Welcome to The Shunt Whisperer. I’m a 57 year old professional forced into retirement and disability as the result of a sports injury over 10 years ago. I was treated with a VP shunt in May 2017 as treatment for an Intracranial Pressure Spectrum Disorder (ICPSD). In my case, it the initial diagnosis was Idiopathic Intracranial Hypertension, the result of a neck injury. At least that’s when the symptoms that seem to be relieved by the shunt appeared. This purpose of this site is to tell the story of what having a shunt has been like, insights I’ve had as a shunt patient with medical training, and where I think shunt treatment needs to go. I want to help others understand their condition better and hopefully live a better quality of life. Having a hole in your head and a tube in your brain isn’t much help if you can’t get out of bed or engage in activities that bring you satisfaction.
Nothing herein is intended to be critical. ICPSDs have only recently been recognized as real, explaining a handful of conditions that have confounded medicine for over 20 years. The reality is that right now, there are only a handful of specialists, chiefly neurosurgeons and neurologists, at a few centers around the nation, that are willing to step in and treat this condition.
The reality of ICPSD treatment is this: it is in the early stages. Methods and devices are evolving to meet the need of an adult population with an ICPSD. Basically, diagnosis of an ICPSD means too much blood and/or cerebrospinal fluid is being retained in our central nervous system (brain and spinal cord). Excess fluid leads to excess pressure which can damage the brain directly including the optic nerves/auditory nerves, as well as stress parts of the brain that control our bodies’ functions including blood pressure, body temperature, weight, sleep cycles, and others, and is linked to conditions such as fibromyalgia and dementias.
My experience thus far has been the equivalent of Alice falling down the Rabbit Hole. I’m told I fall in what is believed to be 20% of patients who develop secondary symptoms after shunting. The experience has not been without positive results, however, including a significant drop in a severe and debilitating chronic “fibromyalgia” pain, as well as an improvement in my physical function. Understand that I have been dealing with symptoms that were relieved with the shunt in March 2017 since a neck injury in mid 2007. There is no doubt the shunt helped me, no doubt it was the best option at the time. It hasn’t been perfect, but after six months of living with it, I believe I know a few things that can help.
It’s my hope that telling my story helps somebody else be more informed and less surprised/confused by their ICPSD and it’s treatment. Don’t use this information to make major health decisions without consultation with your physician. It’s just here to give a little more understanding into this condition and treatment from someone who has and is currently undergoing it. I have a fear that if I don’t put this information out there, it might not get to somebody who needs it. It takes a lot of my available energy to do this; as such, it may take a while between additions and updates.
I received a question from Yvette on ShuntWhisperer:
“Does moving to a sunnier, dry climate at higher elevation help? Or maybe to the coast to help alleviate the barometric pressure? Or is there no escape?”
Short answer: Yes. Heck yes, there is escape. I started doing something similar last summer, moving to higher altitudes/lower barometric pressures to escape the oppressive heat/humidity of Central Virginia, conditions that were robbing of my ability to function. I continue to do so as needed, finding that driving to and staying in an areas a mere 1000 ft higher with a barometric pressure 40 or more millibars lower changed my condition like flipping a switch. It was uncanny.
Let me elaborate on why certain areas might be beneficial for ICPDD sufferers. Most of us are puppets to changes in barometric pressure that accompany normal weather changes. Any neurosurgeon/neurologist that tells you that barometric pressure cannot possibly affect ICP is ignorant in a a dangerous fashion, IMHO. Barometric pressure changes are very significant; as an example, here in Virginia, the barometer changes 20-30 mb (millibars) every 7-10 days as weather fronts pass through. Looking at the significance of that change, we find that ONE millibar is the equivalent of TEN mm of water; thus, a change of 30 millibars exerts an increase on tissues exposed to air pressure of 300 mm H20. Now, look at the area of tissues exposed to this pressure: skin and the lining of the lungs are the chief areas. The average person has a surface are of skin of 15-20 square feet. The lungs, however, have a huge surface area of tissue, 80-100 square YARDS, translating to 720-900 square feet; add in the surface area of the skin, and we can safely assume an affected body surface area of up to 1000 square feet. That barometric pressure change of 300mm water per square inch from a mere weather phenomenon converts to a “mere” 0.428 lb/square inch, or 61.6 lb/square foot (!). Apply that to the area of the skin and lungs, and this change in weather causes a change in pressure on skin and lungs of…1000 square feet of tissue filled with blood vessels being pressed against the body with a force of 0.428 lb/square inch, 61.6 total lbs/square foot, and:
61,600 lbs of total pressure exerted on the 3000 square feet of skin and lungs. At the high end. Variable of skin area to body volume enter, but this is significant. It raises intra-abdominal and intra-thoracic pressures, condition known to decrease vascular drainiage from the skull; ICP increases and Starling Resistor functions become factors…all of it bad for ICPDD patients.
Ultimately, I believe these changes affect the dynamics of blood sequestration inside long bones and the skull. Blood and other fluids are pushed from the vessel in the skin and lungs and end up trapped in areas where atmospheric pressure doesn’t reach. Teeth as well, if you want to be technically accurate. Is this the mechanism that affects our symptoms? Not certain, but it is a good argument, because almost every ICPDD patient relates that their ICP varies directly with changes in barometric pressure. Shunted patients have a different sent of symptoms than non-shunted patients; increases in barometric pressure cause increased CSF flow out of my shunt.
Now let’s throw in another wrinkle: atmospheric infrasound. Severe weather systems produce very low frequency pressure waves that can travel hundreds of miles at hundreds of miles an hour. Infrasound is known to be deleterious to physical and mental human physiology. Last summer, after I got my shunt, I had just begun to make the connection between barometric pressure and my symptoms, but I also noticed something else: there were times when I would feel badly when there was a severe storm approaching two to three days out. This was well before any changes in the barometer associated with these fronts occurred. I remarked to Trina there was something about these storms, especially those with severe thunderstorms and tornadoes that was beating me down, and it wasn’t barometric pressure or heat or anything I could put finger on. It was worse after my shunt for some reason. Then I happened across and article on Atmospheric Infrasound and Associated Effects on Human Physiology. The study set up elaborate devices to measure “sound” too low in frequency to hear, but recognized to affect blood flow, cognition, heart rhythm – pretty much everything in the human body to one degree or another. Effects were chiefly psychologic, creating feelings of despair, depression, hallucinations, and more. Changes in heart rhythm were notedFurther, athletic and cognitive performance fell off dramatically as this infrasound became stronger. I believed this was the source of my peculiar response to storms two days away.
Often, there was always a storm two days away. But it was the bad ones carrying thunderstorms and tornadic activity that beat me down the worst.
