Dysautonomia Mania

Dysautonomia and Awareness

2017-12-12T14:32:00.001-05:00

I have not written on this blog for a very long time now. Reasons are because of so much awareness is out. Many people are finally taking Dysautonomia seriously, and is on the rise. I have seen many blogs, articles, charities, communities,videos, and the list just grows. Also, doctors are more aware of this Dysautonomia, and more and more doctors are taking this seriously.

Dysautonomia is an Autonomic Nervous System Imbalance, or Dysfunction. A good example in short is like, being a quart low on fluids. I received my knowledge through a doctor who has it, and her mother had it, badly. She diagnosed my son with it. I too have this Dysautonomia. The apple does not fall far from the tree.

Many variety of people have this Dysautonomia that affects us all differently, yet same. I meaning same, do to the dysfunction of your Autonomic Nervous System. Many are known to have the condition which is called "POTS" in short. The full name is called: Postural Orthostatic Tachycardia Syndrome. Most doctors diagnose their patients with POTS.

Living with this Dysautonomia has a wide variety of symptoms, and can be debilitating. For Example: Some people are using wheelchairs and others can function with it. Many faint from it, and others have that feeling of faint that lingers. You can have a racing heart, or a slow heart rate. Your symptoms can come and go at any given time of the day. There are no warnings. It just hits you, and you have to deal with it the best way you can which, can be very frightening. It has a tendency of turning your flight -fight on and off allot, which causes much anxiety, and depression. After all, the Autonomic Nervous System which is part of the Central Nervous System, plays a massive role in our bodies.

Medications are given to many when the symptoms arise. Of course many of us have sensitivity to these medications, which can work very well for a normal person, with a well functioning Autonomic Nervous System. For us, it is trial and error. Its frustrating for the doctors and the patients who deal with this disorder. Lowering dosages can help, or taking alternative medications can help. Many go holistic wise, or a little of both. After all, we are all different and none of us are quiet the same. Could explain why we can't actually just find one cure for all. We might be in the same boat, yet our bodies are doing something different from others, who suffer with this Dysautonomia. Its a very complex illness to have.

I'm glad to see that people are aware, and taking this seriously. It's nice to see others stand up for each other, and help out the best way they can. My advise is to do the best for you, and keep strong and never give up. You will be able to find ways to help yourself in the long run. You know your body better than anyone else, and you have to live with it. Eventually, you will have methods to help you feel better in one way or another. Also, always good to speak to others who have it, and understand you. Till next time, peace and hugs. Godspeed, The writer of Dysautonomia Mania, Miss Vivian C. Roberson

Spring and Fall...worse season with Dysautonomia

2014-05-31T20:42:00.001-04:00

Hello Everyone. I would like to share some more information on onsets with Dysautonomia around the Spring and the Fall seasons.

But first, I would like to give a little refresher to those who are reading my blog for the first time and do not know about Dysautonomia. Dysautonomia is an Autonomic Nervous System Imbalance. We are like a quart low on fluids within our ANS System which, is our main system in our bodies that keeps us going. It regulates your whole systematic system. Also with this Dysautonomia comes other issues and secondary health issues, that can make it worse. Dysautonomia is not fatal. Only the diseases that come with it can or, may be fatal in some people which are usually, the secondary illnesses. Dysautonomia itself is not dangerous or, fatal. Dysautonomia is very uncomfortable and mimics allot of different illnesses that people are diagnosed with. Also, with Dysautonomia comes a wide variety of symptoms. Read into my blog about Dysautonomia.

Welcome to Spring! Not always for those who have Dysautonomia. Spring is blooming and recreating its earth with beautiful greenery. The rebirth of many of earths nature. But, not such a good rebirth for us who have an ANS Disorder. For which it is causing us to have more onsets then, ever. Yes. You feel much worse then other seasons around Spring and Fall.

Spring and Fall are the worst months for those who have, Dysautonomia. It's bad enough you are imbalance and when the Spring or Fall comes along, people start having some health disorders as in, allergies for example. People have more anxiety and insomnia as well in these times. These seasons cause allot of agitation in people, and can also cause depression do to feeling not well because, the body is doing more to you then what you can handle, and it is scary.

Inflammation can be a major cause in why you feel horrible and, low Vitamin D levels. You also become more fatigue do to the changes in the air, do to pollen in the Spring and Fall. Extra hours of sunlight and rising temperatures can increase the levels of serotonin and dopamine in the body - the chemicals responsible for feelings of well-being. So, you can be feeling more down then the norm. Your body becomes very irregular around the Spring and Fall Seasons. Your whole system is just doing everything you do not want it to do, and it becomes exhausting.

Just remember, when you start feeling like this, your not getting worse and do not start to think that what ever you are taking is causing these symptoms. After all, people with Dysautonomia are weather pertaining. You can read about that in my other blogs too. It is the change of seasons that makes your Autonomic Nervous System get out of whack.

I wish there was a cure, but so far there is not one. Doctors are finding ways to help eliminate some of your symptoms. Dealing with the ANS system is not easy. So be strong and if you start feeling down, get help. As always, if you have any questions, please feel free to write me. Blessings & Light to all. Till my next blog, keep strong and do your best. Never give up.

Why Dysautonomia disappeared in the days...My opinion

2014-03-01T11:09:00.002-05:00

Hello Everyone. Today I will like to take some time and share why I believe Dysautonomia was brushed under the carpet many moons ago and, I fear it will happen again. My readers all know that from what I have written in the past that, the word Dysautonomia was derived from the United States. In Europe they did not know what Dysautonomia was. They knew what an Autonomic Nervous System Imbalance was which, is the same thing.

Today, Dysautonomia is now known as many other illnesses which, are conditions to the Dysautonomia. For example: POTS (Postural Orthostatic Tachycardia Syndrome) is a condition of Dysautonomia but, it is not Dysautonomia. It is just a "condition" of it.

Since I been writing this blog back in 2010, allot of doctors in the United States at the time did not know what that word meant unless, someone who was a patient knew what it was due to their research and, explained to the doctor what it actually is. Doctors would look at you with such a puzzled look in their eyes. They probably thinking to themselves, how on earth did my patient now about this Dysautonomia?

Now, I was educated about Dysautonomia from a Doctor who is an American Citizen but, is Russian. She knew this Dysautonomia very well due to the fact she has it and, many of her patients had it when she was residing in Russia. Now she resides in the United States. My son was diagnosed with Dysautonomia by her back in, 2009. To remind you my son does not have POTS. He has Dysautonomia. I was just diagnosed by my doctors after many years learning from me. I to do not have POTS. I have Dysautonomia.

A person with Dysautonomia has an irregular and imbalance, low on quarts of fluids, in the Autonomic Nervous System which, includes the Central Nervous System. They all work together as a team except, for when your imbalance. Your not 100%. You are maybe 80 %, sometimes 50 % depending on your irregular Autonomic Nervous System. You will have several and many episodes of symptoms throughout the day that, does not make any sense what so ever. Either you feel like your going to pass-out/faint which, we do not. People with Postural OrthostaticTachycardia Syndrome pass-out/faint. Your blood pressure is ALL over the place. Whether it is very high or very low. In a 24 hour period of time, blood pressure is doing what it is doing at all times. It's not steady. Your heart that gives you flutters does flutter in that 24 hour period time when ever it feels like it. Your Temperature in your body, fluctuates all day as well. Your reading could be high into the 100's or low into the 90's. This is happening at a 24 hour period of time every single day when you are having a Dysautonomic episode. Also Fatigue is horrible when these episodes arises and just to remind you, not all people with Dysautonomia are alike.

Now here is the trick. People don't have this episode all the time. You can go on in months feeling ok. Then all off a sudden your feeling ill and, your having an episode of symptoms that can not be explained by doctors and, you can go on for months like this until it decides to fix itself some how which, is the mystery of Dysautonomia. Also, this is when doctors feel that you are fine. That there is absolutely nothing wrong with you. That is where the confusion and the stress comes in and, all kind of misdiagnoses for the patients who will be lead down the wrong road, have all kinds of emotions go through there minds, until these doctors think you need to go see a shrink/Psychiatrist.

As a matter of fact. It is "NOT" in your head. Your body is doing this and it is doing it well. It is not your friend and, we don't want this friend. It is ruining people from having an active and, normal life. Now, to help you out a bit I have said this in my other blogs that, we are weather pertaining. This is not a joke. Your body knows when storms are arising in all parts of the world due to the barometer pressure. I am completely serious. You are a part of this earth and you are feeling it. The earth is all over the place with weather patterns and ,so is your body. And this is a proven fact. I have put in my blogs about foods, and other things to help. To help balance you a bit until the barometer pressure goes back to normal which no one knows when that will happen these days.

So there is so much I want to say and, I can write them in my other blogs later. But, this has to be pointed out. I really do not want to see Dysautonomia get brushed under the carpet like it did way back in the days which, I have written those days in one of my blogs. It existed and it will continue to exist and, people will continue to suffer and, ask for help and relief. I have also written in my blogs medications, supplements, herbals that you can take. I know all this because I am experience with this Dysautonomia. It's like trial and error kind of thing. I live it every single day and, I am here to let you know that you are not alone and, if I can help relief some of your anxieties a bit then, I am very happy to do so because, I know what it is like to be alone in this.

