Pure Autonomic Failure is a rare disorder involving the malfunction of the autonomic nervous system.
I have autonomic nervous system failure and also autoimmune thyroid. The struggle for energy and brain fog, plus panic of condition worsening is so real and I relate to the struggle for energy. My energy was mostly 0-1. My heart and blood pressure are affected. I also have periods of passing out daily, which my heart loop recorder says my bpm is in the 30's during these episodes and when I sleep. My blood pressure issue seems to be mostly diastolic and bpm issues (diastolic heart failure and widening pulse pressure and Bradycardia).
The last three weeks a friend gave me something to try (doctor gave me a terminal diagnosis) and I can tell you that for the last three weeks, the brain fog started lifting the first day and every day I feel like I am getting my brain back. This is my third week (I am taking a bottle per week) and I had enough energy to co-drive a 9 hour drive 3 day trip (for medical testing) and actually had enough energy to be present and drive most the way.
I spoke to another person who had severe medical issues and liver failure - he said to take it for 3 months to really get my body rid of metals and other toxins, before I lower my dose to a maintenance level of a few drops per day. Its called Daily Detox and it is changing my life. For the first time I have hope. I am not cured, but I have hope and I feel like I am getting better. I want the same for you. ( heal.navanglobal.com )- if you sign up as a member you get more product and its more affordable, but just try it. Under your tongue at least 4 times a day with a dropper full (about half the dropper in amount) It tastes like water.
The Daily Detox won't conflict with meds, it is absolutely safe, organic, pure, etc. Zeolite. It is powerful stuff. There are certificates of authenticity with all the scientific trial findings for each product - look above the product for the "COA" info. Its made by a Bio Chemist.
Research and see if its right for you. They have a 30 day money back guarantee. They also have another product Restore that has minerals we need, but the Detox is what is currently helping my symptoms.
My health is to the point that my digestive doesn't work except with the help of tea. My heart is shutting down. Skin conditions, smell, oily skin indicate my liver was becoming an issue too.
I haven't been able to find a neurologist to help me yet. My records were sent to a neurologist who refused to see me as he didn't specialize in Dysautonomia. I will find out this week whether U of W will accept me for testing or no.
My grandmother was diagnosed with Parkinsons in the 90's, but now we wonder if she had my condition because her condition was unique in its progression.
My heart goes out to everyone with Autonomic issues.
I hope and pray this can help you too. Please stay in touch. Its so rare for someone to have our specific condition - even the Facebook support groups for Dysautonomia focus more on POTS than Autonomic Nervous System Failure.
Wishing you HEALTH.
My name is Ruth and I've read your post here in RareShare regarding your health issues. I can feel that you really want to find out the reason behind this. I am suggesting to try and check CrowdMed company via (https://www.crowdmed.com/how-it-works). They got pool of medical specialists who can help you.I'll appreciate also if you can share the company website to your family and friends who are experiencing tough health conditions. There's always an answer to unsolved health mystery cases with CrowdMed. Hope to hear from you! Ruth
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
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Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
Living with Autonomic Nervous System Failure/Dysautonomia and Autoimmune thyroid. (Dystolic heart failure with widening pulse pressure and worsening Bradycardia + arrythmias and...
Having read what I wrote here while confined to my hospital room on day three of my current stint for very low hematocrit values (<2.5) (July 2021)
I realize how atrocious what I had...
I am an senior electrical engineering...
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