Recently I moved to a location in the isolation of the mountains. Paradise, to be sure, but at the elevation and location, a lot of winds. Stronger winds tended to make me feel poorly. Then, in mid-April, the strangest, strongest confluence of weather factors came together to leave me so sick and weak I couldn’t get out of the chair I was sitting in. I remember strapping on my CPAP mask and turning on my oxygen generator at 5:30 pm. I woke up at 7 am. The storm system had dumped 6 inches of rain in our area and I’m told brought epic lighting. I don’t remember a bit of it, and I love a good lightning show. My house has a metal roof, and I don’t remember any sound of rain on the tin roof. The storm spawned several tornadoes to the south. I was essentially passed out in my chair with an oxygen mask on. I managed to screenshot the system before I passed out:
Back to Yvette’s question about moving to an area that might be more suitable to persons susceptible to mere changes in the weather. The answer is a definite yes, and IMHO probably and worthy of taking a couple of weeks vacation to such a place. Such areas in the United States are going to be confined to areas west of what is known as the “tornado line”, where cool dry air moving east from the Rocky Mountains collides with warm moist air being pushed up out of the Gulf of Mexico, spawning thunderstorms of epic proportions and of course, tornados. I had researched where the most stable weather areas in the states were, and the southwest fit the bill perfectly, most especially Arizona with its Medical Marijuana program. I lost Trina before we ever had the chance to go to Concho for a few weeks to see if improvements in our symptoms would make the move and change in lifestyle worthwhile. New Mexico and Nevada also seem to be areas of opportunity, with changes in barometric pressure a mere 5-10 mb every two weeks as opposed to the average 20-30 every 7-10 day cycle we were seeing here in Virginia. As far as coastal areas are concerned, I’d say it depends on whether a person can tolerate the higher barometric pressures seen at sea level, and if the coastal area is in a stable area with regards to weather. In short, ICPDD patients all have different phsyiologies; shunts/stents further complicate the picture. As far as I’m concerned, I’m ready to go live anyplace that works, even if it means being a migrant nomad, sleeping on a cot in the back of machine shop, pushing a broom and emptying trash in exchange for a degree of improved physical comfort.
My ICPDD has taken everything from me except for my life. Some days I sincerely wonder if that is the day that something pops/kinks/blocks/clusterforks and I’m off to maybe see my sweetheart again. Until then, I’ll continue putting my experience and research here. Right now I’m extremely interested in infrasound, and a quirk in its properties that would allow merely wearing headphones with music to cancel it out. Not sure yet, but right now a mix of Jack White/Lynyrd Skynyrd/Gangstagrass beat in my tinnitus ridden ears, and I feel as good as I usually feel.
I’m going to head to Eastern AZ later this summer once I work out the AirBnB and how to get there on the cheap. Maybe FedEx myself in a large box. At any rate, Yvette, Yes, moving to a different climate, probably dryer, cooler, higher in elevation, with boring weather patterns, does seem to help ICPDD patients. Dr. Kenneth Liu at Penn State Neurologic Services in Hershey, PA, told me at an appointment earlier this week that some of his patients have relocated to AZ for its climate, with satisfactory result.
More will come. The more I research the topic of infrasound, the more convinced I become of it’s significance to ICPDD patients. I told another contact I was at a point where I need to start a MindMap, as I believe I may have found another piece to the puzzle of ICPDDs vs. Weather, a piece called density altitude. All this is little more that intuition and gut feeling trying it interpret what I’m personally experiencing. In the meantime, I’d like to ask for prayers as I leave the house where Trina and I lived for a different place, picking through the pieces of our life together cut short by her ICPDD. Prayers and comfort to all, and prayers to our doctors for insight, compassion, and vision as they seek to treat a condition that seems completely elusive and not as rare as it represented to be.
In service to God, in memory of Trina; may these words help others.
You’re always in my heart, sweetheart. I miss you every moment.
If you are the caregiver, spouse, partner, or friend of someone who has been diagnosed with what is currently referred to as “Intracranial Hypertension” or “Pseudotumor Cerebri”, it is important that you understand what this disorder is and the effects it may cause in the patient.
I speak as both an IIH patient with a VP shunt and the caregiver to my wife. Yes, we both were diagnosed with IIH. We both followed what I refer to as the Neuroendocrine Theory of IIH; tragically, before she could be treated, she succumbed to they physiologic and psychologic effects of her disorder despite my pleading with physicians to help her. I have experienced everything I am conveying here with complete honesty and sincerity.
Forget what you think you know about “Intracranial Hypertension”. “IIH” patients are very ill. Cancer Ill, in my opinion . We’re talking about a disorder that damages the physical structure of the brain. Very, very serious. Don’t let anyone tell you otherwise.
The major problem faced by “IIH” patients: it just doesn’t show on the outside. No bloody bones protruding, no disease process that is well understood and routinely treated. Just the person telling you “I don’t feel well!” and acting strangely, which may alienates you and others. Most “Normals” don’t know how to take this, or pull away from what is simply a very ill person who is hurting – or worse. This is a subjective disorder surrounded by controversy in the medical field. In late 2017, a neurosurgeon offered this opinion: “if you had 100 neurosurgeons/neurologists, 50 of them would deny this condition exists. Of the remaining 40 would acknowledge there was a problem but offer no treatment. Of the remaining 10, 7 or 8 would treat the disorder with medications and lumbar punctures; only 2 of the original 100 would offer any direct (surgical) intervention. Plus, nobody is sure of what causes the disorder to develop.
Hopefully this Guide gives you an idea of what is really going on.
Start with the term “Intracranial Hypertension”; it’s misleading. This is not “hypertension” like “high blood pressure”. This is increased pressure of the two fluids, blood and cerebrospinal fluid (CSF) inside the skull. A more accurate term I use is Intracranial Pressure Dysregulation Disorder (ICPDD). The basic outline:
The brain and spinal cord are encased in a tissue sac called the dura. They are further encased and protected in a hard shell of the skull (cranium) and the spine. There is a limited amount of space for the contents of the brain, spinal cord, and two fluids; this space is essentially watertight and airtight, with minimal extra room for anything else. ICPDD patients experience a disruption in the balance of fluids flowing in and out of the brain/dura. The patient’s normal physiology that regulates this balance is disrupted. The end result is an abnormal accumulation of either or both fluids inside the very confined space of the skull and spine. This results in increased pressure in that very confined space. The brain is literally squeezed in a liquid vise in the confines of the skull. Evidence of this is seen when the optic nerve(s) are visibly damaged by fluid pressure, threatening eyesight. Other patients have deformation and damage to their pituitary gland, potentially crippling a critical endocrine system and leading to pain, fatigue, and intolerance to exercise and exertion.
