Ansar Autonomic Nervous System Testing

[janetbrn]

Hello. I have been checking in on this message board ever since I was diagnosed with POTS by tilt table testing in 2002. A lot has happened in 4 years and I finally have something I am very compelled to share. I applaud everyone who has researched POTS on this site. I gather from reading your experiences that many of you have battled the system and have fought for the medical community to respond to cries of help from those who suffer with or care for those who suffer with autonomic nervous system disorders. It is through your continued efforts that these dysfunctions come to the attention of medical practitioners who will care to learn more about how to help us. I am both a Registered Nurse and a patient and I know some of what you have been through.

I want everyone to know that there is now technology that can identify and test both sympathetic and parasympathetic branches of the autonomic nervous system. This test is called ANSAR (Autonomic Nervous System and Respiration). It is patented MIT and Harvard technology that was discovered 25 years ago, but it is just since 2002 that most insurance companies will pay for it. It was not until 4 years after my diagnosis of autonomic nervous system dysfunction that a new primary doctor recommended a cardiologist who performed this test in his office. It only took about 15 minutes to instruct me to do 2 breathing exercises and stand for 5 minutes. They measured my ECG and BP while the computer measured my heart rate variability with my respiratory rate. My doctor explained that each of these exercises, or challenges, simulated all of the different activities our autonomic nervous system needs to respond to every day. Of course, the results of my first test were not exactly normal, but after changes in my medication, I now show only slight sympathetic withdrawal upon standing. Needless to say, I feel a lot better. ANSAR didn?t cure me, but it did get my doctor on the right track.

I wondered why I never heard of ANSAR before so I researched the company (www.ans-hrv.com) and found that their home base was just a few miles away in Philadelphia. I made it my business to find out who these people are and what they were doing. I found at ANSAR, some of the most hard working and compassionate people I have ever met. They indeed have biotechnology that is about to break into the main stream medical community. They truly care about helping the people who are affected by ANS dysfunction. This includes not only individuals with primary autonomic dysfunction, but diabetics, hypertensives as well as those with sleep difficulties, chronic pain, migraines, Parkinson?s and so on.

Unfortunately, your doctor probably never heard of ANSAR. There are only about 500 machines being used across the US by Internists, Family Physicians, Cardiologists, Neurologists and others. The ANSAR people cannot come out and test you individually due to HIPAA regulations; however, it is possible that ANSAR can arrange to test you in your doctor?s office. I got to know the ANSAR folks pretty well and they would do everything possible to accomplish this. They have reps in most areas of the US. They need more doctors to know about ANSAR and so do we.

If you would like more information, feel free to email or PM me.

Bless all of you dealing with POTS. Hopefully it won?t be long before the average doctor knows it?s not just something to bang around in the kitchen.

Janet Brown, RN, BSN

Edited June 14, 2006 by MightyMouse

[Sophia3]

I checked the site and never heard of the doctors mentioned. I guess I was looking for Goldstein, Grubb, Low, etc.

Is this just a way to get answers in a nutshell in a more high tech fashion?

I have never heard of this gizmo, if you will, being used?

Though we are all familiar with breathing tests or Valsava maneuvers. I would be curious if anybody who has gone to Vandy lately or Mayo has heard of this Ansar device.

Will be curious to see if others here have seen this machine or used it.

[janetbrn]

Sophia,

I think they have one at the Cleveland Clinic. I believe it is the diabetic community who are being tested the most because of diabetic autoneuropathy and cardiac autoneuropathy. Doctors who focus on the autonomic nervous system are few and far between, but individuals who suffer from autonomic nervous system dysfunction are everywhere. Doctors who think holistically are rare. I don?t just mean doctors who think of treatment options other than meds, I mean docs who understand that the brain and organs are connected by the nervous system. When doctors start using this technology to objectively measure the results of what they are prescribing, they will prescribe more effectively. I am sure of it. I am the proof.

My doctor is a cardiologist in the Philadelphia area. I didn?t get his permission to post his name all over the place but if you email me, I will be happy to give you his name and number. I am just hoping that more doctors will start using it soon.

Janet

[Sophia3]

Thanksyou Janet for explaining.

I currently have a great doc and got him about 10 years ago...or maybe 8.

He is an endocrinologist and on first visit did a poor man's tilt table test and thought ANS dysfunction...I'd had CFS for years but the CFS doc would NOT give me a tilt even after it was written about in CFIDS Chronicle...so I found my current doc via a letter writing campaign explaining my problems in a nutshell.

