Dysautonomia Education

[Cobramarty]

I am a newbie to this site but not to Dysautonomia. I have a lot of information to share and want to help with any questions.

Do You Have Any Of These Symptoms?

Loss of Balance, Unsteady Walking

Frequent and Vague Aches and Pains

Faintness, Syncope

Fatigue, Malaise

Severe Anxiety Attack, Panic Attacks

Hypotension

Bradycardia, Tachycardia, Palpatations

Poor Exercise Tolerance

GI symptoms i.e. IBS, Bloating, Cramping

Sweating, Skin Color Changes

Dizziness, Lightheadedness

Blurred Vision

Numbness or Tingling

Depression

Frequent Urination

Intolerance to Heat

Sexual Dysfunction -both sexes

Are You Diagnosed With?

Chronic Fatigue Syndrome

Mitral Valve Prolapse

Vasovagal Syncope

Neurocardiogenic Syncope

Panic Attacks/Anxiety Disorder

Inappropriate Sinus Tachycardia (IST)

Irritable Bowel Syndrome (IBS)

Postural Orthostatic Tachycardia Syndrome (POTS)

Fibromyalgia

ADD/ADHD

Diabetes Mellitus

Peripheral Vascular Disease

Coronary Artery Disease

Inflammation/Inflammatory Reactions

Reflex Sympathetic Dystrophy

Alcoholism

Have You Had Any Of These Experiences?

Family History of Stress

Post Viral Illness

Exposure to Chemicals or Toxins

Exposure to Trauma, Especially Head or Chest

Breast Implant Surgery

Stress- Emotional or Physical

Severe Illnesses

Job Stress

Family Problems

Buying or Building a Home

Childbirth

Move Across Country or State

Going off To College

Used OTC Cold or Sinus Medications

Caffeine Use

Deconditioning- Prolonged Bed Rest

You Have DYSAUTONOMIA

Autonomic Nervous System Dysfunction

?An Imbalance In The ANS?

The ANS controls virtually all of the unconscious body functions and systems:

BP, HR, Temperature, Breathing, Sweating, Bowel Function, Sleep Patterns

A balance between the 2 branches of the ANS Is essential for good health!

Your ANS functions to sustain your life by controlling your:

Heart, Lung BP, HR, TEMP, RR Immune System

Fluid Balance Pupil Dilation/Constriction Certain Reflexes

Sweating Digestion System Sexual Function

ANS=SYMPATHETIC and PARASYMPATHIC

SYMPATHETIC

Fight, Flight or Fright Fear, Extreme Physical Activity

Increases HR, BP, RR Generates Energy

Increases Blood flow to fight or flight muscles Stressed, Ill, Injured

Stressful exposure or physical trauma Scar tissue, Anxiety

Stress, Chronic illness, Infection Biomechanical strain

Increases, accelerates body functions Dilates pupils and bronchioles

Inhibits urination and bowel function Immune and Inflammation

PARASYMPATHIC

Rest, Relax, Renew Decreases HR, BP

Get the body ready for rest Sleeping, recovering from illness or injury

Quiet functions i.e. digestion Vagus Nerve

Directs blood to skin and GI tract Restores urination

Stimulates salivary secretions Restores peristaltic function

Constricts pupils and bronchioles Slow down, relax

Put the brakes on body function

You can be Helped.

There is a Reason.

There is Hope.

There is a Cure!

Symptoms of ANS Dysfunction are Physiological Not Psychological !!

All Your Symptoms Are Real

and

Can Make Anyone Feel Crazy

But

Are Not Caused By Craziness !

[Cobramarty]

I also know a lot about the ANSAR test and can answer some questions about it.

[Cobramarty]

In my first day of pharmacology class the professor stood up and said and I will never forget,

"ALL DRUGS/MEDICATIONS ARE POISONS, SOME JUST HAVE BENEFICIAL SIDE EFFECTS".

Having said that, one has to be careful of all drugs/meds especially those taken for a long time. When drugs are take in low dose they have one set of side effects and when take at higher doses they have different SE. When drugs/meds are mixed they have completely have different SE and can amplify SE of each other.

Supplements and Vitamins should also be considered in this group.

