Need Advice On The Test That I Had For Ans Dysfunction (Ansar Test), Also New To The Forum.

[Gemma]

Hi everyone! I am new to the forum and I am very glad I found this forum. Since this is my first time writing here, it might be a very long massage and I appologize for that, but I just wanted to tell my story from the begining.

Iwas recently diagnosed with dysautonomia. I am not sure if I have POTs or not. I first was diagnosed with orthostatic hypotension and anxiety. However, my tilt table test showed positive only after I was given nitro pill. I was standing for 20 minutes without any major changes in my vitals, but when given nitro I started feeling like passing out and my heart felt like jumping out of my chest, they lowered me down at HR of 127. Diagnose was vesovegal depsessor, or something like that. So doc told me to take midodrine. I was scared to take it decided to see maybe symptoms will go away. It all started in december of 2012, I got really sick right before my finals and I first thought it was just stress and anxiety. But in few days I got so fatigue that I could barely stand. One day I was taken to ER because of feeling like I am dying. Was diagnosed with mononucleosis. They said that is probably why you so weak. After that all my problems began. I am still very fatigue, lightheaded everyday, never fainted but came close few time. Went to probably 15 diff doctors, all said your health is fine it is just anxiety. They put me on Lexapro which I couldn't tolerate, so went off them. Then put me on xanax, which helped a bit, but I am still feeling really bad. Can't do any of the life activities I did before. I developed fear of dying of unknown cause. It is like a never ending circle for me, I am scared everyday that something bad will happen to me. My most scary symptoms are lighheadness, hard to breath (always feel like not enough air), scared of passing out and also when I stand feel pressure in my chest like something is pulling me down. Also, I feel like i have constant anxiety 24/7. About 3-4 weeks ago I was in ER again with chest pains, this was probably the 10th time in ER with same symptoms, and finally I said do a chest CT scan to check to make sure no PE or something. After they did CT scan in which they used Contrast dye, a day later I was back to ER, because my HR was jumping to 120 just by getting up from the couch and resting was like 60-70. In ER they refered me to cardio doc, who said ok you have orthostatic hypotension, try fludocortisone. I tried that drug and it gave me even more anxiety, but Other symptoms seemed to decrease. But I stoped it because of increased anxiety. Then my cardio doc refered me to the doctor who specializes in autonomous nervous system. He did this weird test on me called ANSAR and said that I have a disbalance in my ANS. He didn't specify if I have POTs or not, but said something with my parasympathetic. He said he can balance it back to normal and all my symptoms will go away as well as my anxiety, which is the cause of dysautonomia. He prescribe me Coreg, Amitriptyline and midodrine. I started the drugs, but felt like a zombie on it, also came really close to passing out. I also take xanax for now. I stopped them after only 3 days taking them, called the doc, but he said to continue and that he is sure this drugs will balance back my ANS and i will be back to normal. I am so scared to start again because of all those side effects I experienced. I felt like I was not in my own body, had tunnel vision, very dizzy to the point of almost fainint. He said its just the adjustment period and I should give it at least 2 weeks. I am very concerned with all of this. Did anyone here had the ANSAR test done. I am not totally cnfident in that test. So now I am not sure what I even have just anxiety or ANS dysfunction. I dont know if I should follow my psychiatrist advise and start anidepressents of follow the ANS doc advise and try those meds. If anyone reads this long message and knows somethis about this test, please give any advise possile. Shoudl I do more tests to figure out if I really have ANS dysfunction. All my other blood tests came back normal, thyroid normal, cortisol normal, echo normal, ekgs normal, holter monitors normal, eeg normal. I dont even know what else to test for. My symptoms are very fatigue especially towards evening, constantly lighheaded, dizzy, chest pains, sometimes palpitaions, sometimes hard to stand feel like bouncing and like something is pushing me down, also when stand still sometimes feel my heart beating in my chest. I dont know what is going on with me. Any imput from anyone would be greatly apreciated. I just want to figure out what is going on with me and try to find treatment and get my life back. I was always so energetic and outgoing. This year started on my second career of Physical Therapy and now due to the sickness had to take a medical leave of absence. I hope I find some treatment so I can go back to school and do my daily life activities.

