The Dysautonomia Project has published a book and has a website for this hard to diagnose condition. Their goal is to educate patients and general practitioners. Their website is https://thedysautonomiaproject.org/ One of the doctors that helped write the book, Dr. David Goldstein, MD, PhD will send a free copy of a separate book he wrote if you email [email protected] I'm just reading The Dysautonomia Project book, so I haven't emailed, but it was in the notes for the doctor profile. The book is very thorough and has lots of traditional and complementary treatments.
When you say, "One won't find remedies for dysautonomia here. Dysautonomia International is the source for all your questions." I'm not sure what you mean because I thought this was a site that has ongoing conversations and knowledge building and personal experiences. I'm sure (and hoping) people will keep sharing insights and personal experience with this condition.
Dysautonomia International has not provided me with any help with my condition due to their policies on medical advice. I'm hoping one day it will.
In the meantime, members are not free to talk on the social media page about actual cures so I will still be checking Earth Clinic which has already been a help to me in find cures to some of my symptoms over the years.
Butcher's Broom +
Work in progress...
My teenage son was recently diagnosed with dysautonomia. We are at a functional neurology center that, despite my skepticism, is helping. I don't have enough mileage to call any of these a 'cure' but we are experimenting with - butcher's broom (herb) 2x per day, building up calf muscles to better move blood, hydration drinks, and red light therapy behind the knee.
I have found the only thing that works for me is intermittent fasting and also doing an occasional water fast for 3 to 7 day water. Clean diet, daily meditation, detoxing the body via far-infrared sauna/Salt bath and acupuncture has helped me immensely however you have to be very disciplined with all of this. Just try.
Becky, my wife has pure autonomic failure which is a dysautonomia. We have seen many neurology doctors Mayo Clinics Rochester Minn, and Jacksonville Fl., Springfield Il. Clinic, Washington University St Louis Mo., and Vanderbilt University Nashville, Tn. She has passed out 6-8 times in 12 years mostly early with this condition. She also had the heart ablation which helped with heart AFIB. She could not take midodrine because it made her scalp burn.
The best doctor we have found is at Vanderbilt University during a drug trial. My wife was a non-responder to new drug, but Vanderbilt drug trial director and doctor would not let leave until they found a medication she could use. It was great. We continue to see this doctor (Cyndy Chibao) twice a year. My wife is mostly functional with medication. She takes FlorineF and Octreotide in day time to raise her blood pressure and sildenafil at night to lower her blood pressure. We also found out that after meals her blood pressure would drop so Acarbose was added for that and it has helped. We monitor her blood pressure 4 times a day 2 readings at night and 2 a day. Her high nighttime blood pressure has damaged her one eye and her last blood test indicated poor kidney function.
So, it is a balancing act getting enough medication to raise her Blood pressure in daytime and enough at night to ensure safe sleeping blood pressure. Hope this helps.
Dysautonomia is a label, an umbrella for many syndromes. One won't find remedies for dysautonomia here. Dysautonomia international is the source for all your questions. True POTS, a type of dysautonomia, is an elevated heart rate upon standing that won't go back to normal while blood pressure remains normal. Blood pools into your legs when you stand. This is classic pots. Hypovolemia is often present, but it is not accepted by doctors since they don't measure the volume of blood, they say that based on your blood work you have no hypovolemia. Which is not a fact, but an assumption. Measuring blood volume could not be done at every clinic or hospital. Hypovolemia is probably secondary to autonomic dysfunction, but it could lead to a syncope..
If blood pressure drops, it is not POTS. POTS comes with many other debilitating symptoms. Not only teenagers get it. Cervical cancer vaccine causes POTS. Managing pots is very difficult. There is no one size fits all.
I have tried everything there's to try in alternative medicine field, from supplements to modalities, nothing worked for me. I have it for 10 years. Only atenolol allows me to semi function, but it only addresses heart rate elevation, not the other 50 symptoms that come with POTS.
For those that are looking for treatment for dysautonomia!! Have you tried functional neurology? They take a full person approach with an extensive initial exam of 3 hours that looks at EVERY symptom not just one. Here is the link to one of these offices! : https://neurologicwellnessinstitute.com/dysautonomia/
I got allergy tested and went on a low histamine diet with help medically, avoiding high histamine foods and supplements or rotating them in slowly is key to healing the gut. In one day I had less pots in the am, that is when it hits me most, not sure why. Also at night before bed I have Golden milk, use the right milk not raw as it needs to be low histamine, read up on it, with tumeric and local raw honey, then follow it up with a heaping teapsoon of coconut oil. The higher the quality the better you are at healing. ORganic and non-gmo along with cold pressed items. Get to know what is low histamine and keep track of your food on chronometer to be sure you meet your needs. In less than a day I am feeling better. If your supplements are high histamine then only have them 1x a week and maybe double it, then go up to 2x a week, the idea is to heal the gut and rotate foods for good health. Dr Rapp had a good rotational diet, just have to watch those histamines. Prayers and blessings to you. Also find a way to exercise with docs okay, even if laying down or sitting at home as pots is well treated with exercise but it should be supervised and prescribed to prevent episodes. Good luck!