[miranda]

I am interested in the no wheat , sugar. Why is this ?

[Cobramarty]

ANS Dysfunction and many diseases today we are finding that there is an inflammatory component to them. Why? If you look at what we eat especially in the last 500 years or so you will see that we are exposed to 'new' foods that evolutionarily we have never been exposed to. And we are reacting to them. I write about this on my blog. Here I copied it:

5 Foods not to Eat!!

Nature is perfect. Evolution is perfect. For millions of years, nature has done it right and always will. Nature will survive. We have evolved to eat certain foods. When man gets involved, this 'perfect nature' is put out of balance. In the last 1000 years and even more recently, man has interfered with our foods and food chain. Why are more and more diseases and illnesses found to have an immunologic component to them. Like heart disease, diabetes, arthritis, bowel diseases, cancers. There are foods today that were not narurally occuring in nature and we are now ingesting them. These foods are not natural for us and our bodies are reacting to them!

After all these years, all the diets, readings, and research I have done, I have found what I believe to be the right answers. There is a little grain of truth in everything that I have read and I had to put it all together.

My Food Plan is very simple. It is:

No Sugar

No Wheat

No Corn

No Milk

No Aspartame

I will go into each of these and tell you why I believe this.

NO SUGAR

The history of sugar is very interesting and quite young. These are a few summary articles on the history of sugar. Please click on them and read them. Article #1, Article #2, Article #3. Just google 'history of sugar' for some fascinating reading.

To summarize about sugar:

510BC 1st used by man in Polynesia and New Guinea where it spread to India

642AD expansion of sugar to other lands

1099 1st recorded in England

1319 Costs 'two shillings a pound' equivalent to $100 per kilo today

1493 Columbus took sugar cane plants to grow in the Caribbean

1690 brought to United States

1750 there are 120 refineries in Britain, "white gold" and taxed it heavily

1874 abolished tax and made it affordable to ordinary citizens

Today costs 41 cents per pound

Average american consumes 43 pounds of sugar per year

NO WHEAT

The history of wheat is also very interesting and quite young. Here are some summary articles on the history of wheat. Please click on them for some interesting reading. Article #1, Article #2. Please also google 'history of wheat' for some additional information.

To summarize about wheat:

11,000 1st grown and eaten in southwest Asia

2000BC wheat as a weed

1602 1st to United States

1611 George Washington 1st to grow wheat instead of tobacco. He wanted to make america the 'Granary' to the world.

1834 New Reaping and Thrashing machines invented decreasing time by 90%. Also a time for Milling machines, fertilizers and railroads

1880 Steam Engine and

1920 Internal Combustion Engine allowed the planting of larger areas and to harvest it in a shorter time

1940 before 1 bushel by manual labor took 4 1/2 hours, now took 16 minutes (95% reduction)

Today wheat supplies 20% of worlds calories, 1 bushel weighs 60 pounds

Today 1% of world has Celiac Disease an immune response to gluten causing an inflammatory reaction in the body

Today average world wheat consumption is 220 pounds per year, United States average wheat consumption is 276 pounds per year

NO CORN

The history of corn is also short and interesting. Click on one of these summary articles on the history of corn. Article #1, Article #2, Article #3.

To summarize about Corn:

It would not exist today if it were not for humans. It is a human invention! It does not exist in the wild.

4000-3000BC Developed in Mexico from a wild grass and called 'teosinte' or 'Maize" which has a smaller and not close together kernel

1000s Mexico maize moves to southwest United States

1493 Columbus discovers america and corn and brings it back to Spain and it spreads throughout Europe and the world

1700s turn corn into sugar and alcohol! and TAXES!

1844 corn refined into corn starch and there is also corn gluten!

1866 production of glucose from corn starch

1882 manufacturing of refined corn sugar

1921 corn syrup developed

Today Corn is the largest crop in the United States in acres and value

Today Corn can grow in as little as 12 inches of water or in 400 inches of rainfall

NO MILK

Milk has a very interesting history. Remember that nature is perfect. Did you know that humans are the only animal in nature to drink milk as adults and humans are the only ones in nature who drink milk from another species. We drink milk to make the milk board and farmers rich. Click on one of these summary articles on the history of milk. Article #1, Article #2, Article #3.