Thank you so much to everyone who will spend their time reading this long post and gives me any advise. I would really apreciate any imput possible.

[potsdo]

I had an ANSAR test and was prescribed the same medications as you were. I couldn't get the Midodrine as it was out of stock at the pharmacy, however, I did start taking the Coreg and Elavil (Amitriptyline). It took a good month before the meds started kicking in. That was a bad month - my ANS was completely out of whack. It's been 8 months and things are starting to stabilize. I would say keep up with the meds, but, don't expect miracles overnight. It's going to take some time. The meds you were prescribed are centrally-acting medications and work faster than peripherally-acting antidepressants.

Here's a link for more information than you'll ever need on the ANSAR test:

http://www.ans-hrv.com/interp_univmiami_fr.pdf

[Gemma]

Hey. Thanks so much for the reply. As I said I am new on this forum and I am so glad that at least someone answered. I tried taking them couple of times and keep on stoping, because feel totally zombied out and at some point feel like passing out, also it lowered my. Pulse to low 50s, so I got scared. Is this normal side effects while the body adjusts to meds. I really want to start at least some kind of treatment, but so far so sensitive to all meds. Before I was diagnosed with ANS dysfunction my other cardio doc gave me fludocortisone to retain the water since i had symptoms of lightheadedness because of orthostatic hypotension. I did make me feel much better, but increased my anxiety so much that I had to go back on xanax after not taking it for a month. Now I am mad that I am back on xanax after going thru horrible withdrawal symptoms. So, how the drugs are working for you? My doc saying that he will probably be able to balance back my nervous system with this meds. Did your doc said if you would have to be on them forever or there is hope that it will balance out your dysautonomia and you could get off them. He told me take them for 3 month and then we will do another test to see if there is improvement. Did you have any improvement in yours? Sorry for so many questions. I am just so glad I found this forum and can relate to other people that have same problems as I do. For the past month I had no clue what was going on with me and thought that I just have some terminal illness as cancer or something and will die soon. This is a scary experience. Did you have any other tests done, any advice on what tests I can do to confirm the diagnosis? I had ttt positive with vasovagal response, all cardio work up such as monitors, ekgs, echos, blood tests, stress tests, checked thyroid, adrenal glands. Do I need some other tests and who would perform them. I saw people wrote here on forum about some tests that I neve heard of, like histamine levels, and some othe tests. Thanks.

[Gemma]

And thanks for the link. The problem is I only have one page of my test with graph, but in white and black. Also the doc didnt really specify what exactly I have. He said something with parasympathetic and need to balance that. But i always thought since my anxiety is like 24/7, there should be a problem with sympathetic, instead he said parsympathetic. That is why I am not sure if he chose the right treatment for me.

[looneymom]

Welcome to the forum Gemma. So sorry you are going through all of this. You are very lucky to have been referred to a doctor that specializes in the nervous system. My son has been diagnosed with POTS. I have never heard of this test before. I'm glad that you posted this because I am doing quit a bit of research on dystonia testing. With dystonia you can have problems with the sympathetic and parsympathic sides. Medications affect people differently and some medications take awhile to get into your system to start working. I would keep asking you doctor questions. Dystonia is not a psychological problem but when your body falls apart on you, it's hard not to be anxious. Hang in there and post your questions.

[Gemma]

Hey looneymom. How was your son diagnosed? Did they do TTT test. I never fainted on TTT test and was fine standing for 20 minutes, after which they decided to give me a nitro pill and then in 6 min I started feeling like I will pass out. So basically they induced my symptoms, which is really questionable if that is what I have. But the ansar test showed some abnormalities. I must say I do feel worse then when I did a TTT 2 month ago, so who knows what it would show now. I am still doubting if I do actually have dyautonomia or not and thats why scared to try the drugs to make it worse, because some of those meds can mess you are even more. I do have another appointment in NY with another doctor who is a neuro specializing in dysautonomia. I wander what he has to say about my condition. In meantime I decided to give it another shot with those drugs, but will lower amitryptoline dose by have. I never in my life took more the tylenon, so I am so scared of all of the drugs and apparently I am so sensitive.

