Surprisingly, I find I sleep best with my legs higher than my head. Thanks. I have only been bedridden for months at a time, and it was just horrible each time. If theres x amount more symptoms its eds. Dr Perrin explains the back-flow issue in really simply terms making it easy for the layman to understand. I remember her horrific case now. Having skills retrained makes them (much) more energy efficient too so it has part in a slow process of increasing the energy envelope too. They should be checked immediately to avoid years of disability because treatment exists for many of these problems. My grand hypothesis is that whatever caused their CCI/AAI is at work in other ME/CFS patients but is manifesting differently.Hopefully we will know at some point. * I should note I am not sure Ramsey himself described ME as an atypical poliomyelitis (believe Dowsett did and Hyde definitely did), perhaps someone if reading this can confirm, but he did call it was an illness triggered by a virus. (Brain surgery would probably be worse.) It has helped a lot with my pain and function, though not a cure. He made a conscious effort to use his journalism background and reputation to arrange appointments with key Government decision makers. Not one doctor of have seen has reported anything. I hope not. One day, she spiked a 104-degree fever and, after 10 days of dizziness, sweats, chills, and soreness, she "stopped being able to speak or think," she says. And I do appreciate any new information about anyone recovering or improving a lot and how they got to this point. document.getElementById( "ak_js_1" ).setAttribute( "value", ( new Date() ).getTime() ); Subscribe To Health Risings Free Chronic Fatigue Syndrome and Fibromyalgia Information, HEALTH RISING IS NOT A 501 (c) 3 NON-PROFIT. I had a very long onset, starting with loss of very high functioning memory (both muscle memory and factual memory) approx 18 years ago, with PEM and more severe cognitive issues showing up 4 years ago. That said, this news has spurred me in a new direction in the chase for the cause of my ME/CFS. And I am talking about my daughter who improved from CCI surgery but it did not cure her. Finding an unusual treatment that works is fairly typical in people who recover. Congratulations and thank you for your work !!!! It also may demonstrate how each individual change in the body can affect the entire body, just like an individual change in an ecosystem changes the entire ecosystem. Both were classic ME patients with all that implies (post-exertional malaise (PEM), viral infections, MCAS, POTS, sensory sensitivities). My days are now filled with thoughts about life, not illness and symptoms. 2) Why is there such a prevalence of women in the ME patient population? I am happy that Ms. Brea health is vastly improved and perhaps even cured of her malady, but she never did have our thing. Later, the warriors son was thrown from one of the ponies and broke his leg. Certainly her CCI/AAI diagnosis is now the correct one but its interesting that neither her nor Jeff fit a typical CCI/AAI diagnosis either. Reason being that NEITHER Jeff nor I had overt neck symptoms before our surgeries. The fact that 20 people on the Phoenix Rising Forums have been diagnosed with craniocervical instability/atlantoaxial instability (CCI/AAI) over the past 8 months or so is remarkable, and suggests that the condition may not be as uncommon as one might think. Speaking of that I emailed Avindra Nath Jeffs story and today your story and asked him if he was looking at this in the NIH Intramural study and I gathered from his answer that he is. She has been diagnosed with hEDS. Thats how genuine he is. I take one pill in the morning and one in the early evening. Jennifer Michelle Bra and Omar Tomas Wasow are to be married Sunday outside the Aquinnah Lighthouse in Aquinnah, Mass., on Martha's Vineyard. She's even a certified medical acupuncturist! It is time we become just as militant with those inside our community who refuse to accept the validity of recovery. Would you share the Hyperzine product thats working for you? my head goes clean through the rear window of the truck and im knocked out. The SYNDROME of HATS (or MCAS) is (1) MCAD (2) EDS type 3 (3) POTS or OI. 'Charismatic, smart and determined': Jennifer Brea with her partner, Omar Wasow. If she had craniocervical instability (or any other variation of Ehlers-Danlos Syndrome) and that explained most all of her symptoms it was not MECFS and never was. As long as we dont know what causes and sustains our disease we cant say she never had our disease. One person diagnosed with CCI reported on the Phoenix Rising forumsthatmanual traction (having someone pull on ones head while lying down) can help, and prescription drugs have resulted in major improvements. Learning about Jens recovery yesterday and how she recovered, blew my socks off and I dont think Im alone in that based on all the responses. But mostly they make me want to keep on keeping onkeep organizing my efforts as best I canand, to have faith in what I feel internally and observe about myself, even if those things cannot easily be seen, diagnosed, described, or defined. A procedure called AltasPROfilax, specialized chiropractic care and the Perrin technique is another possibility for those with neck issues. I have not come across a doctor in that time that either understands or knows about CFS so there has not been a diagnosis; usually just shrugged shoulders. I am increasingly finding it just as frustratingeven maddeningwhen people inside our community refuse to accept that people DO recover from ME/CFS. Jeff will interview Mattie again in a couple of months. It started when I learned that bigger of these movements could help turn down a very rapid hart beat in the