To summarize about milk:

The use of milk as a beverage started withthe domestication of animals

9000BC Goats and sheep were domesticated in Iran

7000BC Cattle were heardes in Turkey an Africa and used to make cheese and its uses spread throughout Europe

1600s cattle brought to United States and milk used mostly on farms

1790 large cities wanted milk

1856 making condensed milk

1863 pasteurization developed

1884 1st bottle milk

1908 Chicago requires pasteurized milk, other cities follow

Today Humans are the exception in the Natural world by consuming milk past infancy. Most humans lose the ability to fully digest milk after childhood. Ever wonder why nature does this?

Today Cow Milk Allergy is an immunologically mediated adverse reaction to milk protein

Today Additional Growth Hormone is give to increase milk production which also stimulates Cancer growth in humans.

NO ASPARTAME

This is very bad!! Aspartame breaks down to Methanol and Formaldehyde above 86 degrees. What temperature is the human body? 98.6. All the side effects and problems are due to these chemicals. There are 92 signs and symptoms that are caused by aspartame.

SO WHAT CAN YOU EAT?

If it WALKS, SWIMS, or FLIES, or if it is COLORFUL--RED, BLUE, ORANGE, or GREEN.

I hope this helps.

[miranda]

Thank you very much for your reply on this.

Strangely enough the past 4 weeks I have been on a diet to loose weight and its called the

Harcombe Diet. Its all about eating nature foods , no processed foods

and I am really enjoying it. However I have alot of inflammation in my body , my spine and ribs and today my right hand hurts and looks swollen. But I am still having milk , so maybe it doesnt help.

Are creams and cheese ok then ?

[Cobramarty]

NATURE IS PERFECT, EVOLUTION IS PERFECT.

Nature knows how to heal itself, and evolution/time has perfected it.

Every time man thinks that they are smarter than nature, we mess it up!

Humans are the only 'animal' that drinks milk in their adult life and

Humans are the only 'animal' that drinks milk from another species.

Cow's Milk proteins are foreign to humans and we react to them. Why do you think that adults are 'Lactose Intolerant". We are not meant to drink/eat milk products.

[Cobramarty]

What do all these illnesses have in common??

Chronic Fatigue Syndrome, Mitral Valve Prolapse, Vasovagal Syncope, Neurocardiogenic Syncope, Panic Attacks/Anxiety Disorder, Inappropriate Sinus Tachycardia (IST), Irritable Bowel Syndrome (IBS), Postural Orthostatic Tachycardia Syndrome (POTS), Fibromyalgia, ADD/ADHD, Diabetes Mellitus, Peripheral Vascular Disease, Coronary Artery Disease, Inflammation/Inflammatory Reactions, Reflex Sympathetic Dystrophy

These are all names for the same disease namely 'DYSAUTONOMIA' an ANS Dysfunction disease. Depending on which symptoms are more predominate, and which specialist you go see, you get a different name for the same disease.

[juliegee]

Welcome CM!

You have oodles of info. Thanks for sharing.

I am very intrigued by your theory that the body is able to heal itself. Our western lifestyles are often so contrary to what it takes to achieve this healing. Slowing down & listening to the innate wisdom of your own body ia very valuable advice. Ever read Andrew Weil, MD?

I agree with your diet, with the exception of excluding wheat. 100% Whole wheat is an important part of my diet. I am not aware of any adverse side effects that I have to wheat. For those who have gluten intolerance problems, I get it. But wheat is grown in nature and a beautiful shade of taupe . Why deny?

Are you a pharmacist or physician? Tell us a little bit about yourself.

Julie

[Cobramarty]

All cells have the innate code to live and survive. It is in our genetic code. The cells will adapt and survive. That is what they know how to do. Many cells are replace with new cells on a regular basis. A red blood cell only live for 90 days. All your cells are constantly being replaced. Your whole body is replaced every 7 years(bones cells take the longest).