Yes we need many more docs interested in the ANS.

p.s. He also DOES EMAIL!!!!!!!!!!!!!!!! Gotta love a doctor who does that. Beats jumping thru hoops of a front office!

[janetbrn]

Sophia,

Let your doc know that ANSAR will make the effort to come to him. They don't buy lunch but they will do testing and let the doctor bill the insurance company for it. Something new seems tough for doctors to even consider. It is often the squeaky wheel patients who can initiate change. I want to see the change that ANSAR can make. As a nurse, I could never understand why you wouldn't do everything you can to help a patient get better. Doctors often have difficulty listening to the patient. So the patient has to get a little loud before they are heard.

I had the tilt in 2002. It was positively torture. I had no bp after 17 minutes. The ANSAR test is very tolerable. From what I understand, only ANSAR can measure both the sympathetic and parasympathetic nervous system, thus giving you the sympatho-vagal balance.

Feel free to email me.

Janet

[futurehope]

Hi,

Thank you for sharing. I am curious, What medicines are you currently taking to help with your nervous system difficulties?

Did you have to "retake" the Ansar test to prove that the current medicine regimen worked, or was it just subjective?

Do you have POTS or orthostatic intolerance? What symptoms have improved on the meds?

Thanks in advance.

[mom4cem]

Janet,

Funny you should bring this up. A friend from another site had given me a number of a Dr. in PA who had this ANS machine. I called the office and they sent me a brochure on the ANSAR. This was just about 3 weeks ago. This particular dr. is not a cardio, a primary physcian I believe.

[corina]

janet,

thank you so much for sharing this. it's very interesting and i am glad that you have found such helpful people. my question is this: do you know whether they have ansar machines in europe (or, more specific, maybe even in the netherlands)?

again, thank you for your information.

corina

[janetbrn]

Hi everyone

My biggest symptom was chronic fatigue. I also got a lot of headaches. I had a real tough time with showers, I would need a nap every time I took one. I had a weird high pitched beep-iddy-beep in my left ear.

My doctor started me on midodrine 3 times a day. Then added coreg twice a day (I am told that ANSAR's research is showing that centrally acting bb's work better than the peripheral acting ones). Then I started elavil 10 mgs at night. The beeping in my left ear went away the day I started the coreg. That sound had been bothering me constantly for years and now it is just gone. My energy level is almost what I would consider normal. I am sleeping through the night and I am not taking naps any more. I still make sure I schedule 9 hours for sleep at night. Oh and the headaches are pretty much history. I used to take a (very expensive) relpax about 2 X a week. I haven't taken one in 6 weeks now.

ANSAR does have a number of machines in PA and NY. But there are not enough out there yet to make this information common knowledge. I think that part is up to us. Corina, I don't think ANSAR has hit Europe yet. The ANSAR people had to do a lot of work to make this testing reimbursable through traditional insurance. That part is going very well. ANSAR is non-invasive and cost effective compared to tilt testing. Insurance companies are starting to increase reimbursements so that practitioners pick ANSAR testing first before ordering tilt testing, holter monitoring etc. There are quite a few machines in Peurto Rico (their insurance is the same as USA) and 1 in Brazil.

I am hoping that the consumers will start driving the demand for ANSAR. I have alway had that "I want to be a nurse so I can help people" mentality. I don't do hands on nursing care anymore. It is too physically demanding for me. This is now my way of trying to help.

Janet

[futurehope]

Janet,

Thank you for your rapid answers. I have some more questions, if you don't mind.

Did the actual test measure the entire ANS or only the part associated with the heart? Would somebody be able to extrapolate from the results and KNOW that the digestive system is affected, for instance?

What diagnosis were you given? (This question is important for those trying to get SSDI and trying to prove a disability.)

Was the doctor who administered the test the one who did the interpreting of results? Did s/he need training?

Did the actual test results POINT the doctor to the correct medicine? (This question is very important to me as I would like doctors to get HELP in knowing what to do for us.)

Or, did you have to go through a period of trial and error to determine just what you needed?

Where can one find a doctor who can administer and interpret this test for us?

Thanks again.

[janetbrn]

Did the actual test measure the entire ANS or only the part associated with the heart? Would somebody be able to extrapolate from the results and KNOW that the digestive system is affected, for instance?