Many blessing from me to you and like I always say, if you have any questions, please feel free to contact/ email me and I will discuss or, help these matters with you the best way I can. I am not a doctor but, I am a very educated and experience person with this Dysautonomia disorders. I live with it. Blessing & light. xoxo Miss Vivian Carrera Roberson.... The writer of Dysautonomia Mania

Dysautonomia Mania: Eliminating sugars can improve your ANS Disorder

2013-11-23T11:17:00.001-05:00

Dysautonomia Mania: Eliminating sugars can improve your ANS Disorder: If you are experiencing any of the following symptoms, chances are very good that the excess carbohydrates in your body are, in part or...

Eliminating sugars can improve your ANS Disorder

2013-11-23T11:10:00.000-05:00

If you are experiencing any of the following symptoms, chances are very good that the excess carbohydrates in your body are, in part or whole, to blame:

Excess weight : Extra weight
Fatigue and frequent sleepiness : extreme tiredness, typically resulting from mental or physical exertion or illness.
Depression :severe despondency and dejection, typically felt over a period of time and accompanied by feelings of hopelessness and inadequacy.
Brain fogginess :Clouding of consciousness
Bloating: is a condition of excess gas in the body, feeling abdominal pressure and at the same time feeling full in your stomach, at times feeling though as your stomach is stretched to full extend and or even feeling weighted down.
Low blood sugar: Also known as hypoglycemia increases the risk of damaging the arteries which leads to the development of heart disease and kidney disease.

* High blood pressure: is the force of blood pushing against the walls of the arteries as the heart pumps blood. If this pressure rises and stays high over time, it can damage the body in many ways.

High triglycerides: a type of fat found in your blood. Your body uses them for energy.

***Just remember that people with Dysautonomia have a wide variety of symptoms and allot of what you put into your body can be the cause of most of it. I know others have more severe issues and then there are others that have mild cases. Not one persons Dysautonomia is the same. After all, our bodies are different from each other. Some will have other illnesses with it or illnesses that caused it.

Did you know that for several million years, humans existed on a diet of animals and vegetation. It was only with the advent of agriculture a mere 10,000 years ago -- a fraction of a second in evolutionary time -- that humans began ingesting large amounts of sugar and starch in the form of grains (and potatoes) into their diets. Indeed, 99.99% of our genes were formed before the advent of agriculture; in biological terms, our bodies are still those of hunter-gatherers.

Reducing the amount of sugar in your diet may make you eat less food overall, promoting weight loss. and for those who are not over weight it will balance your weight.

The pancreas is an organ in the upper abdomen. Enzymes (chemicals) made by cells in the pancreas pass into the gut to help digest food. The hormones insulin and glucagon are also made in the pancreas and help to regulate the blood sugar level. How does the Pancreas control blood sugar?
The endocrine component of the pancreas consists of islet cells that create and release important hormones directly into the bloodstream. Two of the main pancreatic hormones are insulin, which acts to lower blood sugar, and glucagon, which acts to raise blood sugar. Maintaining proper blood sugar levels is crucial to the functioning of key organs including the brain, liver, and kidneys.

The liver acts as the body’s glucose (or fuel) reservoir, and helps to keep your circulating blood sugar levels and other body fuels steady and constant. The liver both stores and manufactures glucose depending upon the body’s need. The need to store or release glucose is primarily signaled by the hormones insulin and glucagon. When you’re not eating – especially overnight or between meals, the body has to make its own sugar. The liver supplies sugar or glucose by turning glycogen into glucose in a process called glycogenolysis. The liver also can manufacture necessary sugar or glucose by harvesting amino acids, waste products and fat byproducts. This process is called gluconeogenesis.

Glucagon : a hormone formed in the pancreas that promotes the breakdown of glycogen to glucose in the liver.

Glycogen :a substance deposited in bodily tissues as a store of carbohydrates. It is a polysaccharide that forms glucose on hydrolysis.

Polysaccharide: a carbohydrate (e.g., starch, cellulose, or glycogen) whose molecules consist of a number of sugar molecules bonded together.

Glycogenolysis : is the breakdown of glycogen to glucose-1-phosphate and glycogen. Glycogen branches are catabolized by the sequential removal of glucose monomers via phosphorolysis, by the enzyme glycogen phosphorylase.

Gluconeogenesis : is is a metabolic pathway that results in the generation of glucose from non-carbohydrate carbon substrates such as pyruvate, lactate, glycerol, glucogenic amino acids, and odd-chain fatty acids.

Sugar Weakens the Immune System

Since the 1970's, doctors and scientists have known that vitamin C helps white blood cells kill viruses and bacteria. White blood cells must accumulate vitamin C in order to consume virus, bacteria or cancer cells. But glucose and vitamin C have similar structures, so when you eat sugar, your body's white cells accumulate glucose instead of vitamin C, leaving less room inside the cell for it to accumulate the vitamin C it needs to fight off pathogens. Sugar, therefore, slows your immune system down.

Here is a reminder of some of the other harmful effects of sugar:

Sugar contributes to anxiety, depression and hyperactivity.
Sugar reduces HDL cholesterol levels and raises LDL cholesterol levels.
Sugar can cause hypoglycemia.
Sugar can cause kidney damage.
Sugar leads to tooth decay.
Sugar can cause mineral deficiencies.
Sugar can cause headaches and migraines.
Sugar can increase fatty deposits in the liver.
Sugar can inhibit your ability to think clearly.
Sugar can increase your risk of blood clots and strokes.

***I am here to educate and help those in need. I am not a doctor and I get my resources through research and other medical doctors. May my time on this be very helpful for those in need. I know it is and can be hard to have an illness that others do not understand, nor is it popular in any way, yet people are suffering from this Dysautonomia. Many blessing and light and I will continue to bring out awareness as much as I can. Feel free to contact me at any time. The writer of Dysautonomia Mania (Miss Vivian Carrera Roberson)

The Benefits of being a Vegetarian/ Vegan with Dysautonomia

2013-10-14T12:04:00.000-04:00

Hello Everyone! So lately my son and I have also changed our diets. We are still "Sun Gazing" which you can learn about that in my other blog I wrote last month.We have also did some research on Vegetation and how it benefits our bodies. And of course our lovely fruits. We are no longer eating meats. It was hard for me but it can be done. My son is a full Vegan. I am a Vegetarian. Yes. There is a difference. Being a Vegetarian you still eat dairy. Being a Vegan you do not. Most people around the world are Vegetarians because it helps you in so many ways and many people are getting smarter about taking better care of their system/body. Being a Vegan is very strict. You will be eliminating so much but it is much more healthier then being a Vegetarian.

Did you know being a Vegan, you can still get your Vitamin D? Many Vegetables have Vitamin D. Kale for one is a good example. Mushrooms is another one that is loaded with Vitamin D. You can do some research on the internet on which Vegetables have Vitamin D. Not to forget we "Sun Gaze" as well which gives us our Vitamin D. With Vitamin D you also need Calcium. Okra, Almonds, Collard Greens, Spinach, Broccoli, and the list grows.

All this is Vegetation from the grounds of our earth. The best and healthiest benefits for your body. All Vegetables have the Vitamins and Nutrients your body needs to stay healthy and strong. Since I been doing this, I have lost weight and still loosing weight. Eventually my weight will go to its norm for my body type. We are all shaped differently and you will fall into the weight you should be at. That is also a very good benefit for allot of us who are trying to loose weight and are always on some sort of crash diet or gimmick because lets face it, no one wants to be over weight and we all LOVE to eat.

You also get your protein from eating nuts. Eat ALL the nuts you want. It is good for you. You have Peanuts, Walnuts, Almonds, Sun Flower Seeds, Pumpkin Seeds, etc. Very tasty and very healthy. For those who have a Peanut allergy, find out what nuts you are not allergic too. Also, you get protein from Vegetables. Examples to name a few: Lentil, baby Lima Beans, Kidney Beans, all Beans, Peas, Onions, Spinach, to name a few. You can find most of this information on the Internet as well.

Fruits are sweet and tasty. How can you go wrong with fruits? They are delicious and makes a body feel good. Lots of Nutrients in our Fruits as well. Apples, Avocado, Bananas, Grapes, Peaches, Pineapple, and the list grows. You can eat all the fruit you want as well. All this takes allot of getting use too if you are use to eating meats more then vegetables. For those meat eaters I can tell you that meat is not good for the body. They will say it is but it is not. We eat way too many meat products in general. Meat is in everything almost. And then they have to kill these beautiful creatures and drug up your meats. How can you eat something you look at and say, "Oh how cute". Yea....you just ate that cute animal. Sorry. A little emotional over this since I became a Vegetarian and thinking of becoming a full Vegan soon. Do you know you eat more then a pound of meat a day? You ever wonder why you like meat so much? You find yourself eating more meats then vegetables.

Eating meat has an increase rate for Diabetes, Cardio Vascular Disease, and certain Cancers. I think by saying that, is enough to let you know what you are consuming into your system. If you want to feel better and want to get healthier, not only is the Medical Facilities trying to figure out how to help you but, you are giving yourself a chance to find away to feel better and become more disease free from what you consume into your body. You are what you eat and that is a true fact.

You can do some research on the internet for what I am speaking about in my blog. You can also contact me through email or on my blog and I can help you as well. I did my homework as usual and I am here to help you feel better. I am feeling better and I will continue to feel better. And so is my son. All in positive doing and thinking. After all, this is your world. How do you want to live it? Enjoy. :)

The Benefits of Sun Gazing with Dysautonomia

2013-09-10T18:36:00.000-04:00

So, what is "Sun Gazing"? This is something you do to nourish your body and bring out your spirituality.