To say that pressure on the brain is a problem is understatement. The brain is an organic computer with the consistency of firm tofu. It’s mostly fat and water. It is divided into areas that control nearly all of the functions of a person’s body such as temperature regulation, energy, blood pressure, and thyroid function to name only a few. Additionally, areas of the brain control memory, mood, thinking ability (cognitive function), and sleep cycles. Increased I pressure on these areas understandably causes alteration of the function(s) those areas control; yet, in my experience, the response of physicians has been to tell me I’m “Hypervigilant” (pay too much attention to the symptoms of my disorder; these symptoms frequently keep me bedridden, have cost me my livelihood, financial stability, by wife…so, yeah, I sorta pay attention to them). Other labels are “psychosomatic”, “Munchausen-esque”, and “hysterical”, the irony of which would be hysterical if it wasn’t so tragic. All while telling me there is little understanding of “IIH”. Probably the most epic experience was when I was seeking emergent care from a neurologist; as I vacillated between misery an agony on one side of the desk, the neurologist read my MRI report and said “well, your MRI doesn’t show any changes in your brain structure, so I don’t believe your symptoms are due to your Intracranial Hypertension, if you actually have it. Besides, I can’t take your account of your symptoms into consideration because you’re the patient. I have to rely on test results.”
True story. More common than I could have ever believed.
The result in a patient with an ICPDD is a group of symptoms that would be expected to mimic damage to the brain, which is exactly what is happening . This is the basis for the origin of another term for an ICPDD, Pseudotumor Cerebri (PTC): literally, False Brain Tumor. Doctors treating the earliest ICPDD patient noted them to exhibit symptoms that would normally be associated with a brain tumor, but no such tumor can be found on MRI or CT scan). Referring to my experience with the neurologist who told me I couldn’t be sick because my MRI “looked good”: changes in brain structure don’t happen overnight. It takes time, and are preceeded by symptoms of increased intracranial pressure, some listed below. A short list of these possible symptoms include:
Memory Difficulty: searching for words
Cognitive Difficulty: performing simple math, taking longer than normal to process information
Weight Gain (often thought to be the cause of ICPDDs, may actually be a symptom of increased pressure on an area of the brain that controls metabolism
Difficulty walking (Gait Disturbance)
Intolerance to hot/cold
Vision problems due to pressure and/or pressure-related damage to the optic nerve.
Anhedonism, or lack of interest in pleasure activities, including sex
Ringing in the ears (tinnitus)
Insomnia, which if prolonged, causes further difficulties associated with sleep deprivation
Fibromyalgia Pain/Exercise Intolerance
Increased risk of Hemorrhagic Stroke due to increased pressure in the blood vessels of the brain*
Sensitivity to light/Intolerance to light/photophobia*
*These symptoms were suggested by readers to be added to this “short list”; a reminder that symptoms vary among ICPDD patients; more significantly, this is an example of my hope that by sharing our personal understanding of these disorders based on our actual experience as ICPDD patients will advance and improve treatments more quickly. #CrowdHealing (before anyone asks, yeah, the Twitterfeed is coming…)
These are but a few of the more common symptoms There are many more. Try this exercise. Buy a block of firm tofu; Its about the consistency of the brain. Squeeze it, release it. See how much pressure is required to leave a dent. How much is required to make tear in the surface, to deform it beyond its ability to return to original shape. Now imagine each damaged area as controlling a part of your loved one’s body. That is literally what is happening in their skulls as cerebrospinal fluid both expands the brain from within and presses on the brain in the space around it. Blood swells the vessels of the brain and further adds to the pressure that has no release because of the watertight, airtight manner that the Central Nervous System is enclosed.
Further, changes in conditions such as barometric pressure and temperature (aka weather) can cause aggravation of the symptoms. Certain foods or activities can worsen symptoms as well. Each patient has both commonalities and unique individual consideration. Perversely, the medications used to treat increased ICPs can cause some of the symptoms of ICP.
Your loved one will experience fear at being betrayed by their own brain as well. They may look “normal” on the outside, but inside, the most critical organ in their body is being subjected to conditions that can cause them to seem to be a different person. And since the brain is the CPU for the functions of the entire body, their miseries are not confined to “headaches”.
What they need from you is unconditional love. Drop everything else, give them the support they need. I’ve been on both ends, a patient, and a caregiver. The frustration, the fear is paralyzing when you’re the patient wondering what is happening. The tendency is to dismiss the patient because there are no bloody bones sticking out anywhere, but trust me, that would actually be a blessing because it would likely get more attention.
Causes of ICPDDs are controversial, although recently, after 18 months of research, I have a working theory of how I developed IIH. In my case I can pinpoint the day and the event that started mine. Same for my wife. Incidents of trauma to the neck with later aggravation. For others, it can be prolonged use of certain drugs such as birth control or antibiotics. If you’re reading this, you’re likely a male in your early to mid 40s, as the most common ICPDD patients present as female, in their 40s, considered overweight by the medical profession. That weight is often blamed for the disease, but don’t be so easily swayed. Remember that block of tofu? Imagine if you squeezed too hard on the part that controls metabolism…most ladies say their weight “just came on” in a short period of time with no change in their eating or activity habits. Unfortunately the extra weight becomes an issue, and losing the weight helps most patients significatly, but don’t blame the weight or the patient for the disorder.
And after being diagnosed with an ICPDD? Consider this pull quote from this publication:
“…pseudotumor can cause chronic disabling headaches and visual complications. Therapy is sub-optimal, symptomatic, insufficient, and often complicated by side effects…”
Pseudotumor Cerebri and Ciprofloxacin: A Case Report
Treatments for ICPDDs currently consist of drugs that often have aforementioned significant side effects, or international surgeries to relieve pressure on the brain such as shunts or venous stents. All options are difficult and life changing. You need to love the person, support them, understand they can’t control what is happening to them, and are frustrated at not being able to do what the used to do, want to do, or what other people want them to do.
More information can be found here on ShuntWhisperer. Com, as well as the Intracranial Hypertension Research Foundation (IHRFoundation.org), the National Organization of Rare Disorders (RareDiseases.org), and others that can be found under search terms such as “Intracranial Hypertension Research”.
The bottom line is that your loved one is suffering from a disorder that is literally squeezing their brain, the organ that not only controls their bodies, but also houses their personality, the invisible pattern of electrical activity that is them, that is their soul. Put yourself in that position for a moment, or longer, and imagine feeling like an unseen force is pulling the strings and you’re the puppet forced to respond…or not.
