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Dear Dr. Diana, I live in New Zealand and have only ever had diagnoses of chronic fatigue and IBS for ongoing unexplained symptoms. I am 43 years old. Since my childhood or teens I have experienced on and off: chronic fatigue, weakness, fibromyalgia, gastroparesis, IBS-C, multiple food and chemical sensitivities, light-headedness, insomnia, eczema, disabling period pain, low blood pressure & orthostatic hypotension, occasional fainting, dizziness, headaches, neck pain, sensitivity to light & sound, anxiety, depression, am easily startled, confusion, brain fog, memory loss, difficulty concentrating, difficulty using stairs due to visual distortions, irritability, hirsuteness, an aching jaw, cold hands and feet, periods of waking up in the middle of the night gasping for breath, occasionally hallucinating that I see smoke or people standing in my peripheral vision who aren’t there. At age 5 I developed PTSD following (undisclosed) sexual abuse & trauma at school. At 10 years old I had my tonsils and adenoids removed. In my 20s I developed gall stones and had my gallbladder removed due to frequent attacks despite significant dietary adjustments. I was vegetarian for 24 years, but after starting to eat meat, bone broths & fermented foods three years ago, developed symptoms of histamine intolerance with chronic burning diarrhea with incontinence, constant headaches and body pain, chronic confusion & memory loss and anxiety. After removing high histamine foods from my diet those symptoms abated somewhat and the diarrhea has mostly stopped and I’m constipated. My stomach continues to hurt terribly when I eat solid food and even sometimes after just drinking water, so I’m only eating soups and smoothies. I have started getting pains in my fingers and hands and sore cold feet and calf muscles.
Do you have any idea what my symptoms may be related to? Could you please suggest some tests that I might ask for? My tryptase came back as normal and my doctors have never gone beyond a diagnosis of CFS & IBS. I have had a recent colonoscopy that showed nothing unusual. My doctor referred me for a follow-up with a gastroenterologist, but was refused on the public health system as my condition is not urgent.
I have an incredibly strong pulse in my gut. Can you tell me what this may be related to?
My mother has been struggling with chronic symptoms also without a diagnosis beyond CFS.
We got so excited after hearing your interview with Yasmina and tried to order ParaSym through vagusnervesupport.com but although the site says:
“After payment you will receive an email from Amazon Fulfillment saying they can’t ship to your country. Don’t worry, you will still receive your order…”
I couldn’t get past the shipping page in order to attempt payment. I got the message, ” Sorry, this item can’t be shipped to your selected address. Learn more. You may either change the shipping address or delete the item from your order. ” After that the continue button was disabled. I have tried multiple times. I really want to buy the ParaSym so please advise! TJ Nutrition gives no telephone or email address and their social media buttons aren’t connected to any accounts.
Thank you so much for your help.
So many of your symptoms DO sound like they could be from low acetylcholine/poor vagus nerve function (and you may receive some dramatic help from Parasym Plus). For now, if you email orders@TJNutrition.com, they will take care of you directly. Please let us know how it goes! Meanwhile, have you read “The Driscoll Theory” about the role of high intracranial pressure, vascular anomalies and the vagus nerve? It may help put more of the pieces together for you and your family. Big hug,
Thank you very much for your kind reply. I emailed the contact you gave me and hope to be trialing your supplement soon. I do plan to buy the book, but this week am buying the Parasym Plus, so will have to wait a bit.
In the meantime, are you able to shed any light on the extraordinarily strong pulse in my abdomen? It’s not just after eating. It’s often strong first thing in the morning. It runs in a line down the center of my belly from just below my stomach up to and including my belly button, and when pressed it makes the hand of the person pressing it jump it’s so strong. Could this be inflammation or a blockage of the Vagus nerve? A friend of mine who was a massage therapist & now works as a midwife says she has never seen anything like it and she’s touched a lot of tummies.
Thank you again & I can’t wait to get your book. I want to give it to my doctor when I’ve finished reading it!
I have the same thing! My cardiologist imaged it to be sure it wasn’t a large aneurysm (or abnormal vessel), but it came out fine. Mine IS worse if I have tachycardia, which makes sense (more volume of blood is going through the vessel). If you are concerned, they can do an echo to check it.
Thanks again Dr. Diana. I can’t get started on the Parasym Plus, as I can’t afford it until I start working again or come across some other source of funding. I wasn’t aware what our currency had done in relation to the $US over the last year until I went to pay for it! One bottle plus postage is now over half my weekly welfare payment.
The Pancreatic enzymes are within my reach and I’m wondering what’s in them? I have multiple intolerances and have read that certain strains of probiotics worsen histamine intolerance. I’ve tried to find info on the VNS site but can’t find a list of ingredients. I just want to make sure before I invest.
I also wanted to ask whether SAMe can help with Vagus Nerve function and/or low acetylcholine levels. I’ve just found a new doctor who agrees that my digstive issues and chronic fatigue are linked to autonomic nerve dysfuction and she has suggested I take SAMe. I’ve been titrating the dose up for the last 3 weeks and just took 400mg this morning for the first time. It has stopped my headaches and my body hurts a lot less too. I’m still exhausted however, and my digestion is no better. She suggested Pancreatic enzymes instead of the HCL & Pepsin I’d been taking, so I’m very interested in the VNS ones. Your guidance would be most appreciated. Thank you.
The ingredient panel is on Amazon — you can find it here: http://prettyill.com/store/view/digestive_enzymes (cut and paste). If you go to the Amazon link, it is there. There are no probiotics in the enzymes — only digestive enzymes. When making this formulation, we tried to take our sensitivities into account. SAMe does not increase acetylcholine or stimulate the vagus nerve. I hope this helps! 🙂
I have the same thing! My cardiologist imaged it to be sure it wasn’t a large aneurysm (or abnormal vessel), but it came out fine. Mine IS worse if I have tachycardia, which makes sense (more volume of blood is going through the vessel). If you are concerned, they can do an echo to check it.
I have this, too! Doctors have always commented on it and when my gastroparesis was bad, they chalked it up to being very thin. I’ve since gained nearly 40 pounds and it’s still present.
I’ve had an echocardiogram, which was normal, and also a test to rule out intestinal ischemia.
Dr. Diana — any thoughts as to whether this is just a coincidence or somehow related to EDS/GP/POTS stuff?
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