late night to a normal one. Already those who were caught up in the publicity of this high profile case are starting to twist their explanations of what happened. Shes lifting light weights for 30-90 minutes and getting stronger, not weaker. I asked him to write a case study documenting my before and after (dramatically declined) cardiopulmonary test results. Not even Mestinon, an old and safe drug which Jen, by the way, found that helped her. Thank you so much for this article, and care you have taken. Not sure how available nutritional supplements are in NZ, but Huperzine A is well known in Chinese and Indian medicine. (Unpublished data.) That wouldnt offer a single golden ticket to recovery for us all by having a single medical discovery. I sleep much more better, not perfect, but fine most of the nights. If so, how.Thank you. Thanks. To think that something like an environmental toxin can (amongst other things) invoke an immune responsethat can (amongst other things) affect the strength of connective tissuethat causes (amongst other things) hyper-mobility in key spinal jointscompression of the brainstemand POTSwhich, in itself, leads to so many other far-reaching symptomsand internal compensatory mechanisms (which cause symptoms of their own, and have many other systemic implications). Its possible that an enteroviral infection could be causing the ligament laxity issues in CCI. Oct. 27, 2020, 8:22 p.m. On Thursday, Oct. 15, Stanford's Medicine and the Muse hosted a discussion with Jennifer Brea, an academic turned myalgic encephalomyelitis (ME) activist and. I immediately had changed in functioning and energy. We will work together . Is a powerful reminder not to give up and to push for help. As ME patients have very often more tense muscles and a more rigid posture, they should see a lesser effect of this spinal tail puling. Conversations, once vanquished, about the unfairness of it a tunnel down which no cheese exists show up again. Her office accepts new patients. low testosterone (possible sign of infection?) Thanks for the informative article, Cort! Good luck on your ongoing search. Jen Brea. Using the old trained skill wont help you much and just confuses you. They did several surgeries trying to fix it and get her out of pain. Joint hypermobility with its possible complications is now classified using the idea of a spectrum. The neck issues or lack of them, at least at times, in this spinal issue are so interesting. I benefit enormously from neck traction-like interventions like the neck hammock. Many people do not fully meet the new diagnostic criteria for hEDS but their hypermobility still causes problems for them. Raquel (form Brazil), http://dysautonomia.com.au/fibromyalgia-syndrome/. Given the extreme disability sometimes found in ME/CFS, its possible that two of the crucial brain organs involved in movement the motor cortex and the brainstem may have both taken a hit. While getting a diagnosis isnt a piece of cake, it can and is being done. We could not avoid the unsafe people during this process that took us at least 3 years and only one surgery accomplished. I hope thats so! A chronic illness or disability can affect an adolescent in many ways: Complicating their development of independence Interfering with their connection to peers Introducing a new set of emotional conflicts during . Amy, if you have the possibility in your area, look into Alexander Technique. Jeff just interviewed Mattie three months post surgery. kryptopyroluria That kinda bites. Cort, I dont think Jennifer was ever an EDS patient. So I learned to go back to the basics each time that happened. The same happens for example when the blood flow to the brain is impaired by inflammation blocking good brain liquid drainage. Three months post-surgery hes nowhere near healthy, but hes no longer mostly bedridden, POTS, dysautonomia, headaches and neck pain have disappeared, and he has more energy. June 1st will mark one year since my full recovery. Hopefully we will get much more brainstem research. Enteroviruses (the first viruses associated with ME) produce enzymes calledmatrix metalloproteinases (MMPs) that destroy connective tissue proteins like collagen, elastin and gelatin. The other big distinguishment between the two paradigms is in Western medicine people identify with their disease. They are their disease. I like bringing these two worlds together because as a medical doctor I have the tools to hunt down every possible thing that could be contributing to fatigue. Jennifer Brea was a PhD student at Harvard when, one night, she found she couldn't write her own name. That was probably due to improving the flow of pooled blood in the legs to the hart. It makes me wonder if their CCI/AAI is the result of the same infectious, autoimmune or inflammatory process that undergirds ME/CFS its just showing up in this particular manner. Many of the symptoms I experience seem to point to something the body is trying to resolve. Even though I have a super sensitive digestive system, and always have, Ive had no adverse affects. Jen and Jeffs stories place a new emphasis on the brainstem in ME/CFS. Like the PACE Trial; garbage in, garbage out. Hibernation itself is a damaging process if the patient isnt doing a winter sleep like a squirrel. My daughters illness started with swollen lymph nodes, mouth and nose ulcers, extreme fatigue, low grade fevers, muscle and joint pain, exercise intolerance, POTS. from being able to remember and repeat physical movements after one or two demonstrations and having no trouble recalling them days or weeks later, to flat out forgetting them entirely within a few minutes. If we could find a way to create bone loss, would it take the pressure off our spines ..then we wouldnt need surgery. Thanks Cort, for