As if this isn’t enough of a challenge, the current “Opioid Crisis” is making pain associated with “IIH” an inconvenient symptoms to treat. Some physicians even go so far as to tell patients their pain is no big deal, just live with it. “I’d rather see you in pain than give you a prescription for a narcotic” is a phrase I’ve heard on more than one occasion. What I have found, however, is that the pain created by pressure on the pain centers of the brain responded best to small doses of acetozolamide; maybe this is an answer for someone else reading this.
What to do for a loved one who has suddenly and seemingly inexplicably lost their ability to function, work, be a parent, partner, or engage in leisure activities? Simple: Give them love, unconditional love. Give them space to be sick. Give them support. Give yourself space, find support for yourself. This is a serious disorder, every bit as serious as cancer, but not nearly as well understood, and currently, IMHO, not yet nearly as well managed. Hopefully this will improve in the near future. God’s Blessings to all.
February 3, 2018, revised May 1, 2019
Thinking of you every day, baby. I miss you so much…
Nothing like what the neurosurgeon said it would be. “Infection”, with a shrug of the shoulders, no big deal, when I asked what my risks would be. Quite possibly what he believed. Not at all what I got.
Imagine brutal HALO free-fall onto a demon’s roller coaster that dropped off the tracks in the middle of a triple loop into a bottomless pit without safety harnesses, and that’s an outline of what I endured for four months after the shunt. And don’t get me wrong, there were some enormous positive outcomes as well, improvements in long term pain and fatigue as pressure on critical areas of my brain was relieved and I began to recover; it’s my opinion that it has kept me alive. But: Holy Acid Trip, Batman, I wish I had been prepared for the beatdown I received so I could have faced it head on, KNOWN it might be coming, instead of being sucker-punched. Sucker Punched, I believe, to everyone’s surprise, including my neurosurgeon, trying to help, frustrated at not knowing the WTF of why the treatment was going sideways.
I was a dentist for 25 years. I performed a lot of complex surgeries, sedations, cut pieces from one part of a patient’s mouth and sewed/screwed/glued it to another. I spent A LOT of time preparing my patients for their post-op experience before I ever laid a scalpel on them. Well, that level of attention didn’t seem to apply here. Turns out that ICPDDs are in their infancy in the practice of medicine, thus the information that could prepare a patient for a Lewis-Carrol-meets-Hunter-S.-Thompson-esque outcome doesn’t exist. Most PCPs don’t know what “Intracranial Hypertension” is, much less how to treat it. Even amongst NeuroDocs (neurosurgeons and neurologists), there is no consensus as to the cause of ICPDDs and how to treat them. There is even a vocal group of doctors who deny they exist (I would love to let you guys spend a couple of days in my head…).
I went into the shunt surgery believing I would end up with the blessed relief I had gotten from my diagnostic lumbar puncture. I actually did get a lot of relief from pain, fatigue, cognitive difficulties, and other symptoms ICPDD patient’s struggle with, but I also got the Bonus Symptoms associated with unstable intracranial pressures, Bonus Symptoms that nobody seemed to understand.
The purpose for ShuntWhisperer was initially just to tell that story. I thought it might give somebody else a reference point, a warning, an explanation should they find themselves on the same path. But then I was hit with “bitchslap #2”, sort of a Buyer’s Remorse: it was revealed at my first postop with the Nurse Practiioner that there was essentially zero understanding of what was actually going on in a human skull, no way to measure the oh-so-important ICPs without drilling a hole in my head and inserting a “bolt”: quite literally a bolt with a a pressure transducer in my skull. In an Intensive Care Unit. Then she told me there was no follow-up program for shunt patients, “just come back if you have a problem.
Nothing like treating a problem instead of preventing it. Not to mention the loss of valuable data from a pool of patients that medicine admits to having zero knowledge of/about/how/why that a follow up program, a simple questionnaire might provide.
At that point, the purpose for ShuntWhisperer.com changed. I had become a member of support groups for patients with ICPDDs, and all I saw were patients just like me. Confused, struggling, refusing to give up but without any support. And some who where actually doing well.
After graduating from dental school in 1986, I did an optional residency in a hospital. It was worth 8 years of dental school. Exposed to Medical disciplines including Emergency Medicine and Anesthesiology was priceless, but without a doubt the group I came to admire the most was Internal Medicine. Physicians with intimate knowledge of human physiology who often collaborated on cases where the patient presented with a set of symptoms without a known cause. These docs were brilliant and were not satisfied until they knew exactly what had landed a patient in the hospital, a knowledge used to treat the cause of the patient’s condition, not just the symptoms.
They became my role models.
Now, faced with what appeared to be a terrible lack of understanding of a condition for which I had just had a tube stuck into by brain to drain cerebrospinal fluid, I was literally terrified. I swallowed it down and started paying attention to the particulars of my condition.
I began to see patterns; from patterns, theories. Testing of theories. My theories resulted in methods of managing symptoms. That management led to more days of function, fewer days of feeling so horrible I could not get out of bed, watching my life dwindle away one day at a time with no explanation.
Then it happened: Inexplicably, against all odds, my Trina was diagnosed with Intracranial Hypertension.
What are the odds? A married couple with an extremely rare disorder? Outside of a care facility, support group, or other instrument that brings ICPDD patients together, few of us know another person with an ICPDD…much less be married to one. Why? What is the commonality?
Odd, no physician has ever considered it odd yet. Asked that question: why?
(pssstttt: we both had multiple, severe neck injuries that preceded the onset of symptoms).
At that point, when Trina was diagnosed, it was all bets off. She had watched me go through hell with my shunt. She was scared to death. She had migraine headaches so bad that she couldn’t get out of bed. And then, just then, at that point:
Our neurosurgeon moves. To another hospital. Another STATE. He said he’d take our records, but it would be about 3 months before he could get us in, to treat my unstable shunt, to treat Trina. And considering it took me 3 months to get a consult appointment with him and another 3 months to get treated, and that other neuros treating ICPDDs were few and far between, it seemed as if there was no choice. To his credit, he did get us in quickly and started making plans, but three months of the psychological effects of a daily migraine that left her bedridden with ice packed around her head, the physical effects of the pressure on the centers of her brain that controlled her mood, memory, body temperature, functional capacity, the literal pressure that in combination with some of the most cruel and discompassionate dismissals of suffering by so-called “healers”, all came together on one morning in October, when with no warning, no good-bye, no note, nothing, not to mention being totally, completely out of “character” with the bright, beautiful Trina I knew and loved, she put a gun to her head and ended her own suffering, a result of having to cope with this disorder and its symptoms for an absolutely inhumane period of time. Make no mistake: the person that ended their life that October morning was not the Trina I new and loved; that person had been taken by the disorder. I was doing everything I could do, firm in my belief that if we could just hang on until she could get treated, she would be better…
It’s the day after Christmas. Just recalling that moment still freezes me up. It was so unnecessary. So preventable. She was the person everyone looks for: the soul-mate, the one human being who really gets you. And this disorder took her from me.
