janetbrn

No, noone here wants to cry about it. That is why your here. You're either trying to help yourself or help someone else. Both are important. About that control thing??? My opinion is that only God is in control of that. I think some people get better, some worse and some stay just about the same. About 3 years ago, I had all but given up. I prepared my kids for the worst and started shopping for a freezer so I could buy enough frozen dinners so my kids wouldn't starve. Then the idea to try the menstrual suppression popped in my head. It worked pretty well. I had 2 good months for every bad one. I felt alive enough to go to the osteopath for adjustments 1x a month. The last addition of meds seemed to fine tune me. My doc will try to wean them in 6 months or so. He told me that the meds would "reboot my hard drive". I suppose he thinks there is still life in this old "motherboard". We will see how it works.

hcpc_code_lookup hcpc_code_id hcpc_code_version long_description short_description last_updated 95921 12 TESTING OF AUTONOMIC NERVOUS SYSTEM FUNCTION; CARDIOVAGAL INNERVATION (PARASYMPATHETIC FUNCTION), INCLUDING TWO OR MORE OF THE FOLLOWING: HEART RATE RESPONSE TO DEEP BREATHING WITH RECORDED R-R INTERVAL, VALSALVA RATIO, AND 30:15 RATIO hcpc_code_lookup hcpc_code_id hcpc_code_version long_description short_description last_updated 95922 17 TESTING OF AUTONOMIC NERVOUS SYSTEM FUNCTION; VASOMOTOR ADRENERGIC INNERVATION (SYMPATHETIC ADRENERGIC FUNCTION), INCLUDING BEAT-TO-BEAT BLOOD PRESSURE AND R-R INTERVAL CHANGES DURING VALSALVA MANEUVER Autonomic nerv function test Well, I had to check the codes as fast as I could. I copied and pasted the info from the CMS government site with all Medicare info. I'm not sure how funky it will look. I can't find anything about a-lines in there. Probably doctors need to use autonomic dysfunction as the primary icd9 code to get paid. My test sure didn't involve anything invasive. And the 2 codes combined only paid about $100. I don't think $50 would cover an a-line. Probably, no one is billing with, "I think my patient is fine, I just want to check". That's because it is reverse to how medicine is done, in the US anyway, and they would not get paid. What still puzzles me is that I am not getting an overwhelming yahoo to the idea of getting to change the way doctors as a whole look at the ans. The last person who posted was right. Med schools are doing great if the skim over it. But isn't it the people who have an ailment of some kind who yell and scream and get funding for research, the ones who change how it is approached? That is why I think it will be diabetics who get ANS testing to be better understood. Their ans function gets pretty messed up from thier disease. If they find out that the decline can be monitored and treated to help prevent the nerves that control the heart from dying...watch out...they will march on Washington. I don't want to cry about the year I spent on the couch, I want to help prevent it for the next guy. I guess I'm one of the ones who believes everything happens for a reason. I see you all here, helping and supporting one another. You are all using your experiences to guide eachother and help eachother from hitting bottom. Sometimes it is the very act of reaching out that keeps you going. I thought I would have shut up by now. Feel free to tell me to shut up if I am droning on and on.

ps. there is no official diagnosis called "pre-pots". It was just a way to illustrate that there is often a progression to this disease. You go out to start your car one day and the battery is dead. There was no official "pre-dead battery", but the battery was not fine the day before.