For those who have exhausted there health in medications, there are other ways that are far more natural and it helps your system. I know this due to; I sun gaze and so does my son. When all else fails and you are still not feeling better, this is something you might want to look into. I will add a couple of videos that I have found on YouTube to show you how to sun gaze and the benefits of sun gazing.

To give you a little introduction, sun gazing is very easy. All you have to do is sun gaze for 20 seconds the first time, and increase it to 30 seconds the next, and so forth from either dusk or dawn. This means that the UV rays are at "0". That is correct. Something your Ophthalmologist might not know about btw since they say the sun is bad for you. It is not. It is one of the most ancient uses of all time. The sun is not bad for you at all. It is your food source and healthy. It can also help you loose weight and help you improve your eyesight. The UV rays on the other hand is not safe so make sure you check your times on when the UV rays are at "0". The safest time to stare at the sun is early morning or when the sun is going down in the evening.

The Pineal Gland is one of the most reached glands in the body. The Pineal Gland is reddish-gray and about the size of a grain of rice. We sun gazers call this the 3rd eye which is part of your brain. We point between both eyes which in the middle is your 3rd eye. Sun gazing opens up your Pineal Gland. When you sun gaze for at least 3 months you will start to feel so much better. your mood, no tension, and you will feel more alive then your norm.

The sun will help your Autonomic Nervous System. People with Neurological issues, everything. you can search the internet on this topic that I am writing about and you can see how it works in so many ways. One thing I can say is I have not been to the doctors and I have been cancelling allot of my appointments because, I feel so much better and I am decreasing and not taking much of my medications like I use too. The same with my son. Just an FYI for those who are wondering about this Sun Gazing. I know we are all different but how different are we really? The Sun is a needed source on this earth. Without the sun you will feel lousy, you will not have food nor will our plants, trees, grass, etc will grow. We need the sun to survive on this earth.

Here are the videos that will teach you about sun gazing and don't forget to look up other articles on the internet. Enjoy and happy sun gazing to you!

https://www.youtube.com/watch?v=m60latH_UFc

https://www.youtube.com/watch?v=cHfwAbn7jvQ

https://www.youtube.com/watch?v=JgJxrimJOWQ

Social Security Disability for Dysautonomia

2013-02-06T10:00:00.001-05:00

Good day everyone!

***The information I have below is from disability secrets.com. This is to help those who have questions on; if they can go on Social Security/Disability with Dysautonomia. The link is attached as well. I hope this helps.

http://www.disabilitysecrets.com/conditions-page-2-55.html

Dysautonomia describes any disorder of the autonomic nervous system. (The autonomic nervous system controls the operation of organs and functions as body temperature, heart rate, digestion, and blood pressure.) Some autonomic dysfunction disorders are:

postural orthostatic tachycardia syndrome (POTS)
pure autonomic failure (PAF)
orthostatic hypertension
multiple system atrophy (MSA)
inappropriate sinus tachycardia (IST)
neurocardiogenic syncope (NCS), and
neurally mediated hypotension (NMH).

Because dysautonmia disorders can affect any body system, the symptoms of dysautonomia and their severity differ widely among patients.Symptoms can include fatigue, fainting, digestive disorders, headaches, nerve and muscle pain, orthostatic hypotension (blood pressure fall when standing up), anxiety, significant sleep disorders, and sensory disorders.

Can I Get Disability for My Dysautonomia?

The affect of dysautonomia depends on the specific dysautonomic disorder the patient suffers from. Although many dysautonomic disorders can be managed, some dysautonomic disorders can be disabling and eventually fatal.
When you first file for disability benefits, the Social Security Administration (SSA) will look at your impairment to see if it meets the requirements of one of the medical conditions in its listing of impairments; if it does, your claim will be automatically approved. If it does not, the SSA will continue its analysis to see whether you are eligible for disability because you can't work due to the limitations caused by your dysautonomic disorder.
Dysautonomic disorders are the not the subject of a disability listing, so the SSA must determine if the symptoms you experience prevent you from working. To do this, the SSA will carefully review your medical records and prepare a residual functional capacity assessment (RFC) that discusses in detail how your symptoms affect your ability to perform certain work-related activities.
For example, if you suffer from neurocardiogenic syncope (NCS), prolonged sitting or standing can induce fainting. Given this severe limitation, your RFC might state that you would be unable to perform any jobs that required sitting or standing for any length of time, unless you were given the opportunity to lay down as you needed. Because of the severity of this restriction and the unlikelihood that any employer could accommodate you, you would likely be approved for disability. At the least, your RFC should restrict you from heavy lifting and working around dangerous machinery, since the possibility of fainting during this activities puts you and others in danger.
As another example, individuals with postural orthostatic tachycardia syndrome (POTS) suffer from fainting, intense fatigue, and severe tachycardia (racing heart) upon standing and when performing basic chores such as housework. Therefore, an RFC for a disability claimant with POTS might state that the individual would be unable to perform jobs that required light levels of exertion such as janitorial positions, restaurant work, light warehouse work, and some secretarial positions.
After completing your RFC, the SSA will combine it with your past job skills, education, and age to see whether there are any jobs you can safely do. For the details of how the SSA makes this assessment, see our section on RFCs.

Compassionate Allowance

Some dysautonomic disorders rapidly progress and shorten a person's lifespan. Because of their severity and poor prognosis, these dysautonomic disorders qualify for automatic approval based on what the SSA calls a compassionate allowance.
An example of one such dysautonomic disorder is multiple system atrophy, or MSA. If you suffer from MSA, advise the SSA of your diagnosis as soon as you apply, and provide them with your complete medical history as it relates to your MSA. For more information, see our article on compassionate allowances.

Other Disability Requirements

In order to be eligible for disability, you may not earn more than $1,040 a month, and your illness must be serious enough to prevent you from earning that amount for at least 12 consecutive months.
SSDI. To receive SSDI, you must have a significant work history with employers that paid taxes to the SSA. For more information, see our section on SSDI eligibility.
SSI. SSI is available to people who do not have a qualifying work history; however, you must meet certain asset and income limits to qualify. For more information, see our section on SSI eligibility.

by: Melissa Linebaugh, Contributing Author

Homeopathic Medicines/Supplements for Dysautonomia

2012-10-24T19:06:00.001-04:00

In this Blog I would like to add the "Homeopathic Medicines/Supplements" that actually can help you with your wide variety of symptoms you have with Dysautonomia. I know this due through experience and also the help of a Medical Doctor who knows of these Homeopathic Medications, that actually does work and can help you.

What is great about taking these is that you can take them with your medications without having any side effects but as always, consult with your doctor first or someone who is experience with Dysautonomia. I am not sure what medications you take and I do not know all about Medicines because, I am not a doctor but, an experience patient per say.

These types will help with your main symptoms that most Dysautononomics complain about. Many do not like having that anxiety feeling and are so sick of the wide variety of body pain that you have to deal with day in, day out. It's a constant with some and with others it just shows up without warning. Also, Allergies and Sinues play a big part as well.

I also wanted to add that it takes for these Homeopathic Medicines/Supplements to work in your body; give it about 20 minutes tops. Also for Anxiety: If you know your body and you know when that feeling is going to kick in, take it before it happens. Depending on your Dysautonomia, some don't know when that feeling is going to happen. Remember, we are all still different with our symptoms and diagnoses. Some live with that feeling constantly and others have it come on every now and then. On that note: just take it. It won't hurt you and no side effects.

So, here we go:

"Sinusalia"... Company Name: Boiron...Homeopathic Medicine for Sinus. It helps Congestion & Pain, Sinus Pressure and Headaches. There are 2 tubes in a box. Small Pellets. Take 5 Pellets a day or as needed.

"Gelsemium Semperverens 6"... Company Name: Boiron...Homeopathic Medicine for Anxiety. People take this for Stage Fright, Apprehension and Fever. Works "AWESOME" for Anxiety Disorders. So far I find this the best. Take 5 Pellets a day or as needed.

"Niacin"...Company Name: Natures Bounty...Vitamin Supplement for the Nervous System. Flush Free. Take 1 Tablet a day.

" Super Collagen +C"... 6000 mg...Company Name NeoCell...Dietary Supplement.Great for Body Pain. Gluten Free. An Anti-Aging Supplement. I also noticed on this, you can loose some weight. Take 1 tablet a day.

"Calm Forte"... Company Name Hyland's...Homeopathic Medicine...Sleep Aid. 1 or 2 Tablets as needed per night. Works pretty good. Helps with Stress. This is a Non-Habit Forming which is nice to know.

"Moon Drops"..Distributed by Historical Remedies...These are Homeopathic Lozenges for Sleep Aid. Dissolve 1 or 2 Lozenges as needed at night. Helps you relax.

If you have any questions on the above or need more information please contact me by email or comment through my blog. I will get back to you as soon as I can. Till my next blog, I hope this bit of information will help you and I will continue to write in my blog about Dysautonomia from time to time. Until then, blessed be and keep spreading the word.