So now, the purpose of this site, my mission, my only purpose to keep going, is to help others struggling with these disorders. To challenge doctors with my theories, right or wrong, but to at least get them TALKING TO EACH OTHER. Hoping, praying that something here sparks something in somebody’s head that leads to an advance that wouldn’t otherwise come for 10 years. Not for me; I don’t care if anyone remembers me. For Trina, to remember her; for those suffering this disorder, in service to God. In one of the creeds of the Knights Templar, the words:
”Non Nobis, Domine, Non Nobis, Sed Nomini Tuo Da Glorium”: Nothing for us, Lord, nothing for us but for the glory of thy name.
Members of Support Groups for ICPDDs frequently refer to themselves as warriors, and they are no less. I truly pray that this site becomes a “weapon” in that battle by disseminating information and pushing for change an improvements. Not to demean, not to blame; I can’t imagine the responsibilities of the neurosurgeons and neurologists who, in my altruistic sense, are wrestling with the problems of their patients. I pray for them especially, and suggest that we all do as well.
I also ask that you remember one beautiful woman named Trina, my wife, who was taken by this disease, who I hope to see again someday, and who I hold up as an example of what I hope to help prevent.
The latest installment in my ongoing narrative of the effects that barometric pressure has on my condition, and presumably, others as well. The reason I have time to do this today is, of course, a rapidly dropping barometer accompanying a strong weather front. December 23, 2017.
I was recently surprised during a visit with a new neurosurgeon to discover that he was not aware that changes in barometric pressure, or even weather, were issues for his ICPDD patients. He seemed as knowledgeable as a physician could be about this new class of disorders, and he eagerly and actively accepted patients into his care. Thus, when I brought up the issue of barometric pressure and its effects on my personal disorder, it surprised me when he related that changes in barometric pressure were not a problem for the patients he saw.
Thinking about it afterwards, I can see how that impression could be an honest error, although having conducted polls of members of various support groups I belong to, it seems that almost everyone knows there is something about weather that affects their ICPDD symptoms for better or worse. Most seem to relate impending stormy weather with a change in their symptoms, usually for the worse*. Based on the information that most ICPDD patient are given to work with, I’m sure some know that some days they are better or worse than others. Another group may associate impending weather with a change, usually worsening in their symptoms. Some have discussed changes in altitude, which translates into changes in barometric pressure, as affecting their symptoms. Perhaps patients aren’t questioned about they notice any factors that trigger their symptoms.
Then there’s me, who is so tuned in to my disorder that the neurosurgeon asked the fair question “Do you think your attention and management to your symptoms is making them worse?”
Really, a very fair question, and I was impressed with this doc’s diagnostic thought processes. My answer is “No; I only started managing my own symptoms to the degree I’m able after months of study of my own disorder. Since starting to manage those symptoms based on my study, I have more “good” days, fewer days when I can’t get out of bed, and have been able to formulate theories about ICPDDs when unfortunately, consensus amongst medical professionals is rare (note that I said “consensus”, or “agreement”; the docs I see are desperately trying to get a handle on ICPDDs. The problem is that none of them suffer from one. That’s where I’ trying to help.).
Is my attention to and management of my ICPDD symptoms making my condition worse? Only if swimming to the surface and taking a breath when you realize you’re drowning makes your “drowning disorder” worse.
Disclaimer: I don’t know that my ICPDD is the same as somebody elses. Even if the cause is the same (I believe mine is Venous Outflow Insufficiency), it’s not likely that each patient shares exactly the same physiology. BUT: there are immutable laws of physiology that apply to everyone, and as such, probably bear consideration. I don’t know if I’m 100% right, but I’m definitely onto something; I’m not trying to get credit for anything except maybe to get people talking instead of just telling us how much medicine doesn’t know about ICPDDs. Remember this as you read the following:
BAROMETRIC PRESSURE/WEATHER: For the purposes of this segment, we’ll consider them one and the same, as I know that barometric pressure changes accompanying changes in weather and changes in altitude definitely affect my symptoms in a predictable manner. Short version: increases in barometric pressure cause and increase in symptoms that I associate with increased ICPs. Before I was treated with a VP shunt, high pressure systems made my head feel like it was going to explode. Extremely low barometric pressures as seen in hurricanes and severe storm fronts very simply put me in bed, barely able to function. My best days were overcast, but not rainy days. After I was shunted, barometric pressure still affects me in the same manner, but my symptoms are different because of the shunt. That last part took me three months to figure out, but it is fact. A couple of stories:
The first one I love to tell. I hate that my surgeon had stopped ICP monitoring during shunt placement, because I (and a lot of others) would love to have know what that monitoring might have told them. The day I had my diagnostic Lumbar Puncture (LP), my opening pressure (OP) was only 17mm H2O; it took nearly an hour to drain 30 cc of CSF, whereupon my closing pressure (CP) was 16. Most would look at the OP/LP values and say “That’s too low for a diagnosis of “IIH”.” However, the truth is that the numbers currently used to designate “high” and “low” ICPs have not basis in science.** I had great relief from my symptoms of pain, cognitive difficulties, etc. Based on the positive response, my surgeon recommended that I might benefit from a shunt; on the day of that consultation, I was feeling very uncomfortable with increased symptoms I associated with increased ICPs.
Fast forward five weeks to March 23rd: I was counting the days till the shunt; it seemed that the onset of unstable spring weather was making my ICPDD symptoms swing wildly, and I felt I was deteriorating exponentially. On the morning of the shunt surgery, I was particularly uncomfortable, my head feeling as if it was going to explode. “If this doesn’t work,” I told my neurosurgeon, “we’re going to have to scramble to find another solution.” When I woke up in postop, I was groggy, but the sensation that my head was going to explode had seeming disappeared. My surgeon came by to check on me and related that “I appeared to have had some pretty high pressures, because when (he) opened my dura for the proximal catheter of the shunt, my CSF literally shot across the room.”. Contrast that to the day of my LP, when I was actually pretty comfortable, despite feeling lousy after my angiogram. Could what I emailed to my surgeon as “Post-Angiogram Blues” been a result of the procedure, or the fact that the day between the angiogram and the LP was a near record low pressure for the area, and the lowest in the months of February and March 2017? Maybe a little of both?
