#CROWDHEALING VALIDATED: IIH, EDS, & POTS: THE DRISCOLL THEORY (AND NOW, ADRENAL FATIGUE: TAKING IT ON THE LAM)

Starting this weblog over a year ago was primarily borne out of a desire to help with a disorder that even the doctors I consulted had little grasp of, much less the patients.  My theory was that by making my experience available, others might benefit.  Along the way I started noticing certain correlations in my disorder.  Perhaps this might cascade and multiply, bringing better understanding to this potentially crippling class of disorders more quickly than the glacial pace of research and publications – “Evidence Based” science, which is still an important tool in Medicine.  Thus the notion of “CrowdHealing” was borne.

The last 18+ months have been brutal.  Shunt treatment was maddeningly unstable; I now know it was because there was a CSF leak around the proximal catheter for over 9 months.  After healing stemmed the leak, I went rapidly from unstable ICP where I vacillated between too much and too little pressure, to a short period of relative stability, then to a brutal return of symptoms of unbearably high ICP where I vacillated between misery and agony.  After finally getting an adjustment to my shunt, the pressure was reduced, but my brain felt like it had been used to play soccer.  It was my sincere hope that a period of R&R would restore balance, this disorder would stop ruling my life, I could possibly return to practice, properly mourn Trina…

It was not to me. 

I now find myself suddenly extremely sensitive to barometric pressure.  I have always been sensitive to the barometer, but this new condition mimics my post-shunt condition: a few days (at best) of stability at a given altitude/pressure, followed by a gradually reduced ICP.  Worse, it seemed that I could not tolerate the mere 2100 feet altitude of my new home for more than 2 days before my head began to feel empty; after a week I was all but incapacitated by a feeling I associate with excessively low ICP.  Traveling off the mountain to lower altitudes always rapidly alleviated my symptoms of fatigue, weakness, and pain.  A change of a mere 1000 feet was enough; I could almost tell at which turn in the road I was going to start to feel better.

This seemed insane.  After all I’d been through, now I couldn’t rest and grieve in a place that was paradise to me.  Was it real or psychological?  I decided to put it to the test by acquiring a hyperbaric chamber (note: these are not toys.  I don’t recommend anyone else do this at this point.  A doctor’s clearance and order is required to purchase one, and they are expensive, like $5K+ for a basic model (thank you, PayPal Credit).  If you’re not careful, there are a number of ways you can cause harm to yourself.

All that said, within a week of getting the chamber, I had my answer:  it was, without a doubt, the barometric pressure at the altitude of my new home in the mountains that was the source of my New Misery, apparent intracranial hypotension (Intracranial Pressure Dysregulation Disorders are not just high ICP).  A mere 20mb increase in pressure began to alleviate my symptoms; I could feel my spine and head “pressurize”. 

WTF. 

Consultation with Dr. Liu ( I know he winces seeing his name here) led to the possibility of one or more CSF leaks.  At the time I write this, I’m waiting on a call from a CSF Clinic for an appointment.  Yes, I’m living at my mother’s house, 1100 feet lower in altitude, at the age of 59.  It’s actually one of the better things to happen to me in the last 18 months.

Still, it seemed insane that I went from feeling as if my head was going to explode and a return of my pre-shunt symptoms in June/July to not having enough ICP after a mere 50mm reduction in my shunt valve pressure.  It made no sense to me based on what I’d learned to this point.  These numbers are small, but here I was, isolated from  my new home by a tiny change in altitude and pressure that even my damaged physiology should be able to account for…

So I thought.

Some months back, I was contacted by a ShuntWhisperer reader who had an ICPDD attributable to Ehler-Danlos Syndrome, a disorder characterized by loose connective tissues believed to have a genetic component.  EDS patients have a high incidence of ICPDDs, both Intracranial Hyper-and Hypo-tension  She told me about Dr. Diana Driscoll, an optometrist who had EDS as well as a family of EDS?ICPDD sufferers.  Dr. Driscoll relates suffering 10 years of disability due to her condition that left her physicians confounded.  Unwilling to sit on the sidelines, more than 5 years before the idea of #CrowdHealing entered my mind, Dr. Driscoll all but invented the concept (ShuntWhisperer Theorom #242: If I can think of it, it’s already old news).  Dr. Driscoll ran with it, and is now running a clinic patients who suffer from a related disorder, POTS (Postural Orthostatic Tachycardia Syndrome).  I briefly browsed Dr. Driscoll’s website, PrettyIll.com, was impressed, ran it through my Priority List (Spoon Pile), and filed it.  I just got around to that spoon, reading her publication “The Driscoll Theory” after my appointment with Dr. Liu (aka The Man). 