[looneymom]

My son has actually had 2 tilt table test done. The first one was done by a cardiologist that had read through my son's medical records. He was impressed that we had been seen by a headache specialist that had done the poor man's tilt table test in his office. The headache specialist was the first doctor to suspect that my son had POTS. So the cardiologist ran the test and he had to stop the test because my son's symptoms kept increasing. He was afraid my son was going to pass out. The test was positive for POTS. A few months later, my son went to MAYO. MAYO also did the test again and it was positive. I think it is wise that you get a second opinion. If they decide to do another tilt table test, ask if you need to stay on medications. My son had to be off his medications 48 hours in advanced.

Was there a reason for giving you the nitro pill during your tilt table test test? I've never heard of this being done before. Were you having problems during the test? If you are scared of the new medication dosage, why not call your doctor and see if you could start at a lower dosage. Make sure that your doctor understands how sensitive you are to medications. Several people on the forum have this problem.

When you go to see your new neurologist, be sure to explain what symptoms you were having in the beginning before you ever had the tilt table test. A virus can be the start of POTS but not always. Be sure to go through and read the information about different types of dystonia. Hope your next appointment goes well and you get some answers.

[potsdo]

I had all the usual ANS tests (Tilt-table, etc) and was on the usual meds (Florinef, Toprol, SSRI, etc). These were all peripherally-acting meds and de-stabilized my condition even more. Read the section on Paradoxic Parasympathetic Syndrome in the link. It may seem that all the symptoms are being caused on the sympathetic side when in actuality, it's the parasympathetic excess which causes an exaggerated sympathetic response. So the treatment is to suppress the parasympathic side which is done by using centrally-acting meds. If you're medication sensitive, you can start at the lowest possible dose and work your way up every few weeks. If you look at the data in the link, it says that autonomic balance can be restored in 12-18 months (if there is no permanent damage) and some people do get off the meds. I've had definite improvement, however, I've been down this road before and I suspect I'll need to be on some meds on a continuous basis. Only time will tell. Don't give up and don't be afraid to try new treatments/meds. The most important thing is to not let this illness control your life.

[Gemma]

I am trying not to let this illness to control my life, but I just feel like I live in fear everyday, feel like will die everyday. I wanted to try ssri just to see if that might help. My pshychiatrist gave me to try ssri. I tried taking coreg and midodrine today again and felt bad again. So I am thinking maybe i should try ssri and wait for the other doctor to tell me what to do, because it looks like coreg is not working for me and the doc that prescribed them says to continue even if I feel like passing out from them, that is kinda disturbing. Looneymom, how do you get appointment at Mayo clinic?

[Gemma]

Docpots when you first started the drugs did you feel worse. I feel like I am short of breath, very lighheaded at times feeling like passing out, also tired. Overall feeling is not good. Were you like this for a month? And you mentioned that you now see improvement 8 month later, so all these 8 month you were not well. And why ssri didnt work, you couldnt tolarate them, or there was no improvement with them at all? And by any chance is your doctor in Pensylvania. My doctors name is Dr. Adaraju. And I saw here an old post that someone wrote in 2009 that he treats all his patients with same meds and it is not always right.

[potsdo]

I definitely felt worse when I first started the new meds. I was on the old meds (SSRI, etc) for 8 months with no improvement and essentially bed-bound. I forced myself to walk and do light weights until I had enough strength to go see my parents in Pennsylvania (I live in Florida). My mother's cardiologist has a brother who's also a cardiologist who happens to specialize in dysautonomia. Coincidentally, he's the same Dr you saw. He actually wrote the interpretation and treatment protocols for the ANSAR test. He has an extensive database of patients he has treated successfully. I'm glad I saw him. It's been a difficult 16 months, however, his med regimen has definitely helped me to where I can go back to work.