reporting on this and other stories of recovery. If all it took to cure it was a spinal surgery, wed all be jumping up and down with joy. Im very happy for Jen and anyone who manages recovery or remission, Im a tiny bit scared of losing her as one of our primary advocates. Its a definitely recovery if Jen can get away with 30-90 min of weight exercise, light or otherwise. She has an AB from Princeton University and was a PhD student at Harvard until sudden illness left her bedridden. Doctors are still in the mode of one-cause-one-disease. To Note that physical discomfort in head/neck area is not required! Its great that this worked for her, BUT the very fact ME/CFS has had clustered outbreaks in many places makes it evident that this is some kind of infection. Jennifers story provides a clearer picture (and a good example) of how one small thing, like an environmental exposure can, in susceptible people, cause a cascade effect that quickly causes dysfunction, and disability, in the body on so many levels at once. Ken Anbender recovered from 26 years of hell using the Pridgen Protocol. Three months post-surgery hes nowhere near healthy but he is no longer mostly bedridden, his POTS, dysautonomia, headaches and neck pain have disappeared and he has more energy. This is why Im curious if Jens MCAS or mast cell activation came on as a result of environmental trigger (mold) or has a genetic origin. To add to the problem, we dont always know what information is relevant and what is not. At an attempt to throw it all at the wall and see what sticks. Lets go back to Naviauxs research and Ron Davis comments on it. the original CFS. The only things we really know about recovery is that: a) its not common; and b) it occurs in a variety of ways. We hear stories about how there have been no reports of adverse effects of x, y, or z but then you look and there are lots of anecdotal reports. We may have weird neurological symptoms that do not squarely fit onto any list, and a growing number of us (not without some controversy!) There are 21 other people named Liz Delany on AllPeople. I believe now that the arthritis in my neck is stopping or slowing down the flow of toxins that get drained from the head..i have constant sinus infections etc. Orthopedic Surgery Female Age 44. Saying that a viral onset causes this disease it too short of an explanation. The result of toxin build-up manifests as CFS/ME symptoms. Medicine, as Jen Brea noted in her recent blog, is ever-evolving. She couldnt even get the facts right here. That being said it is my hope that you can put your forces behind the search for a biological marker. I am also copper zinc imbalanced. So this makes me wonder if Jeff or Jen showed signs of MCD from the beginning. Sorry Dejeurgen, reading your reply again my question isnt relevant to your theory, so please ignore. by Cort Johnson | May 21, 2019 | Brainstem, Craniocervical Instability, Craniocervical Instability, Homepage, Spine | 150 comments, I can hardly believe it myself. This renews my confidence in the invisible train that Ive been tracing in my own apparent cascade: Infectionsystemic inflammation and autoimmunity (and likely MCAD)(joint laxity appears to fit in here somewhere/somehow for me too)POTS/Dysautonomiafull body shut down and collapsesympathetic overdrivegastroparesischronic SIBO/dysbiosisleaky gutincreased inflammation and autoimmunity(and around and around again). I have videos, and written testimonials, and Glen Miller aged in his Sixties can be interviewed in, Melbourne, Victoria, Australia. That sounds like a lot and it is neither craniocervical instability (CCI) and tethered cord syndrome are easy to diagnose and are even more difficult to get treated but her rapid recovery after 8 years of moderate to severe illness is amazing. But it works in the body differently at low doses (aka to calm microglia and reduce brain inflammation rather than suppress coughing). Plotter of revolution @MEActNet. Compare it to be used to ride a car and all of a sudden having that car replaced by a truck for mining operations. Most of us with MCAS dont have HAT, so your daughters case is unique. All possibilities to heal should be pursued. My suspicion is that its such a small dose (at 10mg twice per day am and pm) that any sleepiness is negligible. But the short shot effect felt to be beyond just having more oxygen in the blood as the effect lasted a few seconds only each time. According to one neurosurgeon, my 2012 MRI (the self-same that my neurologist used to diagnose me with conversion disorder/hysteria) shows very clear signs of intracranial hypertension, most notably a pituitary gland that has been flattened into a pancake. NARROWING OF VENTRAL CSF SPACE FROM DISK BULGES; no significant overall spinal canal narrowing secondary to sufficient dorsal CSF space. Ive been taking it for over a year and it has been a miracle, not a cure, but I couldnt live without it since it keeps many of my symptoms, especially the cognitive dysfunction (e.g., short term memory problems and brain fog, etc.) The symptoms matched. I also agree that spinal fusion, especially such a highly specialized procedure as craniocervical fusion, would not be my first pick for treatment. This is one of the problems with ME/CFS is that it is a truly a diagnosis of exclusion. My name is Jennifer Brea. Ehlers Danlos has that plus a bunch of other issuesGI issues, stretchy skin, thin skin, easy bruising, abnormal scarring, prolapse, blue sclera, etc, plus all the comorbidities (POTS, MCAS, migraines, etc). amzn_assoc_placement = ""; 1) ME causes all cells in the body to work differently compared to before and that includes brain cells. I use the same process for mental skills. I doubt so. 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