Your case is interesting. In your signature you have:

POTS, NMH, mast cell activation disorder, unknown connective tissue disorder, colonic inertia, chronic hives, reactive hypoglycemia

Prior History: chronic sinusitis, migraines, interstitial cystitis, IBS-D, chostochondritis, osteoarthritis

Meds: 300mg ranitidine, 10mg zyrtec, 10mg singulair, 25mg atarax, 50grams Miralax, 50mg doxycycline, and epi-pen as needed

Other helps: Frequent small meals with lots of protein & complex carbs,

You are on 4 anti-inflam. allergic type meds- ranitidine, zyrtec, singular, atarax

All your 'diseases' have one thing in common- INFLAMATION! All diseases have a spectrum from 0 to 100%. In the case of wheat, there is true Celiac with small bowel biopsy positive to gluten intolerance with all the sx of celiac but normal small bowel bx. to GLUTEN SENSITIVITY. Google and look up symptoms of glutten sensitivity.

There is no test for this except a 30 day gluten free trial. Have you ever tried a glutten free diet? I have seen many people with similiar complaints to yours.

You are obviously very active in your health but I would suggest to you to try a 30 day glutten-free diet and I would love to see how you feel. What if you feel much better!

Do you drink diet sodas?

I hope this helps.

[MightyMouse]

Sorry to say that being on a gluten free diet did not heal dysautonomia for me. I've been gluten free for well over a decade. I also eat an extremely well balanced diet, do not use artificial sweeteners, drink sodas diet or otherwise, rarely have corn or dairy products, or processed and/or fast foods. I don't usually drink juices unless I've made them myself.

I have a genetic disorder and no amount of dietary shifts will change that fact. What treatment will work for what individual depends on a number of factors, including etiology of their illness (meaning the cause). While I'm pleased to hear that you have had good results with your own plan, I can tell you that in the years I've been here on the forum, many other members have also tried such changes and while they haven't done any worse for the attempt, they haven't done any better either. If it were that simple, there would be no need for the site to be here b/c we'd have all gotten better by now and gone on enjoying healthy lives.

[Cobramarty]

Your complete history helps matters. I didn't say glutten free would heal dysautonomia.

So what test have you had for your dsyautonomia? Have you had the ANSAR test?

[potsgirl]

What is the ANSAR test, and what is your background?

Thanks,

potsgirl

[juliegee]

Your case is interesting. In your signature you have:

POTS, NMH, mast cell activation disorder, unknown connective tissue disorder, colonic inertia, chronic hives, reactive hypoglycemia

Prior History: chronic sinusitis, migraines, interstitial cystitis, IBS-D, chostochondritis, osteoarthritis

Meds: 300mg ranitidine, 10mg zyrtec, 10mg singulair, 25mg atarax, 50grams Miralax, 50mg doxycycline, and epi-pen as needed

Other helps: Frequent small meals with lots of protein & complex carbs,

You are on 4 anti-inflam. allergic type meds- ranitidine, zyrtec, singular, atarax

All your 'diseases' have one thing in common- INFLAMATION! All diseases have a spectrum from 0 to 100%. In the case of wheat, there is true Celiac with small bowel biopsy positive to gluten intolerance with all the sx of celiac but normal small bowel bx. to GLUTEN SENSITIVITY. Google and look up symptoms of glutten sensitivity.

There is no test for this except a 30 day gluten free trial. Have you ever tried a glutten free diet? I have seen many people with similiar complaints to yours.

You are obviously very active in your health but I would suggest to you to try a 30 day glutten-free diet and I would love to see how you feel. What if you feel much better!

Do you drink diet sodas?

I hope this helps.

Hey CM-

Hee Hee, I knew you'd go there . I do think you are on to something.... Prior to taking all of the H-1's and H-2, etc., I did exhibit more signs of chronic inflammation- pain, etc. Since I've been dairy-free, eat natural foods, no sugar or corn, and NO DIET SODA (puhleeze ) I am lots better. However, all of my tests for inflammation (C-reactive protein, sed rate, etc.) are always quite low- even before my current med/diet regimen.

Are you familiar with MCAD (Mast cell Activation Disorder)? It's relatively unknown. It's when your mast cells are overly reactive. Check out: www.tmsforacure.org. I have MAJOR allergy type symptoms, with NO allergies, low IgE. My dysautonomia stems from this AND an unknown connective tissue disorder. All of this is familial. I have many family members with idiopathic anaphylaxis, etc. and 2 siblings with vascular leaks (aortic perforation & carotid dissection.) My cells, etc. may totally change every 7 years, but the DNA making them remains the same, dang it.