Look for yourselves. These are screenshots of barometric pressure for Charlottesville, Virginia, with dates of procedures shown:
BAROMETRIC PRESSURE GRAPH 2/16/2017, DAY OF DIAGNOSTIC LP – OPENING PRESSURE 17mm H2O, CLOSING PRESSURE 16mm
BAROMETRIC PRESSURE GRAPH 3/23/2017, DAY OF VP SHUNT PLACEMENT – “YOUR CSF SHOT ACROSS THE ROOM.”
What these graphs show is that on the days of my Angiogram and LP, the area was experiencing a near record low barometric pressure. I always associated an extremely low barometer with feelings of “weakness”, leaving me bedridden. I’d further postulate that the this also explains the fact that it took nearly an hour to drain 30 cc of CSF, and that there was no significant difference in the Opening/Closing Pressures because…wait for it…
…ICPs are proportionally affected by barometric pressure. This theory is given further merit by the fact that on the day of the shunt, I was experiencing possibly the worst high pressure symptoms I’d had to that point, and the fact that I hosed the OR with my CSF, under increased pressure due to increased barometric pressure.
Why? It turns out that barometric pressure units are very significant compared to the units used to measure ICP. One millibar, or hectopascal, is the equivalent of almost 10mm H2O. Thus, the difference in barometric pressure of 28-30 mb between the days of my LP and Shunt translate into 280-300mm H2O. Normally not a problem unless you suffer from and ICPDD; now, it seems to be a big problem.
I believe this is one of those physiologic commonalities we all share. Interestingly, after I received my shunt, my symptoms changed. Now, instead of the severe pressure, I had a feeling of “lightheadedness” that I now, thru bitter experience, associate with “overdrainage”, or excessive loss of CSF. The problem now was that I felt that way 95% of the time. When the barometer was low, I still felt drained, but when the barometer rose sharply to high levels, I had a paradoxical “sensation” of pressure in my head and at the base of my skull, but still had the overdrainage symptoms. As it turns out, the barometer is still affecting me in the same manner, but because I have a shunt (“an extra hole for CSF to drain through”), my symptoms are different, but no less debilitating.
My shunt has been like trying to balance a marble on top the end of a sewing needle with the other end on a granite slab. The tendency has been to require ever-increasing pressure settings on my shunt to achieve ever shorter periods of “stability”, until in early July, the whole business went sideways and the shunt could not be turned up further. I’ve been managing my symptoms by managing my cerebral perfusion and Mean Arterial Pressures in response primarily to symptoms, and the nature of those symptoms always follow certain stimuli such as barometric pressure. Now, I believe my shunt is causing CSF Hypo-tension in the following manner:
When blood flow to my brain (cerebral perfusion) is at the low end of the scale I use to measure it, I feel very lightheaded, sleepy, weak. I know it’s due to lack of CSF because these are the same symptoms for which I was hospitalized in mid-June due to lowered a “neurologic wane/depressed state of consciousness”, symptoms that resolved with in 8 hours of turning the shunt up to its max setting. Remember, CSF is made from blood, and the amount of CSF produced and absorbed depends on the amount of blood flowing into and out of the brain. In my case, at low perfusion, I don’t make enough CSF to make up for both the normal losses of my venous outflow AND the seepage/leakage through my shunt.*** During these periods, the flexible components of my shunt are soft and shrunken as if there is not a lot of pressure in them. I believe a more appropriate term for this condition is Shunt-Dependent Underperfusion as opposed to Overdrainage.
I have a right jugular vein that has been described as between 60 and 80% stenosed at the level of C2. Venous drainage from the brain favors one side, usually the right, for reasons I don’t know. At any rate, one of the main veins that drain my brain is badly narrowed. I’ve discovered that if my cerebral perfusion exceeds a certain limit, I start todevelop sensations of pressure at the base of my skull and inside the right side of my head. My right ear turns red and swells noticeably compared to the right side (see pic). Most significantly, my shunt swells up; the catheters and antechamber become tight and enlarged, and at times the skin over the shunt is painful to touch. Why?
Simple. The pinched/narrowed jugular. At a certain point, more blood can flow into my brain than can flow out. I’ve discussed this as the “Cerebrovascular Theory of ICPDD”; blood backs up in the blood vessel of the brain, the vessels swell, displacing brain tissue and causing the brain itself to swell. The only place the brain can swell towards is where there is CSF: the ventricles inside the brain and the subarachnoid space surrounding it. Because the area inside the skull is fixed, CSF is now pressurized, blood is now more pressurized, brain tissue swells and….
…in my current condition, CSF is forced out of my shunt under high pressures, accounting for the swelling of its components. CSF is only made at ~.35cc/minute; my shunt drains at .5 cc/minute under “normal” ICP. Now, however, I have higher ICP, greater flow out of the shunt in addition to CSF absorption by normal venous pathways, and I still have a CSF deficit. This explains the feeling of pressure (due to cerebrovascular edema) as well as the “overdrained” feeling due to excessive CSF loss. This is also referred to as secondary intracranial hypotension, or iatrogenic hypotension.
This all leads me to believe that my shunt is only treating a symptom of my disorder – CSF pressurized as a result of restricted blood flow out of my brain. Maybe this is why my particular condition is so unstable. I believe the cause is the narrowed jugular, and treatment of that narrowing with a stent, then assessing its impact on my stability with the possible need to intervene by adjustment, removal, or replacment of my shunt is the next course of action. All I want for Christmas….
My first neurosurgeon told me he was confused by my symptoms. The low LP values. The apparently odd instability of my shunt treatment. I’ve actually been told (paraphrasing) that I am the “unicorn” of ICPDD cases. Here’s the thing: when I was in practice, I learned the most from the cases that fell outside of the normal curve. Cases that didn’t turn out as anticipated despite following all the accepted procedures. Those cases got under my skin, and I took it as a personal challenge to figure out what happened so I might be able to avoid putting a patient into the same situation in the future. I always became a better doctor/dentist/surgeon for the effort. That’s all I’m doing here. It’s a peculiar blessing to have a particularly challenging form of a disorder shared by others AND have the modicum of knowledge necessary to at least draw basic conclusions from observing my own condition in as scientific a fashion as possible. At first it was solely to tell the story of my treatment so that others might not be as…”surprised”…if they experienced the challenging outcomes I’ve had. Then, when my wife Trina was diagnosed (hello…rare condition…a married couple both have it…what are the odds, and more importantly, what is the reason? I believe I know….), I changed mission to find out how to alleviate her suffering and hopefully prevent her from going through what I did, possibly prevent her from getting a shunt. Tragically, help did not come fast enough. Now, having lost my career and my wife/best friend, soul mate to this…disorder…my teeth are sunk in and I will not let go until somebody somewhere listens and for the sake of everyone suffering and ICPDD and being told “medicine doesn’t know why….”. I’m grateful for everything that has been done for me up to this point, but as it turns out, it seems that the a combination of the misfortune of having a New and Exciting Medical Disorder along with the fortune of having a neurosurgeon in the right place at the right time who was at least willing to try this shunt (which I admit likely saved my life despite its unstable nature) has left me with a polar opposite bag of blessings, losses and opportunities. I miss my Leloo; Christmas will never be the same again; but as long as I have a story to tell, I’ll continue to Whisper in the hopes that the right person/people listen….