Dysautonomia/Dysautonomics-Differences

2012-06-05T19:12:00.001-04:00

*Note: This information I give you on Dysautonomia is information given to me by a special doctor. I am not a doctor or, here to act as a doctor. I am here to write and bring awareness to those who are interested in knowing about, Dysautonomia.*

I wanted to write today about teaching other's about the differences of Dysautonomia/Dysautonomics. I know as you read other blogs, websites, videos, research, etc., that they all tend to say something different and it gets very confusing to us all who, are just trying to figure out what is going on with our bodies. There are many different blogs today and many different Facebook pages that have communities for people to join, so they can vent, talk about their heath, and so on. It's a way to communicate with others who have same or alike symptoms and, bring awareness. We all have a story to tell ,yet we are all different. Not all of us is alike but, similar. So let me throw some facts at you that can give you some insight on the differences on ,"Dysautonomia".

First off, Dysautonomia is an American word. In Europe, Dysautonomia is called "Autonomic Nervous System Disbalance". That is probably why allot of them don't know what Dysautonomia is. But ,if you worded it as "Autonomic Nervous System Disbalance, they will know what you mean.

Another fact is, "Neurasthenia" is different from Dysautonomia. I thought it was the same but, when I finally got some information to clarify it, I realize it is different. Neurasthenia is the exhaustion of the "Nervous System". for example: stress as a severe illness but not a real depression. Neurasthenia is, an "after stress reaction." It is not in your head. Your not crazy. Your ANS is totally exhausted. This is what happened to people around the time of world wars. It still happens to many people including our solders today and yet, we are still behind in our research.

Postural Tachycardia Syndrome (POTS): POTS is an "Autonomic Dysfunction" but not of the "Central Autonomic System". Many people with POTS faint and that is very frightening and debilitating. It is a "condition" of Dysautonomia.

Dysautonomia is the dysfunction of the Autonomic Nervous System which is part of the "Central Autonomic Nervous System (The control center of the the brain and spinal cord)" which is, the internal organs supplied by the Autonomic System. Examples: IBS (Irritable Bowell Syndrome), Tachycardia , Hypostatic Hypertension , Anxiety,etc., are all controlled by the "Central Nervous System". Dysautonomia is an "Autonomic Storm" which is when everything is happening all at once, and that gets very scary. That is why when you go to the doctors and you tell them about this symptom ,that symptom, and your symptom list grows, this is when they get very confused. You did not just walk in and say, "I have issues with my stomach" which they would probably do a barium test to start off with. Makes it simple, right!? You walk in and say to your doctor for example: " I have issues with my stomach, it hurts, my hands hurt, my back is killing me, my heart is throbbing really fast, I am having blurred vision, my ears are making a high pitch sound, I feel light headed and dizzy at the same time, I'm having some sort of anxiety or panic that I can't explain,etc, etc, etc. Now your doctor is ready to send you to a, shrink. He has no clue what is going on. It is just way to many symptoms to even think of what particular test they can do. So, you will probably be written of as "Crazy". Sorry folks. I do have a sense of humor and I do understand whole hearted what you are going through and what the doctors are going through too because, they do not know what to do at that point. They did not study Dysautonomia in College/ Medical School. But yet, it is an American word which, makes this a mystery to me. Hopefully I will have that answer for you some day.

Well that is all I have for now. If you have any question, or would like to chat with me, please send me an email or make a comment and I will get back to you. Thanks for spending the time to read my blog.

Dysautonomia climbing and getting confusing

2012-03-16T10:15:00.000-04:00

The more I continue to research, the more I learn from others and the more videos I see, Dysautonomia has come out of the wood work to the max. My most recent read is of a male infant with Dysautonomia. First off, not many men were coming out with their symptoms but mostly, women. Men are just finally feeling comfortable about talking about it. More and more male infants and male toddlers, male preschool, male middle school, male high school is on the rise. And, lets not forget adult males.

Dysautonomia is not just a female dysfunction. It's all sex. It's everyone of all ages. Also, Dysautonomia affects everyone differently. Some cases can be devastating and some cases can be mild,and there is, in between. The numbers are growing and people are desperate for a cure. They want awareness. They want someone to do something about it. I know I do.

What makes this even more complicated is everyone has a story and a different story with different symptoms but yet, similarities. Most have been told from certain doctor's what they have and yet most of us are not able to grasp at everyone's symptoms, but from what we all have experience and of course what we were told by that certain Physician. Yet, every Physician is not on the same page. How is this possible? Why? What is the problem here? Is it really this complicated? Well, obviously yea!

It really is very aggravating. With so many symptoms and a WIDE variety, it just does not stop. People are trying to help from their experiences. Some people are on Protocol, some people are doing Natural Remedies, some are hoping their symptoms will go away soon and, taking a wide variety of medication for each and every symptom and, the list goes on. Not one person is really the same when it comes to any health disorder. This is what makes things very complicated for all.

Even media has taken a turn to help those with Dysautonomia and yet, still no answer. Media even questions it. If the media is questioning and trying to also bring awareness, how is anyone going to actually help? Well, from my point of view, we are all taking precautionary steps to be able to share and help as much as we can. Just remember, what is good for one person might not be good for another. This is where people start getting depressed and giving up hope.

We can't give up hope. We just have to continue down the path we are going. I know it sounds easier said than done. But, we can't go around feeling down on ourselves. And, I know sometimes that is hard too. It's like you are in a no win situation. We are all giving a story. We are all trying. We want to help. You want to help. That is the "positive" of it all.

Alcohol and the ANS Dysfunction

2011-12-29T10:50:00.000-05:00

Happy Holidays, Merry Christmas, Happy New Years to everyone! It's that time of year for cheer and fun. We go though this every year. ; ) With the Holidays we tend to have lots to do and so much stress is added to our system. Also the wonderful food and spirit and ,over doing it. How can we help it? It's so good.

For some of us, there are just certain things that can aggravate our system. One thing is Alcohol. Alcohol does allot to the ANS (Autonomic Nervous) system. I am not saying you can not drink but ,what I am saying is you will have to figure out with Dysautonomia if Alcohol does something to your system, which in most of us, it does.

First off Fibromyalgia is piece of Dysautonomia. Not everyone with Dysautonomia has Fibromyalgia. But, with the ANS system Alcohol plays a major roll when too much is consumed or, maybe just a little. It depends on your Dysautonomia and how it affects your system.

Alcohol affects the nervous system by stamping down the signals between the spinal cord, nerve system and the brain. With that being said what happens is your body will feel awful when over consumed with Alcohol or, consuming just a little. It does not happen right away. It will happen a few days later and it will continue it's process for some time. Depending on each and every one of us on how our system functions, and functions with Dysautonomia.

You will start feeling light headed, dizzy, pain all over your body. You will have a hard time with your mobility functions. Your knee's will hurt and ache, your back, your chest, your head, etc...You will feel so fatigued. These symptoms can last for a week to several months.Yes. That is scary and no fun indeed. This does happen and if you were wondering why your body has started reacting weirdly, think about what you consumed or what you ate or have you had plenty of rest. It all plays a "huge" factor when it comes to Dysautonomia.

The only way to feel better is to get your system back on track. Drink plenty of water and get plenty of rest and do some light exercise as in walking. Stay away from sugars if possible or not consume so much. With those simple task, you can conquer this nightmarish feeling. If you have any questions on this, please feel free to contact me. It will be my pleasure to help out the best way I can.

Stay strong, keep confident and do not give up. You are not alone. Till next time...Have a safe and Blessed New Years!!! : ) xoxo Miss Vivian

Dysautonomia and Smoking horrible combo for ANS System

2011-10-10T13:32:00.000-04:00

It's been a long while since I have put up a blog. Like I said before in my other blogs that, it does take some time to write about it because I too go through it and, so does my son. I am able to share our experiences with Dysautonomia and, help out others who need the help and need the education on what happens to someone with, Dysautonomia. I also get my knowledge through educated doctor's from Europe who know this disease, very well.

I have also read up on allot of other people who have Dysautonomia and read their stories on, their Blogs. To you all, my heart is with you and, if I can shed some light on you in some way, I will do my best. I know some are going to write a Book. Much blessing to you as well on helping those understand about their disease that is very frightening when, most doctor's here in America have not researched it or learned it in, medical school. My primary care doctor is one person who is honest and up front and did say that, he never learned it in school and that he felt he just did not have the energy to go back to school to, learn it. I said, "no problem. I understand. I will teach you". He is learning from me and I notice he has been doing his homework because, he cares. It is always a plus to have a doctor who is willing to work with you. If you seem to be going no where with your doctor and you feel doomed then, it's time to look for another doctor who is willing and able to help you. They are out there so, never give up.

I would like to take my time to write about "Smoking" and "Dysautonomia", combined. We all know that smoking is not good for you and especially those with an "Autonomic Nervous System Dysfunction". Cigarette smoking is very harmful for those with, Dysautonomia. If you are smoking and you know you have Dysautonomia, I have two words for you; "PLEASE QUIT". That simple said and, that hard to do "mentally". I know. I smoked with Dysautonomia. It's been a year now that I quit and I am still going through allot of changes. Let me tell you that it was not easy but, I did it cold turkey. I never thought I can do it. I loved smoking. That Cigarette was my best friend. It did everything with me. In my car, on the phone, you name it. It was there. You know how hard it is to let go of a friend who is always their for you!? Well, if it's a friend who is killing you and you don't know it or are ignoring all the ads, commercials, family, friends, etc...then, it's time for change.

