Dysautonomia Education

[Guest tearose]

The ANSAR test is not worth doing. It is a waste of our limited time and money to get information we already KNOW.

It tests heart rate variability and ANS sensitivity and we all know we have this. The treatment plan is oversimplified.

Here is a link to a typical treatment plan:

http://www.ans-hrv.com/TherapyOptionsH+_Alternative.pdf

We have the best minds and hearts in the world studying Dysautonomia and we all have tried many if not most things SEVERAL times.

I believe some of the "damage" to our ANS can be permanent and no amount of drugs, exercise, diet, supplements or even prayer can change it.

I have come to this prayerful conclusion over years of trying everything several times myself and refuse to allow some undisclosed, unwilling to share newbie make anyone feel like "they" have the magic answer and we are all innocent dupes.

[Cobramarty]

Dysautonomia(DysA) is an imbalance of the ANS. The sympathetic(SNS) and parasympathetic(PNS) nervous systems are out of balance. The sns and pns can be measured and followed. DysA is a central/core disorder with many variable peripheral signs and symptoms. Most current practitioners treat the peripheral and not the central core problem. So if one complains of tachycardia they get a peripheral acting B blocker, hypotension- florinef, anxiety- benzos, depression-antidepressant, joint/muscle pains- pain meds, lyrica, nerve complaints- neurontin, elevated/fluctating glucose levels- insulin, and the list goes on. Are any or these drugs treating the actual problem- DysA or are they just treating a complaint. If you are taking a drug and you still are having symptoms and it is not treating the underlying problem, Why keep taking it? Oh yeah the doctor will just up the dose because the drug is not working and now you get a whole new list of SE and complaints.

We treat chronic diseases very poorly for the most part. Treatment from the outside, peripherally is not the answer.

[Cobramarty]

Tearose, sorry to hear you disappointment. What test is used to follow ANS dysfunction? The TTT? What test does your doctor use to follow your DysA dysfuntion.

The TTT is in your words 'not worth doing. It is a waste of our limited time and money". What does it measure? Can it follow a disease recovery or progression?

I resent your comment "undisclosed, unwilling to share newbie". Be nice, play nice. I have no ax to grind here.

[firewatcher]

Marty,

From your own blog, you are either a PA or want to be a PA. You also seem to really be into cars and other "adrenaline pumping" machines, which I find odd since most dysautonomiacs tend to shy away from overstimulation. I appreciate your enthusiastic stance, but you have come to a forum of support for those who often have not and may not ever find absolute healing. There is too much that is not yet understood about neurotransmitters and the function of the ANS. Most of us have had real struggles with doctors who were absolutely certain that we had ___________, and if we just ___________, it would go away. Many of us have waited years for an explanation of our symptoms, only to find this vague syndrome of ANS dysfunction.

If you are now CURED, great. I am happy for you. We understand your frustration with Western medicine, but many of us have tried Eastern medicine, Holistic medicine, dietary changes and various other claims in a search for normalcy. No one is objecting to your approach, it is simply your tone. Several times, there have been posters whom have joined to boards to tout a cure or sell a product; they share little about themselves and claim to know far more than researchers and healers whom have delved into the inner workings of the ANS for longer than some of us have been alive.

Tell us YOUR story, your symptoms, how you were diagnosed and what helps YOU. That way you can help others who are in similar situations.

[Guest tearose]

Response:

I don't have to "play nice"...I am nice.

I just share it as I see it...

We are fortunate to all have our own experiences and I was sharing from mine.

I wish you and all only the best!

[Cobramarty]

Board Certified Internest, Board certified emergency medicine physician not PA or want to be anything, with over 20 years of experience. I have many interests and am particularly interested in DysA. I have studied and read most everything out there about DysA. I work closely with another cardiologist physician who specializes in ANS dysfunction, treatment and research. He has 10 years and over 5,000 patients experience in DysA. I have nothing to sell, nothing to peddle. No hidden agenda. I didn't see an area for biography in my profile here. I hope this answers some of your doubts.

[Cobramarty]

Thank you Tearose. When one is enthusiastic about a subject or topic, it is hard to get it out sometimes.

[sue1234]

CM, stick around and discuss with us all of our theories, questions, etc. I know I am always wondering about off-the-wall stuff, as a few others also do. It helps to 'hash out" these theories and how they could/could not relate to dys.

I understand the ANS/PNS being the culprit to alot of our symptoms, and am always desperately trying to figure out what initially happened in my body four years ago to set it off.