The test actually gives a measurement of sympathetic and parasympathetic response at baseline, to deep breathing, valsalva and standing. The software uses spectral analysis, measuring heart rate variability with the respiratory rate. The patent that ANSAR holds has to do with using respiratory rate to identify the parasympathetics. Everyone has an ANS and if it doesn't work properly, eventually symptoms will ensue. The sympathetics are responsible for your fight or fight response. So if sympathetics are too high, constipation can occur. If your parasympathetics are in the drivers seat when they are not supposed to be, diarhea can be a result. Every organ can be affected by imbalance. The heart being the most devastating. With orthostatis, the vascular system is not responding correctly to the sympathetic challange of standing, so the heart works too hard to try to get that blood up to your brain...tachycardia.

What diagnosis were you given? (This question is important for those trying to get SSDI and trying to prove a disability.)

ANSAR testing suggest chronic autonomic dysfunction. It will identify if your test is consistant with POTS. It can also detect if you are consistant with CAN (cardiac autoneuropathy). I'm not sure if anyone has used it to prove disablility, but I will try to find out.

Was the doctor who administered the test the one who did the interpreting of results? Did s/he need training?

My doctor has been using ANSAR for 5 years so he is good at interpreting thet test. ANSAR does train the docs and the techs who do the test. The software does make it pretty easy. Red=sympathetic Blue=parasympathetic. Doctors usually get pretty good at it after a dozen or so tests but ANSAR can coach them through

Did the actual test results POINT the doctor to the correct medicine? (This question is very important to me as I would like doctors to get HELP in knowing what to do for us.)

The software does recommend treatment based on the information that is coming back so far. The docs are trained to use the drugs andregenic agonsts, andregenic antagonists, cholinergic agonists and cholinergic antagonists to balance the ANS like a see saw. ANSAR shows which way you whether you are up or down on the see saw. If one side is up, use a drug that will either push it down, or pull up the side that is too far down. Recommendations often include Coreg. It is centrally acting and is showing better results.

Or, did you have to go through a period of trial and error to determine just what you needed?

I got lucky. I did a lot of trial and error before I was tested. Some of the errors included amphetamine and provigal. I had some luck with menstrual suppression. This last trio of drugs fine tuned me to almost normal.

Where can one find a doctor who can administer and interpret this test for us?

ANSAR did give me a list of installed units. However, I am serious about trying to get your doctor to use it. The doctors who are using it so far find it easy to interpret and unless they are a teeny tiny practice they it will pay for itself and then some.

[Poohbear]

This doesn't sound like anything new to me.

It sounds like the same testing and equipment that Mayo, Vandy, Hopkins have been using for years.

[wareagle]

I must say I'm a bit confused on how this "new" testing is better than a regular TTT? I did some research on the ANSAR test and it seems that although it may have some benefits in dx. other disorders there is no specific criteria for dx. POTS and other forms of dysautonomia.

For instance...Dr. Grubb states that to be dx. with POTS a person's Heart rate will increase by 30 bpm. and/or go to 120 bpm. within 10 minutes of being upright....Well this ANSAR test only has you standing for 5 minutes and some people won't demonstrate OI within that amount of time. Also..the people that are being sent to administer these test aren't trained to recognize POTS specifically and are unaware of the possible problems during this test. You know there are people who will pass out in less than 5 minutes upon standing or have some type of crisis... what happens then? At leaste with a TTT you are strapped to the table and the people administering the test know what to expect and how to take care of the patient.

And I may be wrong..but I was under the impression that during a TTT both your sympathetic and parasympathetic NS WERE seperated out using different techniques. Please don't get me wrong...I am all for new technology and better dx. tests...and I can understand your enthusiasm..but I would caution you to really investigate this before recommending it to people here. As far as I can tell...most everyone here has been dx. with POTS via. a TTT already...and I don't believe that being "retested" by this ANSAR is going to change anything in our treatment.

[Sophia3]

wareagle..

True..there are already tests to check sym and paras..so I am now reading that all these testing to determine ANS are being done in more detail at Vandy, etc, as poohbear stated. We need all the time and details we can get.