The Shunt Whisperer
December 23, 2017
ASTERISKY THINGS (Trina’s Humor):
*It is my belief based on observation and recordkeeping of my own ICPDD that ICP increases with increasing barometric pressure and vice versa. For lack of any other explanation, I believe that increasing barometric pressure compresses skin against unyielding objects such as bone and cartilage, compressing blood vessels. This blood is forced into the only structures where the atmospheric pressure changes do not affect their inner pressures. Hard structures with hollow inner cavities filled with blood vessels. The are the long bones, the teeth, and the skull. Interestingly enough, the next time somebody complains about a joint hurting when weather is changing, you can impress them with this knowledge.
**The values currently used to decide if ICPs are “high” or “low” are arbitrary numbers plucked from 30 year old research papers. There is no scientific evidence to support them; further, to say that a value of “24” is “normal” but “25” is “high” makes no sense in this system. ICPs vary widely due to a number of factors, often with a few hours. A patient’s symptoms are a far more important indicator of a disease process; ICP values are merely a snapshot of pressure for that patient, under the conditions observed, at that moment.
***The current generation of shunts are exquisitely manufactured examples of inefficient, analog devices that were originally intended for the treatment of true hydrocephalus in children. They have no active control of valve mechanisms beyond simple springs or weights, and the ball valve design lends itself to “seepage” of fluid below specified “opening” values due to accumulations of proteins or brain cells that prevent the valve from closing fully. When they do actually “open” at designated pressure setting, the valves don’t pop open, but rather creep open to “allow” CSF to flow based on the difference in pressure on either side of the valve – ranging from a slight seep to a full-on gush, again depending on pressure. This process continues until pressure differentials are within specified limits again. Further, at this time, there is no method of non-invasively measuring Intracranial Pressures, and thus determine if a shunt is functioning or not beyond patient symptoms. While inclusion of electronics to monitor intracranial pressures is definitely possible, the challenge of using them in devices that must be subjected to MRI examination has yet to be overcome. They are the best option available if regulation of CSF pressure is necessary.
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,
1) the force exerted on an object by the weight of the column of air above it; affected by changes in weather patterns and altitude
2) the uncontrollable force of nature that can drive make blood shoot out of the eyeballs of a PERSON suffering an coping from an ICPSD
see also: weather fronts, cold fronts, warm fronts, troughs, stationary fronts, Weather.com, weatheruderground.com, and the app “Barometer” on your iPhone ; )
The latest evolution in my understanding of how and why the barometer affects Intracranial Pressure after a doctor told me “(medicine) recognized that changes in barometric pressure affected (IPSCD) patients, but we don’t know why”.
Maybe they do and I’m on a fool’s errand, but in the off chance that one of the two people who read this get something useful from it, here, we go:
Before reading the long part, here are key points in the ongoing question of why changes in barometric pressure are affecting me, and I’m willing to bet apply to just about everyone else:
1) Intact adult skulls don’t expand 2) Our bodies expand and contract in response to changes in atmospheric pressure. 3) Increases in barometric pressure squeeze our bodies, pushing blood into the head 4) Blood vessels in the can head fill with blood if veins don’t drain it off 5) Swelling blood vessels push on brain matter 6) Brain matter expands into spaces filled with cerebrospinal fluid: around the brain and the ventricles within 7) CSF becomes pressurized, and brain stuctures are compressed, causing pain, interfering with functions of the compressed structures (most notably but nowhere near the only function affected is vision), and if not relieved, deformity of the brain 8) In shunted patients, this swelling can cause flow of CSF out of the brain. Over a long term, this can lead to Slit Ventricle Syndrome.
ME AND THE BAROMETER, PART 2
My understanding of why changes in the barometer affect me, and certainly other ICPSD patients, advanced last night after reading this article: “Monro-Kellie 2.0: The Dynamic Vascular and Venous Pathophysiological Components of Intracranial Pressure” by Dr. Mark H. Wilson, a neurosurgeon practicing in London. In coping with my ICPSD I had come to the obvious conclusion that ICPSD conditions (IIH, NPH, PTC) have at their root a failure of a patient’s physiology to maintain a fluid in/fluid out balance in the cranium. Currently, my personal condition is complicated by the fact that my shunt is turned up to its maximum pressure, but I still have symptoms of low ICP. Keeping the right amount of blood flowing to my head has become very important. I had been concentrating on the “fluid in” side of the ICPSD equation using by modifying the method medicine uses to manage ICP in head injuries. I take my blood pressure, calculate the mean arterial pressure (MAP), and multiply it by 0.2. This gives me a number I call the “Cerebral Perfusion Quotient 20”, or CPQ20, representing a very generous portion of cardiac output flowing to my brain; this is simplistic but served a purpose. Tracked over a couple of weeks and referenced with activities, barometric pressure, temperature, and humidity, I was able to determine identify a range where I was relatively comfortable and functional. I have identified certain activities and conditions that aggravate my low ICP, and take certain measures to manage it as best I could. It has helped me to a point to manage my ICP until I can have a shunt revision. I had a passing semblance of control until autumn in Virginia brought with it the wide swings (20+mb every 7-10 days) of barometric pressure normal for the season. The unstable weather has brought with it an instability in my ICPSD.
Barometric pressure changes are known to affect the symptoms of ICPSD patient. In research, I’ve also discovered that it is associated with aggravations of other central nervous system mediated disorders including seizure activity, multiple sclerosis, and dementia. Barometric pressure is literally the pressure that the air around our bodies exerts on every square inch of our skin . Barometric pressure change has always been an issue for me; but understanding why has been an ongoing challenge. I came to an initial part of the answer recently (“Why Barometric Pressure and Weather Affect Intracranial Pressure”). This was so surprisingly simple as to be elusive. In short, changes in barometric pressure cause our bodies to expand and contract; like a balloon in a pressure chamber, our bodies expand with lower pressure and contract with increasing pressure. This expansion/contraction literally changes the volume of our bodies and circulatory system. When the barometer rises, our bodies are squeezed, and blood is pushed into confined areas where air pressure does not directly affect, like the inside of the skull*.