What is the purpose of taking care of yourself medically when you have a very harmful chemical in your hand and it's interacting with your medications and your ANS system? Do you know that Cigarette smoking contributes to most of your symptoms? Well sorry to say but, "it does". You really need to take the time to stop and think that if you want help; one way is to get rid of those nasty chemicals that are contributing to your health and making it worse for you. If your body is imbalanced and you have side effects to medications then, you need to ask yourself, why am I putting bad chemicals into my body and it is destroying my health?

Let me name a few chemicals from Cigarettes that you are contributing to a shorter life span: Ammonia, Tar, Acetone, Nicotine (Insecticide which is addictive), Carbon Monoxide ( car exhaust fumes), Arsenic (rat poison), Hydrogen Cyanide ( gas chamber poison), Radon (radioactive gas), and the list goes on. There are at least 4000 chemicals in Cigarettes. Yeah...scary huh!? Do you still want to smoke after reading this? I know, I wouldn't.

If you really want to quit, it's time to do something about it. If you don't, I am praying for you. Enough said. I am not the one to lecture anyone; I am just here to help and make you understand if you want to get better and you smoke then, you can eliminate allot of your symptoms that you have when it comes to Dysautonomia. People with Dysautonomia can not smoke, I repeat, Can "NOT" smoke Cigarettes. If you constantly get respiratory infections and have bronchitis allot then you know those are signs to quit. Your lungs are crying out to you. You can't breath, you can't even catch a breath. Next thing you know, you have COPD. You lung capacity function has declined to the max. I know. That is what happened to me.

You want to here some good news? Since I quit smoking, the doctor's thought it was a miracle. My lung capacity has climaxed/doubled. Yup! They could not believe it. Usually people with COPD are doomed. I guess I was lucky. I quit smoking. That simple. I can breath, I can catch my breath. I will have to say as well that your body will go through allot of changes but I can assure you that the end results will be better then if you had kept on smoking. Allot of my harsh symptoms of Dysautonomia has pretty much gone away to some extent. I am not suffering as harsh as I was and I do feel much better. It will take more time. At least 4 more years to go for your cardiovascular system to be in better shape. All together it takes 5 years for you to get better. Believe in me, it's worth that 5 years. After all ,you probably smoked for more then that.

My next blog I will write will be on Alcohol and Dysautonomia. Until then, keep strong, keep the faith, and if you have any questions, please feel free to contact me. This blog is about my knowings on Dysautonomia and everyone with this disease has a story and can help. Learning from each and everyone of us is, a plus.We are all bringing awareness. Blessed be. xoxo Miss Vivian

The Anxiety from within

2011-07-30T09:30:00.000-04:00

That Anxiety feeling. Is that what it is? Are we having an "Anxiety Attack" or is it all in our heads? That awful feeling that comes from within. It just comes out when ever it feels like if for no apparent reason at all. That feeling is horrible, debilitating, someone call me a shrink or give a pill to stop it! People are looking at me like I am insane or just plain crazy. Am I? Why do I feel this way? I "HATE" it! Why is this happening to me? I asked why? I just want to go for a walk in the beautiful sun. I want to go to the beach but, I can't. I want to be in open spaces but, I can't. I want to go to the mall, make it to the second floor but, I have to come down, fast. My chest is pounding. My hands are sweaty, I am going to pass out. No one in my family understands me. They think I am insane. Get me out of this nightmare, PLEASE! OK....can you relate to what I am saying? Because if you can, your not alone. This happens to many people with, Dysautonomia.

To give you some input, this is what people would call "Agoraphobia" but, your not a true "Agoraphobic". Believe me when I tell you this. You body's Autonomic Nervous System is imbalanced. It has a slight dysfunction of the Flight/ Fight response reactor to our brains. It's our Neurontranimitters that sets off these singnals because it functions with your, Autonomic Nervous System. This is one area that they really need to help find a cure. It happens quit often for no apparent reason at all. You are not crazy and you do "NOT" need a shrink (excuse my French). This is the first place your doctor who does not know about Dysautonomia or know about it from experiences will send you, or advise you to see a Psychiatrist. After all, they are doing their job, and they have no clue what else to do at this point because it happens, quit often.

That feeling from within is what brings you mostly to the emergency rooms, or doctors office. To remind you, at this point you can try to relieve that type of feeling by doing natural things for your body. Good example is "meditating". You can give that a shot and see it will work for you. If not, you might need a small dose of anxiety medication and see if that helps relief those awful symptoms a bit. After all, your not crazy and it is part of Dysautonomia's Symptoms. Also, I would advise seeing an Osteopathic doctor who will help balance your Autonomic System. I have one on my blog if you live in my state. He is very good with what he does. I know through experience. I am not telling you this just because. I am telling you this because I live it. Just look through my blog and you will find him. I wrote about him recently. This goes for children, teenager's, and adults.

Teenagers deal with this feeling quit often. This is why most of them are not in school and are either being tutored at home or finding other ways of education. After all the school system will put you through allot of visits to the school ,and they will try and find away to get your child an education. Believe in me when I say, it is a "BATTLE"!! Reasons why, is they have no idea what this Dysautonomia is, and they are not educated about it at all. We are the ones that will have to educate them. They will think that your child has some form of ADHD per say and set you in the wrong direction. Then, the nightmare begins. I wish no one would have to go through this but, you will and just stay strong for your child. After all, you have the power to help your child and understand what they are going through. It can be done. Keep your head up and don't give up on your child. After all this is their future we are talking about and if we stay on top of things, they will be OK.

If any one has any questions or will like to talk about this, please send me an email. I will be glad to help you the best way I can.Till my next blog, stay strong, stay sweet, keep your faith. I am with you all the way. xoxo blessed be Miss Vivian

Weather pattern causing you pain

2011-06-21T09:33:00.000-04:00

Hope this blog finds everyone well! I will like to share today about body pain with Dysautonomia. The pain with this disease is no fun. We call it "Fibromyalgia". It is in the same family. This pain gets out of control with the type of weather patterns we been having lately all around the world. We do know when it rains outside, you always here people complaining about their joint pain, arthritis is acting up, sciatica, etc. It really does. The problem is when you have Dysautonomia, those pains are ten times worse then the average person. Yet, they do not understand this because, they never heard of this disease or, do not have it. That plain and simple.

This pain your having has allot to do with the earth atmosphere. The barometer pressure of the weather patterns.You can't get any relief what so ever lately. You find yourself complaining more about your pain then any other time of your life with this disease. It seems to happen quiet frequently.

Well ,that is because people with Dysautonomia are "Weather Pertaining". My words to you is, "you will get through it". Listen to your body. Do not over due it. Try and find relief by taking Tylenol, Motrin for the pain, meditating, relaxing, getting plenty of rest which is the number one thing to do when your body gets like this. When you do get that chance, try and go for a walk. I know after walking for a bit, you can relieve your pain, some what. You do not want to stiffen up or get caught up in that lazy mode. It will only put you in a depressed mode. Motivation is key to a certain extent. Make sure you give what your body needs to replenish itself.

I know it is not easy. It does seem easier said then done but, we have to keep trying to feel better. We have no choice. We don't have a cure yet. But I do know that when the weather acts up whether it is cold, hot, humid, rainy, etc., people with Dysautonomia are effected by it in ,more ways then one. It can make you feel crippled.

On that note, I will continue to write more soon. Try and get your Vitamin D when the sun is out. Keep a positive attitude. Stay focused. I'm with you all the way. : ) xoxo blessed be, Miss Vivian C. Roberson

Boston Osteopathic health

2011-06-03T12:16:00.000-04:00

http://www.bostonosteopathichealth.com/index.htm

Dr. William Foley is an OD Doctor out in Newton Massachusetts. He works with people who have Dysautonomia and, he knows about Dysautonomia. I know him personally and asked him if I could share his information and, he did give me permission.

Please click on his link and learn more about what he does. I can assure you, he does help those with the Autonomic Nervous System Dysfunctions.

Allot of people might ask, what is the difference between an OD(Osteopathic) doctor and an MD(Medical) doctor? The OD doctor works with his hands. He can get your system flowing in the right direction. The MD doctor works with machines and medications. Both Doctors go to school for 12 years.

In reality, BOTH doctor's are very important for your health. Never exclude one. You need them all to keep you healthy and, help you with your health.

For those who live to far to see him, ask around to see if you can find a good Osteopathic doctor in your area. I believe they will help you with your imbalanced system.

If you have any questions, please feel free to ask me or send Dr. William Foley an email.

Till my next blog, blessing to all.

This is a very good rescourse on Dysautonomia

2011-04-10T11:23:00.000-04:00

http://clinicalposters.com/news/2011/0325-dysautonomia-mitochondria-pots.html

There is a video of a 17 year old girl that talks about her pots. She was at Mayo Clinic. Please watch video and read what they say about Dysautonomia. Keep raising awareness peoples. I know it's not easy. I will share with you my stories very soon. Not everyone has a glorious story to tell and I am sure when you hear mine, allot will relate to what I am dealing with. xoxo and blessed be. Miss Vivian

Piracetam (Nootropil) used for Dysautonomia in other countries

2011-02-20T10:56:00.003-05:00

Well, I did say in my past blogs that I will find the medication that some from other countries use for, "Dysautonomia". I am not sure if it is the cure but,I am learning from the Doctor who is teaching me about Dysautonomia that it works and, from other resources in, other countries.