Hand in ice water, Valsalva maneuvers,etc

[janetbrn]

I am enjoying all of this discussion today. I had a positive tilt in 2002. I read the print out and it diagnosed with POTS and the recommendation indicated Adderall. It didn't help. The tilt was pretty much torture in my book and I have been afraid that someone would make me do it again. If I had to do it over again I would have skipped the tilt and did the ANSAR. How many of us our tilting ourselves on a daily basis? Instead we get out of bed (on a good day), sit stand, react to stress, go to the bathroom etc... I guess I have my personal experience to go with. The test recommended midodrine, coreg and elavil and it worked. When they tilt you in an EPS lab and you start having a positive response, they keep going until you have no bp. No heart rate is even better. I always said that those EPS guys aren't happy unless they kill you. Yes they are trained to bring you back. But it sure isn't a fun experience. I would hope that a trained tech in a doctor's office would know what to do if someone faints. And then it is documented. If you are not tolerating an ANSAR test you can stop. Most of us know our limits. When we are instructed to do a valsalva manuveur, do we actually poop in the chair...not usually. You can also extend the test in 30 second intervals.

I don't know if ANSAR is "better" than TTT. I know it is tolerated a lot easier. I believe that the unique part is that hrv is measured With the resp rate and this is what other test do not do. I don't fully understand the mathmatics of why that is necessary. With each breath, the hr is supposed to increase with inspiration and decrease with expiration by a certain amount. This can be measured.

Janet

[wareagle]

I've had 3 TTT and NEVER have the people administering it kept my upright until my bp and heart rate disappeared!!! I have always been in control of when I come down from the tilt!

PLEASE do not misrepresent what happens during a tilt table test...at this time it is the "gold standard" in dx. dysautonomia..there are a lot of people who come to this site to get information on testing and treatment and when you say horrible (and inaccurate) things like that you may discourage them from getting the testing and ultimately the answers they despirately need.

[morgan617]

I think I'm a little leery of this too. There was a study at NIH a few years ago using these very techniques for research. I applied, but the test was done already.

So this is not something I'm unfamiliar with.

I was a nurse too and My tilt was no fun, but no where near as bad as you are implying. I have a very good friend who does tilts and they NEVER have allowed someone to arrest. it happens occasionally with any test that's cardiac. if you have cardiac problems the risk is there.

But she would be appalled to think someone was saying she tried to get people into asystole!!! And that was a good thing. Good grief.

I don't imagine these tests as not making you symptomatic. If they trigger your sympathetic or para sympathetic systems, you are going to feel it. Period. No less or more than a tilt. Just having to go to the bathroom makes me symptomatic, so even the act of pretending I am going, is going to do the same thing. I don't have to poop in a chair to feel the effects of having to poop.

I'm all for new research, but my pcp IS in a practice by himself and I would not ask him to buy a little machine that turns red or blue for what amounts to I am sure a whole lotta money, from a company out there to sell these machines.

I have been on every drug you mentioned. The elavil made me so sick I had to go on verapamil to slow my heart rate down, coreg made me even sicker, and my normal bp is about 200/120, so midrodine is out of the question.

I am on a low dose of clonidine, which, although it gives me side effects, does help. And I didn't need the ansar for my doctor to try it.

Sorry, I'm just not convinced here--i agree with the others that some things said will be very frightening to new people...morgan

[janetbrn]

Abstract reference to orthostatic intolerance and POTS.

http://www.ans-hrv.com/2006abstracts/AHA06AbtrSW1.pdf

I guess I just had a worse than usual response to the tilt. I had a lot of symptoms but passing out was not one of them. After 4-5 minutes I felt like dying and couldn't do anything about it. I wanted to go down so bad I think a begged a little.

I also sent many patients to EPS lab. It was their job to induce lethal arrythmias. They were good at it and always prepared for the worst. When I had my tilt, the nurse mentioned that she had to stop bc I am thin and was slipping throught the straps when my bp hit 0. She told me she would have pushed it longer if she could to get to true bradycardia. My hr only went as low as 70 (low for me at the time). I'm not sure that she meant to induce asystole. I had that experience of sending many patients to the EP lab. I am glad they are there to do what they do but it always gave me the willies.

[corina]

i think the point is, that it should be easier for doctors to find out if there possibly is oi in a patient (let's call it dysautonomia). that would be just great, considering the struggle we all had getting diagnosed with this. if this could be done easily, that would be great.

i am sure that there are a lot of people who can't get a diagnosis because doctors just don't know of the existance (spelling?) of dysautonomia. so i think we need to educate the doctors at first. spreading the dinet brochure helps, but i just know of a few doctors in my country who know that dysautonomia exists. and they are specialists. the others JUST DON"T KNOW and , maybe even more important DON"T LEARN. once doctors know of the existance, a machine like ansar could be very helpful, as does the ttt.

the ttt made me feel very sick and i had three of them, two saying probably pots and the last definately pots. if i had to do them again, sick or not, i would. i want our docs to learn what's happening to our bodies. and everyone who needs a ttt: you might feel really sick but you DON'T DIE OF IT.

corina

[goldicedance]

I understand that this machine is no great shakes--particularly when it is in the hands of a practitioner who knows very little about the autonomic nervous system. The machine spits out some type of report that the doctor then tries to interpret and bill for. There is no substitution for the TTT and other ANS tests. If this machine was so good, we would find it at many more leading hospitals. I am also suspicious of a doctor who touts the machine given that he/she is probably being paid for his "advertizing." Goldie

[Sophia3]

Goldie

GREAT POINT about 'interpretation of test results.'