Charting my CPQ20 numbers, I noticed that a drop in barometric pressure also meant a drop in my CPQ20 number. When that number falls below the comfort zone, I develop lightheadedness along with a sensation that my ears were being sucked into my head. My shunt system has several components that change in nature depending on my perception of my ICP. Pliable components of my shunt system, chiefly the domed silicone antechamber in front of the shunt body and the silicone catheter behind my ear became shrunken and limp; the antechamber would become pliable and easy to depress. Another shunt system indicator is the tantalum ball in the antisiphon/assist device behind my ear: at low pressures when I lightly tap the skin over the assist, the little ball rattles freely. These are indicators that there is little to no CSF flowing in the shunt. Contrast this to increases in barometric pressure and CPQ20 numbers above my comfort zone. The antechamber and catheters becomes swollen and very firm, and the tantalum ball doesn’t “rattle”; it might “tick” once, but seemed restrained by the pressure/flow of draining CSF.
I was still confused as to how I could have so much pressure in my shunt if I was “overdrained”, that is, have low ICP. Increases in barometric pressure inevitably lead to this peculiar condition; however, until I read Dr. Wilson’s article, I didn’t understand why. Now I believe I do, and strangely enough, being a dentist has given me a particular insight**.
The cranium is a fixed volume. Intact adult skulls don’t expand and contract. As such, maintaining ICP requires a precise balance of arterial blood flowing into the skull, production and absorption of cerebrospinal fluid, and venous drainage. In calculating my CPQ20, I was looking at blood flowing in. However, as Dr. Wilson points out in his article, CSF is produced and resorbed at low rate of .3-.5ml/minute, give or take. That dynamic is dwarfed by the 700 ml or more of arterial blood that is pumped to the brain every minute. It further occurs to me that the fact that CSF is produced from this arterial blood is important as well, but bottom line: if this blood isn’t drained out fast enough, blood accumulates in the brain.
And that led to this latest epiphany, such as it is in our grand medical cosmos. It’s not an original notion, it turns out, but I still managed to claw my way their leaving a trail of CSF in my wake.
The human brain has been described as “incompressible” in the original Monro-Kellie Doctrine, referred to in Dr. Wilson’s publication, the first effort to explain the dynamics of fluids inside the skull associated with our brains. Brain tissue does have a degree of compressibility: it is seen in cases of hydrocephalus where the brain can be flattened into a thin layer against the skull as excessive CSF pressure. Pressure comes from the network blood vessels in and around the brain. In ICPSDs, blood enters the brain faster than it can be drained away, filling and expanding these vessels. When they expand in the skull, something has to give. In my case, I believe the expanding blood vessel cause the brain itself to expand in segments between the blood vessels. The only space available for the brain to expand “into” is the space occupied by cerebrospinal fluid: the subarachnoid space between the brain and the skull, and the ventricles, hollow cavities in the brain associated with the production, and circulation of cerebrospinal fluid. This pressurizes these spaces and the CSF contained within them. In a patient without an outlet for this fluid, such as a shunt, the end result is pain and damage to structures of the brain such as the optic nerves, the pituitary gland, and others. This is the same process behind hydrocephalus. In shunted patients like myself, it makes for a plausible explanation for why my shunt drains so heavily when the barometer spikes and my CPQ20 is above my comfort zone: a glut of blood is compressing the brain tissue, pushing CSF out of my shunt. When CPQ20 numbers are below the comfort zone, my shunt seems to barely drain owing to a lack of literal “pressure from blood” in the vessels in and around my brain. It explains how I can be living with a shunt that can’t be turned up high enough to maintain an appropriate ICP for me and still have sensations of pressure. And it is definitely related to changes in the barometer, whether weather related or altitude related. I’m writing this the morning after driving to visit my mother; her home is 1000 feet higher in altitude, and according to my iPhone barometer, 30 mb lower in pressure than where I live (interesting fact: one millibar is equivalent to 10mm H20. Average ICP in the adult population is 110mm water; a 30 mb change is the equivalent of 300 mm of water pressure change on my body. Hmmm.). I’ve noticed this phenomenon on other occasions when weather conditions at my home made my symptoms unbearable, but by relocating here, the symptoms usually abate. Barometric pressure is not the only factor I’ve identified: heat and humidity are two others, but will save discussions of those for another time.
ICPSD disorders are very focused on CSF and its management. Dr. Wilson bluntly points out an obvious fact of epic importance: CSF is only one of the two fluids in the skull; blood is the other, and the volume AND FLOW of blood and its dynamics dwarf those of CSF++. Blood volume imbalance is likely one possible explanation for ICPSDs in some patients. Simply put, a failure of the body to balance of blood in/blood out of the cranium leads to pressure on the brain directly as blood vessels fill with blood and expand. Displaced tissues compress the ventricles of the brain and without intervention can lead to damage to the brain, its structures, and the functions of the body those structures control. In my case, pressure forces CSF through my shunt; however, the shunt has a limited drainage rate, and if ICP expels CSF at a rate greater than my shunt system can drain it into my abdomen, in manifests as symptoms of pressure in my head and signs of an engorged shunt system. This explains the paradoxical presence of high pressure symptoms I experience while living with a low ICP. At this point the only management method I have is to lower my barometric pressure, and the only way I can do that is to go to a location at a higher altitude/lower barometric pressure.
This is not the end of this mechanism either. Pressure in the abdomen and chest play a very significant role in not only possibly explaining the development of ICPSDs but their management as well. I’m going to put these related topics into a subcategory under “Topics” entitled “Factors of ICP”. Hopefully readers will find something that sheds light on their own conditions and management. Prayers and comfort to all.
*or the inside of bones/cartilage, giving an explanation of why joints ache when a storm is impending.
**Intact and undamaged teeth are also impervious to the direct effects of air pressure. Teeth also have an internal anatomical space filled with blood vessels and nerve tissue. This tissue can become damaged if it becomes inflamed and begins to swell. The swelling chokes the tiny blood vessels off, thereby causing the tissue to die from what amounts to self-strangulation, the dental equivalent of cerebral edema of the brain.
++Flow is dynamic; volume is fixed. It’s not only how much blood is in the brain, it’s also how fast it flows in and out….
How I felt on the day I received my VP Shunt, when the barometer had hit a near record high for my area, 40 mb above mean. My neurosurgeon told me my CSF literally shot across the room when he was placing the shunt. Contrast this to the day I had my diagnostic lumbar puncture: my opening pressure was only 17cm, but after draining 30 ml of CSF, most of my symptoms and pain disappeared…