I also have relatives in Europe so, I had an Aunt do some research for me recently and, speak to their medical field in their area. According to her, "Nootropil" is what they use for "Dysautonomia" and that you need a prescription for it.

After hearing that I did, more research. I searched the internet and found Nootropil here in the, USA. We call it "Piracetam-Nootropil". When I looked up what we used it for I was very surprised to what, I read. It was not used for Dysautonomia but, for other things and other medical issues.

We call it the anti-aging "Brain Drug". I read an ad that said: "Wake up your brain! - With Piracetam (Nootropil)" It is the "Smart Drug"
yup! To my surprise.

For some information to my readers: *Piracetam (Nootropil) improves brain function and stimulates the central nervous system without any toxicity or addictive properties.

As I searched further to see what it does medically I found that it was used for certain health issues as in Parkinson Disease, Dyslexia, Alzheimer's, Anxiety, Dementia, Depression, Epilepsy, Insomnia, Migraines, Multiple Sclerosis, Schizophrenia and, Stroke.

So pretty much it helps the Brain and the Nervous System which is part of the Autonomic Nervous System (ANS).

I am still researching this medication and trying to learn more about it. You can ask your doctor about Nootropil. Just a reminder: ("I am not a doctor" so, check with your doctor first.)

*I spoke with the Doctor who is teaching me about Dysautonomia and she says that some with Dysautonomia take Nootropil for relief. This is what she said: You should only take 25 mg of Nootropil. I know they come in big dosages but you will have to cut it down. You take it for a week. You do not use this medication for a long period of time. Only when your symptoms are horrible.

To my reader's: Let your doctor know about this medication. Tell them what others from other countries are using it for. Give them knowledge so they can research this further and find out how it works for those with, Dysautonomia. I will still continue to read and study up on this Nootropil that helps some with Dysautonomia.

I will be writing more about this medication soon. I will keep you all posted. Thanks for reading my blog and if you have any question's please send me an e-mail.

This is good news! : ) Keep up the good work for all those who are writing about Dysautonomia and about themselves, who have it. You are the ones that are giving people like myself,inspiration to write and, help. Our time is now. There is hope. Never quit. I know I won't quit on you. After all, you deserve good health.

Once again, if you have questions, please feel free to send me email.

xoxo Miss Vivian C. Roberson (Publisher of "Le Dysautonomia Mania")

Dysautonomia: Types of Dysautonomia

2011-02-15T13:11:00.000-05:00

Here is some of the different types of Dysautonomia:

* Local Dysautonomia
* General Dysautonomia
* Reflex Sympathetic Dystrophy
* Autonomic Neuropathy
*Genetics

Types discussion:

Most physicians view Dysautonomia in terms of failure of the sympathetic or parasympathetic components of the ANS(Autonomic Nervous System), but Dysautonomia involving excessive ANS activities also can occur.

Dysautonomia can be local, as in reflex sympathetic dystrophy, or generalized, as in pure autonomic failure. It can be acute and reversible, as in Guillain-Barre syndrome, or chronic and progressive.

Totally Different from regular Dysautonomia where people mistaken to think it is the same is:

Riley-Day syndrome is an inherited disorder that affects the development and function of nerves throughout the body. This is Familial Dysautonomia.

Familial Dysautonomia and Dysautonomia are "different". Many doctor's now about the Familial Dysautonomia. This condition is seen most often in people of Eastern European Jewish ancestry (Ashkenazi Jews), where the incidence is 1 in 3,700. The disease is caused by a change (mutation) of the IKBKAP gene on chromosome 9. It is rare in the general population.

I will continuously bring up these types through out my blog from time to time. It is important to know the different types.

"Dysautonomia affects men and women"

2011-02-06T13:11:00.000-05:00

I wanted to write a little bit about this disease on how it does affect both sex. As you will see, many women are not afraid to share their health concerns and issues compared to men. You will see many blogs of women and Dysautonomia but, where are the men? Very few men will share.

Dysautonomia is not just a female disease. It is a disease of both male and female. We need more men to share their stories who have Dysautonomia or, believe they have it but are afraid to come forward with it.

Good example on how I know is because my son has Dysautonomia. That is correct. My son got it from "me". It is called "Genetics" in my case.

We all have hormones in our bodies and, hormones play a big part with Dysautonomia.

The reasons this disease is on the rise here in America because, this disease arises from different parts of Europe. Especially Germany or, Russia as a good example of where it might of started. We are mostly or, maybe all pretty mixed with different ethnic backgrounds. We are no longer just one breed.

I feel what is important is we all need to figure out our family history. For example: "Who are our ancestors and what countries are they from?" "What types of diseases did some of our ancestors have back in the days?" And the list goes on.

If we can find some answers, we will be very surprised on what we find. If we want people to research like Scientist and Doctor's on this disease, we need to give them a history of health concerns from our ancestor's. This could be "one" of the reasons we are not able to find a cure yet.

Some people might be on protocol on certain medications but, it does not work for everybody because, we are all different. Dysautonomia is different in each and every one of us. There are different levels of Dysautonomia.

So to conclude, men are as much at risk as women. We need every single person/sex who have Dysautonomia to keep coming forward and sharing their stories. We need more men to come forward about this disease. Don't hold back. The more we speak the more we will come closer to some type of help and hopefully in the near future, a cure. Until then, keep spreading awareness.

Till my next blog, feel free to contact me through e-mail if you have any questions or concerns. To remind you, I am not a doctor but learning from doctor's who know about this disease. I am here to help out and hopefully succeed in some way so that everyone can live a happy and healthy life.

Definitions of Dopamine, Norepinephrine, Epinephrine

2011-01-17T09:28:00.000-05:00

Hormones to stress response which plays a"big part" with Teenagers with Dysautonomia. Here are the definitions. In my next blogs I will write them all more in depth. It is very important to know each one of these in the connection with Dysautonomia and there is allot to write about all 3.

Dopamine is a neurotransmitter which is produced by the brains of many organisms, including humans. Like many neurotransmitters, dopamine has several different functions. It plays a critical role in the function of the central nervous system, and it is also linked with the brain's complex system of motivation and reward. Altered levels of dopamine in the brain can cause a range of symptoms and problems, ranging from Parkinson's disease to Attention Deficit Disorder (ADD).

Norepinephrine is a type of neurotransmitter, which is a chemical responsible for moving nerve impulses between neurons. It is found in both the central and sympathetic nervous systems, and it is made by the adrenal gland. Besides acting as a neurotransmitter, norepinephrine also acts as a stress hormone. It has a role to play in a person’s fight-or-flight response, working in conjunction with epinephrine. In this role, it increases a person’s heart rate and blood flow to the muscles; it also stimulates the release of blood sugar and is often compared to adrenaline.

Epinephrine is a hormone that is chemically identical to the adrenaline produced by the body, and the names of the two are often used interchangeably to some extent. When produced naturally by the body, it helps us respond effectively to short-term stress. Epinephrine is also used as a drug to treat cardiac arrest, asthma, and allergic reactions, especially those which could be fatal if left untreated. The first time that epinephrine was produced artificially was in 1895 by a physiologist from Poland, named Napoleon Cybulski.

Dysautonomia on the rise in our decade in my words of wisdom

2010-12-04T12:32:00.000-05:00

I like to share with all my readers on why Dysautonomia is on the rise in our times and, these are my thoughts and my words of wisdom.

Back in the days of World War 1 they called it "Neurasthenia". This was a term used back in the days of destruction. In those times they classified it as a mental disorder and for the insane when in fact, they were not.

If you think about it, what is happening in our times today? We always say, "History repeats itself." True statement. We are very repetitive humans when it comes to life and, who wants power.

We are in the times of destruction. In this decade we have lost many people around the world to Catastrophic happenings. Good example: Hurricane Catrina. It caused much "Mass Destruction" in, New Orleans. Not to forget the Tsunami in Indonesia where, we also lost millions of people. Also, Haiti with the massive earthquake that killed many people as well and, we can't forget, 9/11. The list goes on.

Also, we are in the times of Depression. People can't find work. The unemployment is hurting and,the Government is changing many rules and regulations that people can't phantom. The North Korean Government has caused many upsets on their nuclear power. Not to forget Iran,Iraq, Afghanistan and, our children and families who are our soldiers that are fighting for our lives and, in other countries.

People are stealing and robbing. People are committing suicides and killing the ones they love. It just goes on and on and on. There is just too much negativity around us and the media makes sure they share it with the world that, causes more pain and upsets.

The earth is changing it's course. The weather patterns has changed dramatically and our body's are not adapting quick enough to, these changes.

We are eating foods with so many different chemicals that causes allot of illness's in our body's and yet, doctor's do not have an answer? Remember, they are people too. They learned their knowledge through going to school and being taught the ways it's been taught repetitively and not, new and improved for today's happenings.

Of course we have those who are geniuses and do know allot from within who can help but yet, they are not fully recognized and, they have to take many steps and precautions to get to the right people who will, give them the opportunity to share their work. Not to forget that, "Money is Power". If you don't have the proper finances then, you have no hope nor, power. People are greedy today. It's all about, "Money".

So, if you take everything I just said, it sounds pretty depressing, doesn't it? Yes. It does.

Stress is our # 1 killer. The world is under allot of stress and so is our, earth. Happiness comes from within but, with everything falling apart around us so does happiness.

I am not saying that everyone is depressed but, our children and also adults with Dysautonomia are suffering health wise and, the rise of Dysautonomia is here.