Attending MY ttt was a dumb young doc associate of my then Cardio. This idiot said my TTT was INCONCLUSIVE.

I went home depressed, dejected and felt like leaping off a bridge. ESPECIALLY since I had gotten so ill during tilt, nausea, racing heart, hot flashes, visual dimming, etc.

ONLY to see my "real doc" in the office a week or so later to be told the tilt CONFIRMED his and my endocrinologist suspicions....ANS DYSFUNCTION!!

so, it has to be an all around decision by doctors that ALREADY KNOW about ANS problems so they "know" what to look for.... Then again, we have ALL heard of things being missed on X-rays and MRI's and stuff or conflicting opinions.

STILL, if ANS could be so quickly and easily dx, I would think Grubb would use it...among others. Then again, lots of folks get all tests available and it does NOT fix the med route which is all a crapshoot anyway.

[Dizzy Dame]

Janet,

I'm excited that you found a test that helped to diagnose you, but I find it very troubling that you're poo-pooing the TTT. As others have said, many people come to this site to get answers, and I wouldn't want anyone to pass up on getting a Tilt Table Test based on what you've said.

I've had four TTTs and they were uncomfortable, but I didn't die. Each time the doctors told me to notify them if I just couldn't handle my symptoms anymore, and the last Tilt Table Test I had, I asked to end the test early because I started vomiting (if I stand long enough, I start to throw up).

I'm glad to hear the ANSAR may be a viable alternative to TTT's but, TTT's are (as others have said) the gold standard for diagnosing dysautonomias at the moment. I'd hate to think you'd encourage anyone to refuse that avenue of diagnosis.

[Guest Julia59]

In my opinion this ANSAR test could be another choice of testing given to patients, but the TTT is the most common, then other forms of testing usually follow---i.e. valsalva manuever---ect........

The only ANS test I had was the TTT---and most recently I asked to have my catecholamines tested to see if I have the hyper-adrengic form of POTS. I was told three times that this was the type of POTS I had by the same person----so I asked to have the blood work done. Norepinephrine, epinephrine, were in the normal range, but the dopamine levels were high. I passed the TTT---but I was on my beta blockers. My HR went up 30 BPM & BP lowered considerably---but it took longer. However, there are times it goes over 100bpm even on my beta blockers---in a sitting position, and my BP gets really low. I was still diagnosed with POTS by Dr. Grubb, and a number of other problems from other physicians..........

Perhaps this newer ANSAR testing could compliment the current more familiar tests.

Julie :0)

[janetbrn]

I believe ANSAR is an adjunct to the tilt. The tilt being the superior test. I think ANSAR is important because ANS dysfunction doesn't happen over night. What if ANS assessment was more matter of fact and available at the first sign of problems? Or even before symptoms appear. What if, in generation or so, these dysfunctions are caught before unrepairable damage occurs?

It hurts me to hear about POTS patients who have tried EVERYTHING and nothing is working. I thought I was finished (washed up) and considered how I would deal with a debilitating syndrome that was only going to get worse. But I wouldn't give up. I had some success with the cranial-sacral stuff, then more improvement with menstrual suppression. I'm one of the lucky ones because now the medications are working. POTS didn't happen over night and it has been a progression (with some set backs) to getting better.

Please, no one be discouraged from getting a tilt. It is currently the best test that will give a definative diagnosis. The fact that I had a positive test made a difference to some of the doctors I dealt with. I could think of a couple who didn't give a #@$. I looked fine and was a big pain because I wouldn't stop asking questions.

Anyway, my husband cooked me dinner so I'll just have to figure out how to change the world tomorrow. Bless you all.

[Jacquie802]

I have had a TTT 4 times, 5 if you count the tilt I had for the research study. I didn't find it to be real horrible. I'd rather stick to the TTT, since it is the Gold Standard right now for diagnosing POTS. Also, I feel better being with doctors/technicians who deal with this type of testing alot.