That being said, I am not totally opposed to trying a gluten-free diet. My son was told by his Hopkins docs to go dairy-free & the whole family did it with him. Gluten-free would be a little harder, but I do love my Ezhekial Bread & quinoa pasta, so maybe I could try it....... I just don't medically see evidence that wheat is bad.

And, all of your other suggestions would be an excellent addition to anyone's treatment plan- just don't think there's going to be a total transformation. That's OK. Tiny baby steps of improvement are welcome.

Enough about me- yawn- you still haven't told us anything about yourself???

Thanks for the info!

Julie

[Cobramarty]

There is no magic bullet and no single one cure all. Sometimes a little bit here and a little bit there. There are many things that can cause dysautonomia and a whole other set of things that can cause inflammation.

I find it interesting that you have an 'allergic' disorder with no allergies, low IgE, nl ESR and CRP, 'idiopathic'(which is a fancy word for I'm the doctor and I don't know but I will make up something because I can't test it or prove it). And you have an unknown Collagen Vasc Dz which means I(doctor) can't figure it out and all your tests are negative but I am a specialist and I have to give you a diagnosis of my speciality. This is what I hate about some doctors today. And you the patient suffers.

What you do have is an unexplained inflammatory condition which is setting off low grade inflammatory reaction in my body (your mast cells) and causes many symptoms. What tests did they use to diagnosis your MCAD? What kind of specialist made this diagnosis? Inflammation is under the control of the ANS. So some unknown antigen is causing inflammation and causing the mast cells to release their substances which causes more symptoms which your doctor gives you more meds to combat which cause more side effects which requires more meds and on and on. What was at the beginning of this process? Maybe it is the other way around. What if your Dsyautonomia is causing the MCAD.

As far as glutten free you are right it is very hard. But there is more and more on the grocery shelves and many sites which have glutten free items. That is wonderful that you are allready sugar free, corn free(but watch out for things with corn syrup in them) and diet soda free.

How did they diagnose your dysautonomia?

I hope this helps a bit.

[Noreen]

I find your attitude insensitive and insulting. If you had half the knowledge you proclaim about medical issues you would know that mast cells are responsible for allergic reactions. MCAD or mastocytosis is a disease in which the body's mast cells are on overdrive. My best friend's daughter died at 27 from mast cell.

Reasons for everything are not known. Oh, perhaps you will now explain that you can cure all auto immune diseases and our doctors are really just keeping the information from us.

Please stop assuming we are all imbeciles and you have all the answers.

[delphicdragon]

I'd have to agree with Reen. I would love for my dysautonomia to be "fixed" by a diet change or a lifestyle change, but that isn't going to happen. All my disorders are explainable by my Ehlers-Danlos Syndrome. This is a collagen disorder - my collagen doesn't hold my joints or veins or heart or intestines OR CELLS together like it should. Therefore my blood pools in my legs when I stand up and I go into hypovolemic shock. No amount of diet/ exercise is going to change that - the veins are broken. I can rebuild collagen just fine, except the mechanism which tells it where to go and how to line up isn't there.

Nature and evolution are in no way near perfect. I'm saying this as a biologist. Evolution ultimately sorts out SOME of the genetic disorders. Genetic disorders that don't affect fertility stay around because there is no mechanism to sort them out. In the old days - before civilization, I would have been sorted from the population b/c I would not be as likely to survive. This is no longer the case. My genetic disorder has a 50-50 shot of being given to my kids. My dad gave it to me. He wasn't diagnosed until I was.

We need more research. The body has not been mapped out. We're still trying to figure a lot of it out. As I said before, I'm a biologist - a researcher. We are only scratching the surface of what we know. The answers are out there, but I doubt they are as simple as avoid wheat, dairy and aspartame. If it was that simple, I'd be cured.

Sara

[Cobramarty]

No insult intended. No insensitivity meant. Sorry if you felt offended. I'm not name calling anyone.

My point was ,what set off the mast cells? Why are the mast cells on overdrive? I am sorry to hear about your fiends daughter.