Our children are growing up in the times of pain and destruction. This is why we are suffering. Our bodies is suffering. It is off balanced. The whole Central Nervous System which is functioned with the Autonomic Nervous System is, way off.

The rise for Dysautonomia will continue and we have to share our wisdom so we can find away to survive through all these mishaps. Many people have it and yet they don't know because their doctor's do not know, either.

The word is getting out, some doctor's are finally doing something about it but, it is going at a very, slow rate.

I truly believe we still have faith and we still have hope. Never be a quitter. If you quit, you quit on everyone. Keep strong, have faith and, lets all make a difference. It's time. Till my next blog, xoxo and blessings to you all.

The writer and founder of Dysautonomia Mania Miss Vivian C. Roberson

2010-12-04T11:04:00.000-05:00

Here is a story I will share with all about a nice lady I met through e-mail and on line. She has her experiences with Dysautonomia and she gave me permission to share her story with all of you. Below her story will be her information and her phone number if you like to contact her. Her story inspired me and I hope it will do the same for those who are interested. Enjoy this blog. xoxo Miss Vivian

At the age of 13, Amanda, an aspiring musical theatre actress,
started touring professionally with “The Sound of Music” across the
state of Florida. She attended school part-time. After winning many
awards and training in New York, her future looked bright. She was
accepted into the renowned Dreyfoss School of Fine Arts and chosen
for the first-ever American Idol camp. Her life was just beginning.
By the end of her tour and the last few months of 8th grade
she began to get strange ailments. It started with stomach aches and
severe nausea that caused her to miss school. She underwent numerous
tests, including colonoscopies and MRIs. Nothing could be found.
Then she was afflicted with severe pain in her arms and legs.
Symptoms of weakness, dizziness and heart palpitations followed in
quick succession. Her body pain became intense. She felt like she was going
to pass out at any moment. Every morning she would go to school only to call me within
an hour needing to come home. There were times when she could
barely walk.
My husband and I took her to the doctor almost every other
day. The doctor was perplexed and thought that she had developed
some kind of school phobia. Soon, Amanda couldn’t finish school.
Every day she would tell us she wasn’t afraid of school; that she was just
sick. We didn’t know what to think or do.
Then summer came around. Without school as a possible issue, she
was still almost totally disabled. She could walk a little bit but soon
after standing, she’d have to stop and sit down. She was plagued daily
with such physical pain that even large dosages of Tylenol and other pain
relievers would not put a dent in it. Her stomach pain was so severe that
we took her to the hospital to rule out Appendicitis, cysts, etc. She had this
stomach pain a few times a day on average. Every day felt like an
emergency. The whole summer was a wash. Every day my
goal was just to get her to walk.
When the new school year came around, she started a new school.
She could barely make it through an hour. When she was home,
she complained of the dizziness, chest pain, weakness, etc. Fortunately,
my husband who is a doctor, had a pulse meter in the house and took her
pulse. It was 160. A pulse should never be above 100. He sent us directly
to Cleveland Clinic.
Cleveland Clinic ran a slew of tests but the doctors could not figure
out why her pulse was so high and her blood pressure was so low.
When she lay down on the bed, it was 100 and when she lifted her head
it was 120 and when she stood up it rose to 160. No one had ever seen
anything like it. The doctors sent her via ambulance to Joe DiMaggio
Children’s Hospital. During the ambulance ride her blood pressure
dropped dangerously low.
She was checked in for many nights at Joe DiMaggio but these doctors
also could not figure out what was wrong. They arrived at the diagnosis
that she had a virus even though she had no other symptoms. From lying
down for days, her pulse did change enough to send her home
but it still wasn’t normal.
The next day her pulse was back up so her pediatrician sent her to a
pediatric cardiologist. She could not walk around with her pulse so
dangerously high. We went to the cardiologist whose soon felt he might
know what was going on. He said he would need to do a test in the
hospital to see if his suspicions were correct. Within a day, Amanda
checked into the hospital to do a Tilt Table Test.
During this test, Amanda was strapped to a table lying down with
electrodes attached to her to see what happened to her heart rate when
she was forced to stand up (Amanda would sit or lay down when she
felt weak or dizzy). Within 1-2 minutes of merely standing she totally
passed out. The doctors informed me that during this test some kids had
their hearts actually stop. Luckily for Amanda, hers did not. This test
confirmed the doctor’s suspicions. Amanda was diagnosed with POTS
or Postural Orthostatic Tachycardia, which is a symptom of
a larger problem – Dysautonomia.
Finally, she received a diagnosis! I thought we had found an answer
at last and maybe now she could get fixed. Not so fast, I learned.
This illness is not easily understood or treated. The local doctor followed
the normal protocol of treatment but nothing was working. Amanda had no
improvement nor could she go back to school. We were getting desperate.
Out of desperation and lots of research, my husband contacted the
world’s leading expert, author and researcher for Dysautonomia, Dr.
Blair Grubb, in Toledo, Ohio. He had a 6-month waiting list but out
of professional courtesy, agreed to see Amanda. He diagnosed her with
the same illness. He was wonderful and spent hours with us explaining
how this illness affects many teenagers right after puberty and how its
mechanisms are still unknown. He said only a small amount of people get
helped by the normal protocol and basically, Amanda and about half of those
afflicted by it, grow out of it by the age of 20. He said most of his patients
required wheel chairs and we should be grateful she could even walk .
He would continue to try new treatments, working through our local cardiologist.
Needless to say, when we came home we were baffled. We saw the
world’s leading expert but nothing seemed to help Amanda. From what
the doctor told us and from all the stories we had read online, we could
only treat the symptoms as they appeared.
For about 6 months we were happy to have a diagnosis, but it didn’t help
Amanda. She could not attend school nor continue to be a normal teenager.
Every day she would complain of pain, nausea, dizziness, etc. I actually
started counting her complaints to myself because it was so crazy. She
complained 30-50 times a day and there was nothing anyone could do but
give her hot baths, back rubs and Tylenol. None of this helped her.
She even went to a pain clinic and nothing relieved her pain.
Amanda was obviously on a mental decline. She would ask me, between
sobs of pain, why this was happening to her. I would tell her that there is
a reason for even the bad things we go through in life. I told her that while
she may not understand why she was suffering, she might end up
helping someone else one day – little did we know that she would!
Every day, my only break from the stress would be to walk on the
treadmill. I would research Dysautonomia online for hours on end.
It turns out that there are a few websites dedicated to this condition
because so many teens have it and are desperate to be helped. I could not
stop studying, researching, reading. I was motivated by my own
obsessive/compulsive nature and the desperation of having a daughter in
pain. I printed everything I could print on this illness. I soon had binders
of information which I studied over and over again. Then I came across
an article written by the expert we had seen in Toledo.
It was a research article he had written over 10 years prior. According to
his study, certain antidepressants helped people who had the genetic form of
Dysautonomia. At the time, Amanda was diagnosed with the
Dysautonomia that appears after puberty. None of us had any cause
to believe that it was a genetic form of Dysautonomia (Of course, we later
found out that she indeed had this form). Me being adopted from birth
and not knowing my own genetic history certainly didn’t help either.
Next, I went to one of her local doctors with this research in hand. I asked him if he would consider giving her a high dosage to see if it helped. Basically, she could not get any worse than
she already was. After careful consideration, and after reading the
research , he agreed to try it. Thank God for him.
This is where the story takes an amazing turn. When Amanda got to the high adult level of the medicine, she became symptom free. When I say she got better, I am amazed to testify that
she went from 30-50 complaints a day and basically disabled to symptom-free.
It didn’t happen gradually as one might expect, but immediately.
Every day I would wait for a symptom to come back. Could it be
remission? But time went by and no symptoms returned. I went online to
the Dysautonomia chat lines and was advised that no one ever had a
remission for longer that possibly a week or two. And weeks had gone
by with no problems at all.
Soon Amanda went back to school part-time. She had no complaints.
Then she went full-time. She ended up being involved with the school acting
troupe and practiced for many hours. There still were no symptoms
at all. The doctors were not sure what to think. Was it luck? Did she
just grow out of it suddenly or was it the high dosage of new medicines? No one was sure but we were not about to question it.
Amanda was better and that was all that mattered.
A year went by and I never again visited the websites or let the doctor
in Toledo know how she was “fixed.” I honestly never wanted to think
about those miserable days ever again. Until one day.
One day, over 14 months later, my younger daughter Jessica, who was
12, got very ill. At first we just thought she was getting an ordinary
illness. But soon things changed. Se developed severe headaches and
nausea with severe stomachaches. She ended up in the hospital twice in
a week. We had her tested, thinking it would pass. Then she started to
complain of arm, leg pain, dizziness, and chest pain. The doctors all
said that we should keep an eye out for the same condition Amanda had
but we never dreamed we could have another child with such a rare
ailment. Then one day we checked her pulse. It was all over the place.
She ended up in Miami Children’s Hospital with Gastro paresis (paralyzed
stomach). The doctors advised us that the only children who get this
are those who suffer from diabetes and Dysautonomia. Soon after this
incident, Jessica was also diagnosed with Dysautonomia. She developed
it at almost the exact age as her sister. It turned out it was genetic. She
was also very ill and missed three months of school.
Amanda came to me and asked, “Do you remember how you used to
tell me that I had this illness for a reason? Now Jessica won’t have to
suffer so long like me because we figured out what medicines she
should take.” She was right. Immediately, we put Jessica on the same
medicine as Amanda. Within a few days of taking the higher dosage,
all of her symptoms disappeared. Jessica has now been 3 months
symptom-free.
Now for another interesting part of the story. One may ask how a
stay-at-home mom knew to try the higher dosage of medicine when
the leading hospitals as well as the world’s top expert did not think
to do so. This is a part of the story that I did not think was relevant
until just recently when Jessica got sick and the same medicines
helped her.
It goes back to about three or four years after the birth of Amanda.
I felt very ill. I had severe gastrointestinal issues that left me 30 lbs.
lighter than I am now. I was nauseous every day. I had pain in all of
my extremities. I felt like I was going to pass out many times. I was
tested and hospitalized but nothing was ever found. I was so ill that
I would have a hard time even standing in church. I didn’t know what
was happening. The doctor tried a medicine on me just to see if it would help, not knowing for sure what was wrong.
Soon thereafter my symptoms went away and for years I was fine.
I decided that I was older I could take myself off the
meds (this was all before Amanda ever got sick). The symptoms
all came back. The doctors again couldn’t figure it out. Every other
day I would be on the brink of passing out. I again got hospitalized
for mysterious ailments like severe dehydration or because I felt
like I was going to faint at any moment.
Finally, I realized when I was on the meds I was fine but when I
was off, it was physical chaos. I figured that my body just needed the
medicine at that time. Years later, after Amanda got sick and I started
doing the research, I came across the article written by Dr Grubb
about how certain adult medicines helped some patients. I began to believe
that I was one of them. I remembered my own experience 10 years
earlier and went back to the doctor who treated me and knew
Amanda’s story. He checked my records and he saw that I had come
to see him with the exact complaints that Amanda had experienced.
When I showed him the research from Dr. Grubb, he took a chance
with my genetic theory, and the rest is now history.
Soon after Amanda started taking the same medicines as I did,
Amanda’s symptoms disappeared. I thought it was my theory that
had cured her, but really didn’t think much of it again. She was better
and that was the end of it. Then, boom! My other daughter gets this
dreaded illness. It was no coincidence. I realized that my far-fetched
theory isn’t a theory at all. There is obviously a genetic link here and
that is why the meds worked. They fixed me, Amanda, and Jessica.
The research I read claims that these adult high-level medicines have only worked on genetic forms of Dysautonomia. It also states that it is passed from mother to daughter. This is why they were the key to our cure.
Armed with this information, I next went to the
Genetics doctor. He reviewed the records and examined Jessica and
Amanda. He concluded that there definitely is a genetic link. Unfortunately, the researchers at Vanderbilt University and other research physicists only study this gene. He has recently contacted them with this story so they can possibly consider higher dosages of these medicines for treatment of
this form of Dysautonomia. Presently they are about to place the story in th New England Journal of Medcine. The researchers are hopeful and will be broading thier studies.