I was diagnosed with this condition over 13 years now which was confirmed by Mayo Clinic after numerous tests. The treatment for this condition from all conventional doctors was for the symptoms and not the root cause. I eventually tried a center for natural and integrative medicine and was immediately diagnosed with Epstein-barr virus along with deficient adrenals through blood tests and a saliva test. Treatment with anti-viral medication and adrenal support medication have significantly reduced my symptoms. I still have a long way to go in my recovery as this treatment needs to be followed for a year or two in order to eliminate this condition. You may want to explore this avenue and see if you can achieve relief from your symptoms.
Butcher's Broom +
I actually have orthostatic hypotension, not POTS (though have been misdiagnosed w/ POTS - my BP drops precipitously, so not POTS). Anyway, I have been wondering if there is an application for red light therapy as one of the tools. Behind the knee is fascinating!! How did you choose that location, and has your son found it useful?
Must be super hard as a mom to see your kid suffering. Sending hugs to both of you.
(I used to use Butcher's Broom and it noticeably helped. For some reason, I can't tolerate it now, but it's really worth trying out, imo.)
I want to make sure that the misinformation posted here is corrected. POTS is not for teenagers only. See article from NIH. "Anyone at any age can develop POTS, but the majority of individuals affected (between 75 and 80 percent) are women between the ages of 15 to 50 years of age. Some women report an increase in episodes of POTS right before their menstrual periods." - NIH
I developed POTS at age 44, I am now 47 and still have it. I also did a pole in a large pots group and was surprised to see a surprising amount of potsies 40-60. It's important that people are aware because I went 2 years not knowing what was wrong with me.
Postural Tachycardia Syndrome Information Page | National ...www.ninds.nih.gov › Disorders › All-Disorders › Postural...
Dysautonomia: Learning about this illness from Lyme disease:
- feet are numb tingle
- neck and head pain
- mornings are hell with palpitations shortness of breath body ache.
- Excessive urination at night, 1.5 liter or more
- - exercise intolerance
- colld and heat Intolerance
- disturbed sleep
- brutal pain. after sittting more than an hour
taking many supplements, eating clean
b vitamins nerve support
After leaky gut from Lyme
Loooking into plasma exchange and hyperbaric oxygen treatments
Desperate for help and feedback and support and ideas on anything
Syd, I am curious of what you are taking to help your orthostatic hypertension, if you don't mind saying? Thank you! Art
Butcher's Broom +
In my previous reply, I meant to say orthostatic hypotension.
I also have dysautonomia. I have had 16 times of going to the hospital in 6 years.I first get vasovagal syncope, followed by excessive heat. I used to then have trouble breathing from AFIB followed by blood pressure dropping very very low, dehydration, low potassium and magnesium, then so many different things happen like ischemic colitis, hypothermia needing a bear blanket to bring myself back from 93 degrees. Last year I had a slight stoke. I eventually got a cardiac ablation and do not have AFIB anymore. But I am now very sensitive to things like midodrine, nitroglycerin, epinephrine, and 5HTP. My heart spasms and I actually died in the ambulance last year. No one wants to spend the time treating this and want to refer me to someone else. I have actually been referred to Mayo Clinic but even they refused me. If anyone has any ideas, I would greatly appreciate it. Thanks
My spouse's BP dropped to 80/40 several times in the last 10 years or so. I keep Fritos on hand. I crush them up and put them in milk. He takes that by spoonfuls and his BP returns to normal in a short amount of time. He had an episode at a rest stop a couple of weeks ago while traveling. A Mountain Dew did the trick. Sodium.
P.O.T.S.Fluctuating blood pressure.... here is a great post from Ted that I found while researching A Fib and related heart issues Dysautonomia
What kind of clean diet do you eat? Also what ratio of fasting do you do? How long did it take you to make it to 3 to 7 day fasting? I would pass out lol! Thanks
I see your post was in 2018. Have you improved since then? Wondering what anti-viral meds or adrenal support you were/are on? We prefer to go the most natural route possible with of course treating the root cause as well. Not sure if you will see this and are still on this site from time to time....but hoping and praying you are better. Thank you
My condition deteriorated over time despite using those meds. Also visited Mayo Clinic Jacksonville Fl where they prescribed Fludrocortisone, which did not provide any relief. Eventually visited Vanderbilt University medical center in Nashville TN. Dr. Biaggioni determined my noradrenaline levels were very low and prescribed droxidopa for low bp during the day and Lorsatan at night to lower high nighttime bp. We are currently tweaking the meds by adding Atomoxetine to bring even more relief of my symptoms. So far, I feel lots of moments of normalcy daily, but, this is a balancing act. I do have moments dizziness early in the morning prior to taking my meds.
Thanks for mentioning Ted's post. It is very interesting, but I am curious. Is sodium nitrate safe? Is Ted saying to ingest it? I know nothing about chemistry but online it says it's poisonous. Has anyone Ted's remedy? if so, where to buy it?