[Cobramarty]

Sue1234, look over at the start of this thread, do you answer yes to any?

I learn everyday and usually learn the most from my patients. I am grateful for having everyone as my teacher. In fact here i read about turmeric. Very interesting. I wonder why certain cultures are resistant to certain diseases and when they move say to the US they get these diseases. I want to stop at my local ethnic store for some.

[potsgirl]

Firewatcher, I'm with you. I want to know about CM's illness and how he was diagnosed and what his credentials are. He seems to be trying HARD to ignore sharing his own personal information. That's NOT what a forum is about!

[potsgirl]

Thank you!

[sue1234]

CM, of course, I answer yes to 75% of the symptoms and experiences, as most of us would here. I hope more doctors learn from their patients, as not all patients fit a "one size fits all" treatment plan, as most of us here show. What works for some, exacerbates or doesn't help for others. I am one of those.

[firewatcher]

Doctor Marty,

Sorry, but no, I still have doubts. Heck I doubt my own doctors some of the time. I have learned that after seeing many "learned" doctors with credentials and experience much prettier than yours whom were all wrong. Many of us have seen eminent cardiologists who don't know beans about POTS or Dysautonomia! Welcome to the boards, I look forward to your posts, but forgive me if I argue with you...I am know to do that. Excess norepi makes me grumpy.

[Noreen]

Thank you for clarifying. I may be overly sensitive on the issue as my friend has done more for parents of special health care needs children in this country then anyone will ever know and never deserved (not that anyone does) to be hit with finding a diagnosis for her daughter when she became ill at 23.

While writing a paper for my Leadership class for my MPH, I read a book entitled The Art of Possibility . One of the key points of this book is Rule Number 6 - 'Don't Take Yourself So Seriously' - there are no other rules. I, of course, would add the Golden Rule, but use that as my radar when evaluating professionals, politicians, and the like. If you take yourself too seriously, you run into the likelihood that you will not hear the other person or the other side of an argument.

I, for one, appreciate that you share our frustration with the medical community when they do not want to or are incapable of, whether by training or personality, truly listening to their patients. One point that you may not be aware is that women are still treated differently than men when presenting with the same symptoms. I hope the training is changing for doctors but the last time I researched this, probably 7 years ago now, it did not matter whether the doctor was male or female as they were taught the same way to thing/evaluate female patients. Many of us, at least those above 45, have dealt with doctors who treated us like it was all stress/hormones -choose one that time of month,pregnancy, post-pregnancy,perimenopause,menopause, yada, yada. Educating ourselves is about the only tool we have in our arsenal. Now having been brushed off and patted on the head for years, we just don't take kindly to comments that we haven't been doing all we could do.

Please share what info you have but when you do please know that there are many professionals and former professionals who like to look at the original work so if you would be so kind as to include footnotes or other references so we could educate ourselves further from the original work, that would be much appreciated.

Noreen

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.

[Noreen]

Hello CM-

I answered you other post before I got to this one in which you identify yourself as a physician. I think it is great that you are continuing to educate yourself as a physician.

My grandfather was a MD. He became a DO and OD by studying at home back in the day when you could do that. The osteopathy and studying a bit with Sister Kenny was by way of trying to help his polio patients. He used to brew up his own Arnica oil to help with the massage. What is old is new - after I got fibro from a car accident 20 yrs ago (argue the dx later), I've never been without Arnica ointment in a tube - it is wonderful.

Board Certified Internest, Board certified emergency medicine physician not PA or want to be anything, with over 20 years of experience. I have many interests and am particularly interested in DysA. I have studied and read most everything out there about DysA. I work closely with another cardiologist physician who specializes in ANS dysfunction, treatment and research. He has 10 years and over 5,000 patients experience in DysA. I have nothing to sell, nothing to peddle. No hidden agenda. I didn't see an area for biography in my profile here. I hope this answers some of your doubts.

[erik]

Just wondering if some product or service is being sold or promoted here???

[juliegee]

Just wondering if some product or service is being sold or promoted here???

Yeppers. If you click on Dr. Marty's leg cramp blog spot, and want to read more, you are INVITED to make a donation.

Hmmmmmmm

[Guest tearose]

I have nothing good to say so I'm not going to say anything.

[Cobramarty]

Not by me. If you would like to buy me a cup of coffee, thank you. But for you MM it is all free. Interesting that not a single donation in the month it was up. It's not about the money or any sale.

[Michelle Sawicki]

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