My husband asked me why I went to see the genetic doctor when our
children are basically well. There are a few reasons. When Amanda
recovered I never again wanted to revisit this topic because it was
too painful. But when Jessica developed the same condition and was
cured by the same medicines due to Amanda’s experience, I realized
that there really was a reason for Amanda’s travails. I also
feel that the word has to get out to the researchers because if this
information can help one child avoid the suffering and pain, it will be
worth the journey.

Update- Jessica symtpom free 15 months. Amanda over 2 years.
Locallly others have been seeing results from hearing this story.
I also have been contacted as well as consulted with many doctors and hospitals.
Sincerely,

Kelly Ruggiero
President
Children's Dysautonomia Foundation
Mrs. Broward County

HYPERLINK "mailto:Kelly0770@comcast.net" Kelly0770@comcast.net
954 346-7746
561 306-4448
7611 Marblehead Lane Parkland
Florida 33067

Where, who, has the cure for Dysautonomia?

2010-11-22T12:56:00.000-05:00

Is there a cure for Dysautonomia? Well so far all the doctor's who know about Dysautonomia can do is just treat each symptom that arises in your body, and try to make you feel as normal as possible depending upon the health issue you have with your Dysautonomia. Remember, Dysautonomia is not the killer and Dysautonomia effects mostly your Central Nervous System. My son has Dysautonomia and he is a teen going through the changes. It makes it really hard on teens due to the hormonal changes they will go through while they start moving into adolescences to become adults.

It is very hard to find a cure since we are talking about the Autonomic Nervous System which is very wide. Different people have issues with the ANS system and they can vary from many different types of diseases.

I was told from someone very dear to me who knows of someone who has Dysautonomia that they tried some sort of pill that was in some part of Germany, from a doctor there. They do not remember the name of the doctor, what part of Germany, and the name of the Medication. But many years ago, this medication did work and they did not have to take several pills for different symptoms that they were coping with. They felt wonderful. Once they returned to the U.S and ran out of the Medication, it was back to square one.

I will write more about Dysautonomia as I continue to go down this path of being educated and learning just like everyone else who is trying to help and bring awareness. My blog will change from time to time due to new information I receive.

Till next time, Don't give up. Keep researching. There is hope.

More on Dysautonomia

2010-10-22T13:41:00.000-04:00

I'm learning at all times from doctor's, literature, books, other experience people not in the medical field, etc. about Dysautonomia and trying to help others who do not know or, who have it and wants to understand more about this health issue that is, arising in many people everyday. This has to be expressed so that more people can get the right medical treatment from the right doctors who are educated in this field. Dysautonomia is a Autonomic Dysfunction. Basically your "Autonomic Nervous System" is attacked by Dysautonomia.

What is the Autonomic Nervous System? The Autonomic Nervous System is part of the Peripheral Nervous System. The main system of PNS Short for Peripheral Nervous System is to connect the Central Nervous System (CNS) to the limbs and organs. The PNS is functionally as well as structurally divided into the Somatic Nervous System and the ANS. Now what on earth is the Somatic Nervous System? Getting more in depth here because I am going to break it down as much as possible to make you understand.

The Somatic Nervous System is part of the PNS associated with voluntary control of body movements via skeletal muscles and with sensory reception of external stimuli. Which is touch, hearing and site.

The ANS effects heart rates, digestion, respiration rate, salivation, perspiration, diameter of the pupils, micturition (urination), and sexual arousal.

Now the ANS (Autonomic Nervous Systems) has 2 subsystems. They are: Parasympathetic Nervous System and Sympathetic Nervous System. Talking about getting deeper into this huh!? : ) Ok so let's explain the break down of the other two I just mentioned.

Parasympathetic Nervous System: The PSNS short term for Parasympathetic Nervous System is one of the 3 main divisions of the Autonomic Nervous System. The ANS is responsible for regulation of internal organs and glands. The PSNS specifically is responsible for stimulation's of activities that occur when the body is at rest, including salivation, lacrimation, urination, digestion and defecation.

Sympathetic Nervous System (SNS): is one of 3 parts of the ANS. It's general action is to mobilize the body resource under stress; to induce the fight or flight response.

Ok so that was some work. Now the Question is What is Dysautonomia. I'll explain.

What is Dysautonomia?

Dysautonomia refers to a disorder of autonomic nervous system (ANS) function. Most physicians view dysautonomia in terms of failure of the sympathetic or parasympathetic components of the ANS, but dysautonomia involving excessive ANS activities also can occur. Dysautonomia can be local, as in reflex sympathetic dystrophy, or generalized, as in pure autonomic failure. It can be acute and reversible, as in Guillain-Barre syndrome, or chronic and progressive. Several common conditions such as diabetes and alcoholism can include dysautonomia. Dysautonomia also can occur as a primary condition or in association with degenerative neurological diseases such as Parkinson's disease. Other diseases with generalized, primary dysautonomia include multiple system atrophy and familial dysautonomia. Hallmarks of generalized dysautonomia due to sympathetic failure are impotence (in men) and a fall in blood pressure during standing (orthostatic hypotension). Excessive sympathetic activity can present as hypertension or a rapid pulse rate.

Is there any treatment?

There is no cure for dysautonomia. Secondary forms may improve with treatment of the underlying disease. In many cases treatment of primary dysautonomia is symptomatic and supportive. Measures to combat orthostatic hypotension include elevation of the head of the bed, frequent small meals, a high-salt diet, and drugs such as fludrocortisone, midodrine, and ephedrine.

In Conclusion:
The outlook for patients with dysautonomia depends on the particular diagnostic category. Patients with chronic, progressive, generalized dysautonomia in the setting of central nervous system degeneration have a generally poor long-term prognosis. Death can occur from pneumonia, acute respiratory failure, or sudden cardiopulmonary arrest in such patients.

Hopefully this helped and we will continue to find a cure for Dysautonomia one way or another. In some other cases if you get Lyme Disease, you get Dysautonomia. Also, there are cases that you are born with this disorder(not to be mistaken with Familial Dysautonomia which is a Jewish disease) and, it depends how effective it is to each person from generation to generation. Also, Virus's can set off Dysautonomia in people. This is why it is so hard to figure this nightmare of this disorder because of many ways you can get it.

Just don't give up. Continue your research and continue to find the right doctor's. There is always hope. Never quit. With all of us trying, we will succeed.

Till my next blog, I hope this helped and I will continue to write from time to time with all the information I find.

Much blessing and light.
Miss Vivian C. Roberson