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