My jaw still hurts where it hit the ground.  Let me be very clear: if you are suffering from one of the alphabet soups of ICPDDs (PTC/IIH/BPH/NPH/PB&J), The Driscoll Theory is an absolute MUST READ.  Forget if you have been diagnosed with Ehlers-Danlos or not.  Buy a copy for your family, your doctor(s), anyone else you can think of.  The $9.95 goes directly to research:  The Driscoll Theory addresses sound physiologic conditions that can explain the onset of altered intracranial pressure, in my current opinion, independent of any connective tissue disorder such as Ehlers-Danlos.  It goes back to neuroendocrine stress I originally referenced in the ShuntWhisperer post “You’re Fat And That’s Why You Have IIH – Lose Weight and You’ll Get Better“.

I have a “Mind Map” of my disorder; there are outlying symptoms that I had yet to connect to the main map.  I also had one for Trina that was essentially a jumble.  Two other close ICPDD patients as well in varying degrees of connected dots.  Two hours after opening The Driscoll Theory, I’ve pretty well completed those mind maps, and believe I may be seeing the very early stages of altered ICP in another person in my circle for reasons that are clearly outlined in Dr. Driscoll’s work.  In her Theory, Dr. Driscoll she believes (backed up by already accepted medical and physiologic tenets) is responsible for the ICPDDs seen in EDS patients.  (Note: 12/26/2018 – small test doses of acetazolamide yielded positive impacts on symptoms of this patient – more to follow).

I see way more than that.  I see the potential cause of secondary(?) ICPDDs in general.  Like the Missing Link, The Rosetta Stone, the CryptoSkeletonKey of dyregulation of intracranial pressure.  I’m early into this, but I believe Dr. Driscoll has broken the #CrowdHealing barrier of the cause of secondary alterations of ICP alterations. 

As Dr. Driscoll’s work is copyrighted, I want/need to contact her before I start expounding on what I’m seeing outside of her site, but suddenly I’m very hopeful, as well as very concerned.

 It’s a new game now, folks.  Enough of my meanderings and mumblings, there is something to sink our collective teeth into here.

12/26/2018: Note:  Another giant piece of this puzzle is now available: the effects of long-term stress (“Adrenal Fatigue Syndrome”) on the human body, especially the female physiology.  I refer you to: DrLam.com

The ShuntWhisperer

Trina, I finally have answers….I’ll look out for him/them.

9 thoughts on “#CROWDHEALING VALIDATED: IIH, EDS, & POTS: THE DRISCOLL THEORY (AND NOW, ADRENAL FATIGUE: TAKING IT ON THE LAM)

  1. I read your blog like a bible honestly. I was diagnosed with IIH in 2012, 5 years after my first sudden headache that sent me to the ER and brought on the IIH symptoms. I’ve been a pain in my Neurosurgeons ass since then. Demanding info and trying to get someone to listen to me. I am very aware of shifts in my condition and worry that damage is being done by the constant over drainage and brain crushing highs but no one will listen. Thank you for writing about your trials. I’ve taken your blog to my Neuro, 3 times. Helped me to push him to do his damn job cause he refuses to believe I can tell when my shunts are failing or not working properly. Your blog saved most of my sight that would have been completely lost to a stupid doctor. Thank you will never be enough.

    1. Emaly: Thank you for your kind words. I am so glad to hear you were helped by this information. That has been my hope from the start – and more is coming. Everyone is so challenged by the “invisibility” of these disorders; while the traditional research/publish/practice model is important, answers are needed now. I’m certain that current knowledge of human physiology is able to create better models of how these disorders develop, and thereby improve their treatment and management. Making our collective experiences available through the internet for access by patients and doctors is a start. In the meantime, prayers for good days and good outcomes to everyone.

      Wes
      The ShuntWhisperer
      in memory of Trina

  2. Ohhh my this brings me great comfort finding this. I had a brain tumor removed February 2018. I also have a bulge in Cspine. Congenital absence of left trv and sigmoid with severe rt trv narrowing. I bought a home in Crossville Tennessee and I get very sick being there. I’m currently in Nashville trying desperately to return to work as a Ultrasound tech. But all the symptoms you state effect me so greatly. Crossville is 1800 and Cedar Hill 600. I do feel the pressure from my spine better almost immediately coming off of the mountain. So I’m curious I’m staying here until I can try and get a contract job 12 week assignment in Phoenix Az. I read your earlier post before you had rearranged your thread. Anything that can help me is so greatly appreciated. My family needs me I’m the bread winner my husband is working his self to death and we can’t make bills. I just need this job but I need every bit of help to keep my brain to work with me. I know friends think I’m crazy and when pressure systems come into the plateau it literally messes me up so bad. Anyway any help appreciated greatly I want my life back I dream about having my life back and I’m growing tired 😴 of being strong 💪 but I m trying to hold on I just have to keep that face. I’ve been in Nashville area for less then a week with some relief.