I never proclaimed to be able to cure all autoimmune dzs. But I hate it when other physicians tell patients that they have an autoimmune, collogen vasc dz, rheumatoid dz, etc and all of the test are negative. Your doctors are not keeping info from you, it is they just don't know or understand.

I don't have all the answers and encourage everyone to ask questions, ask why. I just have some info to share. Everyday I am allways learning. Differences are different points of view.

[juliegee]

Hey CM-

I don't find your attitude insensitive and insulting, but I AM uncomfortable answering your questions- when you don't answer mine. You pose as someone with answers, but give no credentials.

For the record, my DX comes from Dr. Marianna Castells, a masto specialist, at Brigham & Women's Hospital/Harvard medical School. You have superior knowledge?

CM, I like how you think outside of the box, I also agree with a lot of your recommendations. Your signature tells me that your answers haven't solved your OWN health problems- much of which appears to be resolvable with better choices.

At DINET, we are all here learning from each other. WHY you are here?

Julie

[Cobramarty]

Nowhere did I say avoiding wheat, sugar, corn, milk, or aspertatme would cure/tx dysautonomia. You are absolutely right that we have only scratched the surface of knowledge.

[Cobramarty]

So how can we learn from each other if we are not here on this forum. I didn't question your mast dx and only tried to ask and understand how everyone is being dx with dysaotonomia. I ask, What is the dx. tool usedfor dysautonomia?

Why am I here? To share and learn about dysautonomia. This is DINET. am I on the wrong site?

I have not allways lived what I think today but as I learn and change . I try to use what I have learned everyday.

[sue1234]

I agree, to some extent, with CM about the foods we eat. We are farmers ourselves, working away from conventional farming. It takes a boat load of pesticides and herbicides for conventional farmers to grow their crops. AND, the seed used to plant these crops is becoming increasingly genetically modified, which could create something that the body doesn't even recognize anymore. Consuming those kinds of foods could send a body's immune system in overdrive.

I am really thinking of going gluten-free, although my biopsy was negative. I have read way too many stories of people who are NOT celiac going gluten-free and realizing how wonderful they feel after a short time. I guess these people were gluten intolerant to some extent.

[Noreen]

Sue-

Remember that oftentimes when people are going gluten-free, they are getting away from a lot of processed foods in the process. It is wonderful that good dietary practices are being adopted but sometimes it is the overall life-style and not just the gluten-free. that said, everyone should investigate for themselves and a 30 day gluten free diet is not a bad idea.

It is however hard to stick to - I do a lot of gluten free but still make my own bread from whole wheat, make my own yogurt from no hormone milk, buy local produce, chicken and meat. None of us can do everything and we do what we can to try to optimize our lives. Hopefully we learn from each other and support each other along the way.

[miranda]

since I have been on a natural diet , ( avoiding wheat also )

my stomach has stopped bloating so I will be staying on this diet.

But I still have inflammation , most of the time . I have scoliosis and fused ribs so think thats the cause.

[Cobramarty]

I agree with you Sue1234. I believe the food we eat today is very different than what we ate just 50 years ago. Take the apple for instance. It has been genetically engineered, hybrid breed, selected out to grow faster, grow bigger, stay ripe longer, be more colorful, insect resistant, etc. The apple of past was small, dense, different tasting and more nutritionally sound. Yes these are 'natural' grown in nature but not the way nature intended.

Sorry to get off track a little with the foods. Someone earlier asked and I was just answering.

Back to Dysautonomia.

How were you diagnosed? How is your doctor treating you? How is your doctor following your treatment? With their treatment are you being cured?

I am very disappointed with current western medicine. We are pretty good at acute illnesses(trauma, stroke, heart centers, etc.) but stink at chronic illnesses. We are a pharmaceutical/drug pushing medical society. You have a complaint, you get a drug. Health care is pharmaceutically driven. This is how doctors are taught. OK not all but certainly most. They develop a drug and then find a disease to use it on.

Thank you everyone for contributing to this thread. Your input is valuable and mentally stimulating.

Dysautonomia is an old disease but today it is more understood by more. Current thinking and treatment is 10 years ahead of its time.