Here I am again. I think I do want to get involved with the ANSAR company. Even though I will come across skepticism, my enthusiasm is not wavering too much. Every experience I have had so far tells me that this is a very hopefull and exciting tool. My experience aside (which was a very good one), I am now hearing people talk about the ans in the context in which it belongs. Like I said before, there is no magic cure. People with advanced POTS may not be affected much by this technology. And, each piece of information that is derived from the test has been available for many years done through several test over I don't know how much time. What is different is that it is now packaged in one piece of software that will do all of the calculations to measure sympathetics and parasympathetics, independently, at the same time. Anyone with ans dysfunction should have an ans specialist. Just how many never get to find that out? That is why I am saying that ans assessment and evaluation should be more commonplace. Severe dysfunction does not USUALY happen over night. Why do people have to get soooo sick before they get to find out that there is something going wrong with the ans. As far as snake oil. Like I said, there is no promise for cures coming from me. I just hope that, just maybe, somehow, by the grace of God, I can invoke some change in thinking. A cardiologist told me once that "doctors just don't care about the autonomic nervous system". Why not? As far as the insurance companies go, they are paying for the test 2-3x year for testing for individuals with most chronic progressive disease. HMOs with capitated programs are the only one't that are a problem. That's the easy part. cpt 95921-59 and 95922-59 My insurance company (bcbs) paid about $100 for the test. I think that Medicare pays a little more. I am glad that so many have participated in this discussion. I will be on my way with some decisions to make. Again, bless everyone here and my thoughts are with you to feel better. Janet

Ansar studies are considered augmentative to Tilt studies, and paid for as such by the insurance industry. Ansar's indication for orthostasis is sympathetic withdrawal (SW). SW typically precedes the clinical definitions of orthostasis, including POTS, OH, and OI. The idea is to treat the dizzy patient before the extremes of POTS occur. Ansar is not going to change therapy for those presenting with clinically defined POTS. Ansar will change therapy for those who are "pre-POTS", those who are not serious enough for TTT and would have to live a diminished quality of life until the symptoms became serious enough (if ever) for the Tilt. People do not have to be trained to recognize POTS using Ansar, because the results are digitally presented. It does not require an understanding and experience with HRV waveform interpretation. POTS and pre-POTS are indicated simply by an abnormal decrease in sympathetic levels upon standing (SW) with an abnormal increase in HR. Ansar can be used to indicate the early signs of POTS and then (as necessary) TTT can be used to confirm. Ansar is a monitoring device. TTT is a diagnostic device. So, I guess the importance is for the future wave of POTSies. My daughter seems to take after me in so many ways. I'm glad that there is an option to monitor her ANS function. If there is any indication that she is getting symtoms, I won't wait until they are severe enough to require a Tilt. Since Ansar is a monitor and not a diagnostic test, it probably wouldn't support SSDI. They are not at Vander or Mayo that I know of. However, Cleveland clinic (in FL) has one. Walter Reed is doing a major study with it, so we will have to wait and see. Talk later... Janet

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.

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.

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

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.

Hey Dizzy, Did you read the posts about ANSAR? I have been trying to learn about how this test works. One thing I read is that if your autonomic nervous system is having a parasympathitic response to a sympathetic challange, you are more likely to have labile bp's. The same thing happens with diabetics who have blood sugars all over the place. It is called PPS (paradoxical parasympathetic syndrome). My guess is you don't sleep so good. PPS is being found to underlie ADD, Gulf War syndrome, chronic fatigue and chronic pain. I am trying to get people who are most affected by autonomic nervous system dysfunction to get their docs to get ANSAR in their office to do testing. ANSAR will try to test you in your doctor's office if the doctor will agree. I was diagnosed with POTS 4 years ago and never heard of ANSAR until January 2006. This has been a blessing for me. On the meds I am currently taking, I no longer show all the signs of POTS. I still have a slight sympathetic withdrawal with standing but no tachycardia. I was so impressed with ANSAR testing, I contacted them in their Philadelphia office. These people are so wonderful and the work they are doing should really change the way doctors look at treatment. Let me know if you want to get help to have your doctor agree to test you in his office. If you have one of the mainstream insurance carriers they will probably pay for it. And your doctor will be able to keep the reimbursement. That's how ANSAR is trying to get into the doctor's offices. They will test and the doctor can bill and keep the money. It beats lunch. Let me know. Janet

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

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

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

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