    1. Let me take run at what I’m hearing you say:

      Your home in Crossville is at 1800 ft altitude; Your job is in Cedar Hill at 600 ft altitude.

      You get very sick at your Crossville home, and feel better when you go to a lower elevation.

      You do not have a shunt; your venous sinus anatomy is compromised due congenital lack of a left Transverse and Sigmoid Vein, and have marked narrowing of your right Transverse Vein.

      As I recall, you also mentioned Ehlers-Danlos, which is marked in part by loose connective tissues. You also suffer from Postural Orthostatic Tachycardia Syndrome, a common condition accompanying EDS.

      Summary: your venous sinus anatomy is compromised with regard to capacity to absorb CSF; whether you actually have altered CSF net dynamics depends on how much CSF you produce.

      The bulged CSpine is of interest, but lacking further information or imaging, I can’t say if its causing CSF pooling at the base of your skull or not.

      The biggest “tell” is that you improve when moving to a lower altitude. I’ll guess that when you “go back up the mountain”, you have a personally specific period of comfort before you begin feeling badly. For me at 2200 feet, its about 24 hours, but I begin to notice the tugging on my brain and spine within a few hours. Given this presentation, it’s likely that you are experiencing Intracranial HYPOtension – in short, you may have a CSF leak.

      There is needless controversy over whether barometric pressure changes affect ICP. Review of literature leaves little doubt that barometric pressure and ICP are closely linked. Change in pressure on the surface are of the skin affects the pressure of interstitial fluid and blood pressure; it especially affects intra-thoracic pressure & intra-abdominal pressure, both of which have a direct effect on venous drainage from the skull.

      Since you are blessed with EDS, the likelihood is that you have an external communicating hydrocephalus as described by Dr. Diana Driscoll in her “Driscoll Theory”. Your history of recent brain surgery with a resultant cranial defect makes this even more of a likelihood: in short, you’re probably leaking CSF under your scalp where the bone defect is located, or possibly thru your nose/ethmoids.

      ICP is proportional to atmospheric pressure: as the barometer goes, so goes your ICP. At 1800’, you “leak down” and can’t maintain adequate ICP even if you take caffeine pills and drink volumes of water – it’s like a shunt set to too low of a pressure setting. As you go down to 600’, atmospheric pressure increases some 40 or so millibars, about the same swing seen in a severe storm, just faster. My experience with my hyperbaric chamber confirms this in my case. Ironically, if you stayed at 600’, you may still “leak down”, but not as severely because the higher barometric pressure creates a higher static cellular pressure (my term) in your body.

      Advice: go where you feel best. This is drastic, but I’m going thru it now also. I’ve been away from my new mountain home for over a month. I didn’t realize what a beating my neurophysiology was taking until I stayed off the mountain and my very dysregulated neuroendocrine system started re-regulating with the help of carefully selected supplements and rest.

      Dysregulation of the hormone/endocrine system is an inevitable consequence of pathologic intracranial pressure alteration, both hyper- and hypo-tension. Alteration of ICP is an possible result of pathologic endocrine/hormone regulation (I believe, a reason why “IIH” affects women more commonly than men). Its the true definition of a downward spiraling vicious cycle.

      To recover requires breaking the cycle where possible: temporarily relocate to lower elevation (note: Phoenix is at about 1100 feet with a drier, less turbulent climate – if possible, take your long-suffering husband on a long weekend to see how well you tolerate the altitude and climate). Next, get a book called “Adrenal Fatigue Syndrome” by Dr. Michael and Dorine Lam, and see if any of it resonates. You can get supplement counseling thru his website DrLam.com, or reach out to me and I can tell you what I’ve done.

      Wam Hof: interesting that his breathing exercises help you. I have a misunderstanding someplace; it was my belief that meditative deep breathing activated the parasympathetic branch of the autonomic nervous system, which would cause a net increase in CSF production, exactly what you need. However, Wam holds that it activates the sympathetic branch, which should reduce CSF production – the opposite of what you need. Bottom line: if it’s helping, do it. It’s not about me being right or wrong, its about sharing what works.

      Last, you should consult with a CSF Dynamics Clinic about evaluation your cranial defect and possibly leaky dura for repair, as well as looking for other CSF leaks or circulation problems.

      As always, prayers to you, your family, and your physicians. Prayer is more powerful than many (my former self included), give it credit for. This information is given in service to Christ, not for myself.

