this building pressure, referred to as EOMAP, or “End Organ Mean Arterial Pressure”. Newton’s 3rd Law of Physics states that every action is met with an equal and opposite reaction; in the case of Venous Outflow Insufficiency, this means that as cerebrospinal fluid becomes pressurized by brain tissue expanding due to a backup of blood in the vessels of the brain, the CSF “pushes back”, trapping brain structure between the”Devil” of the engorged and expanding blood vessels and “The Deep Blue Sea” of the now-pressurized CSF both outside AND inside of our brains. And….
Voila’: Intracranial Hypertension. By definition. Caused not by CSF, the equivalent of a small pool of still water, but rather by the sudden blockage of the torrential river of blood that flows through our brains. There is much, much more to the dynamics of this process and how the negative process feeds upon itself, but this concept is already a recognized process in an extremely acute ICPDD, Acute Mountain Disease and its associated deadly consequence of HACE, High Altitude Cerebral Edema. For the time being, understanding this process as a potential cause of ICPDDs including IIH, NPH, pick-your-alpahabetic-combination-of-Hs, is critical to understanding what happens as its result. This will be explored in the next topic on ShuntWhisperer.com, “The Danger Zones.”
This post, this topic, this site, is dedicated to the memory of my wife, Trina Haddix, who died as a result of complications related to an untreated ICPDD. Her story will be told on TrinasPage.com in the coming weeks. I miss you baby, I love you so much. I will not let you be forgotten.