      From Trina and me,
      Wes
      The ShuntWhisperer

  3. https://youtu.be/YficBlvPwWQ
    I had to share this with you. As Diane Driscoll talks about the Vagas Nerve and then reading and finding about natural stimulation I stumbled on this guy. Wim Huf!!! I told my husband yesterday that my head was about to burst and currently not even able to be home with my family due to elevation. No I don’t if a shunt in my head but I do have a large hole in my head my a resection last year. But regardless extreme sensitivity to elevation, barometric pressure food and pots and just a messed up body. Day 1 of this . Noticeable changes. Learn his breathing techniques then I’ve cold shower. I feel like a different person. Like me!!!! Anyway had to share with you because I am also on the road to beat this thing!!! Here s to the memory of your sweetie!!! Just maybe one more thing that may help. I would have never connected the dots if not for your site and information about Diane Driscoll. But Wim Huf is the man . Please watch his videos.

    1. Trisha: just got to some housekeeping on the website and have read your comments with great interest.

      The big thing that has kept me away has been sorting out the volumes of new information that suddenly “appeared” in my lap. In no particular order, they are Dr. Driscoll’s “The Driscoll Theory”, Dr. Michael Lam and Dorine Lam RD, MS, M.Ph “ Adrenal Fatigue Syndrome”, and a short stack of research papers I’ll name later, but I urge you to get a copy of “The Driscoll Theory” and “Adrenal Fatigue Syndrome” and read them, especially the chapter on Neuroendocrine Dysregulation (in Dr. Lam’s book. Disparate researchers have delved into the aspects of neuroendocrine dysregulation, but not how it can lead to ICP alteration. I’ve been able to fond the Rosetta Stone in the discovery of hormone receptors in the choroid plexus (the tissue lining the ventricles of the brain where CSF is produced) for aldosterone, as well as the effect of sympathetic/parasympathetic tone on CSF. Basically, chronic stress leading to dysregulation of the HPA axis, along with a shock stressor, especially a head/neck injury, can readily be demonstrated to push an already challenged physiology into pathology/“IIH”.

      Both books lay the groundwork for my theory that acquired IIH is not a primary disorder, but rathar a SYMPTOM of neuroendocrine dysregulation, a condition in itself that truly defines “Vicious Cycle”. Treating a symptom without addressing the underlying cause is a failure every time. Shunting/stenting may become necessary if a patient has advanced neuroendocrine dysregulation causing pathologically increased ICP, but they are only a band-aid in and of themselves. This is truly a situation where “Mind” and “Body” interaction is readily evident.

      The good news: I have come to believe reduction in ICP with acetozolamide (ridiculously small doses) and/or High Volume Lumbar Puncture (in cases where ICP threatens the optic nerve, for instance) can allow remission if the patient’s physiology is still adequate to re-adjust. I have personally seen this happen in two cases, one by LP, another by small doses of acetozolamide at the onset of pressure symptoms, and here is where our hope lies, I believe.

      One more aspect for you to consider, and I speak not only from research but personal experience. Large cranial defects are known to make a patient very suceptible to barometric pressure if the scalp is able to be depressed into the subdural space (Monro-Kellie Violation), or actually press on the brain itself. There is no shortage of case reports of this syndrome and improvements when the cranial defect is repaired. Also, a previous dural defect may not have healed completely, allowing the external communicating hydrocephalus (iatrogenic CSF leak) under the scalp. This perversely leads to Intracranial HYPOtension, often with many of the same symptoms of Intracranial HYPERtension. In short, addressing your cranial defect and restoring the integrity of your dural lining is a necessary first step in any permanent recovery.

      Thank you so much for the mention of Mr. Huf, I will be exploring his videos. As always, prayers to you, your husband, and your doctors.

    2. Trisha: I feel like a child building a theory out of “blocks” of other’s research. I watched Wim Huf’s videos on breathing; they are remarkably similar to many other similar deep breathing techniques I’ve encountered, and in fact still practice. I learned them 20 years ago in my Zen Warrior Martial Artist Phase (😏) and they have been a indispensable for me. In the reference I mention, “Adrenal Fatigue Syndrome” by Dr. Michael Lam, et.al., Dr. Lam outlines a similar method he refers to as “Adrenal Breathing”.

      Truth is truth no matter the source, and there is sound physiological principal at work in these exercises. Our society and Western Medicine historically have been conditioned to dismiss this type of Mind/Body practice despite the considerable evidence as to its potential benefits. Thankfully that seems to be starting to change.

      Your breathing/cold shower regimen demonstrates your ability to influence your own physiology without drugs, devices, or other “artificial” (read: profitable) means. The ironic fact is that we likely developed our condition/disorder because of stress and the failure of drugs, magnets, and other pharmaceutical and technological means intended to control that stress.

      Keep at it, sounds like you are on a good path. Again, I recommend Dr. Lam’s book “Adrenal Fatigue Syndrome”, as I am convinced that uncompensated ICP changes and neuroendocrine dysregulation go hand in hand. Prayers for you; thank you on behalf of all ICPDD sufferers for your contribution to #CROWDHEALING.

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