[Gemma]

Wow, thats interesting. So we have the same doctor. I really want to trust him and his treatment, but hate the side effects. Today I took coreg and midodrine. Trying to introduce these two to my body and then will add amitriptolyne in a week or so. However, my cough got so severe, its ridiculous. I used to have like a tick caugh since last september, but this two days the cough is almost like asthma attacks, its dry and persistent. I dont think it is midodrine, maybe coreg. Will call and ask him if he can maybe switch me to another beta blocker. Also, have really bad shoulder and neck pains. Did you start to feel at least a little better after a month or so, or were you feeling bad for 8 month before starting improving. I can walk and stuff, but often get lighheaded. I do go to stores but with someone becuase afraid not to faint, even though I never fainted before. I developed this fear of dying and everyday wait for something back to happen. That is why I was thinking to go on untidepressents to get rid of the fear, because xanax doesnt help anymore at the dose that I take.

[looneymom]

Gemma

I had to get my primary doctor and cardiologist to refer my son to the MAYO clinic. My insurance wanted referrals from at least two doctors. After the referrals were sent, it took about 4 months to get in which was quick. However, I had more than 2 referrals. The headache specialist that my son saw early on happened to be a former MAYO clinic doctor. Probably because of his referral, my son was seen quicker. Hang in there with your doctor. The test that you had run was a good one to start with.

I just talked to my cardiologist about this test and he said it's a good one to have run. It's a whole lot easier than the tilt table test. I did mention to him the medications that you were being treated with because I did not know what Corig was. That when he ask if my son had ever been on a beta blocker. So the cardiologist is going to look back and see if he has been on one. So glad you post this, it has given my cardiologist something else to consider.

[Gemma]

Hi, i have some news. So I so this doctor who specializes in inbalance medicine. She explained to me my ansar test and said that its a good test. However, eventhough she kinda understands his approach to treatment with those 3 drugs, but she says it will just take away my symptoms (maybe). She belives there is a problem with my adrenal glands. My cortisol level showed too high, so i am basicly constantly stuck in overdrive, this is where my anxiety and other symptoms come from. She will run few more tests for me to confirm it, but says that she is pretty sure this is what I would need to treat, the underlying cause. I will post the outcome of it. She is located in pensylvania. My moms friend had diabetes which she treated. She is not in network with any insurences, but I thought i would give it a try. She is very familiar with this stuff, so we will see what her next steps will be. In meantime, unfortunatly I had to stop taking coreg. My cough just got out of control. I called doc who prescribed it and he still havent called me, so I called my other cardio doc and he said to stop it and just take midodrine for now, because it does look like I have some kind of reaction to it.

[looneymom]

Good for you. Hang in there with your doctors. Sounds like you are getting somewhere.

[MomtoGiuliana]

My cortisol level showed too high, so i am basicly constantly stuck in overdrive, this is where my anxiety and other symptoms come from. She will run few more tests for me to confirm it, but says that she is pretty sure this is what I would need to treat, the underlying cause.

Just my opinion and from my experience, but I would suggest caution with this. I don't know what a specialist in inbalance medicine is. I saw a naturopath for awhile b/c I was so desperate for answers (and had no diagnosis). She told me my cortisol levels were high and that I had adrenal gland problems, or "adrenal fatigue". She wanted to treat me with a number of different herbal and animal product remedies. I tried some of them, others I was too afraid to try after reading about them on my own. In the end, none of her "treatments" were at all useful for my symptoms. When I finally did get diagnosed I called her to let her know what my diagnosis was--she said, that's what I told you you had! But she had never mentioned autonomic dysfunction or POTS. She was focused on calming my adrenal gland. While she was sort of on the right track, her diagnosis did not have a scientific basis, and importantly, did not help me to get well. Perhaps the treatment regime she offered helps others, but this is my story.

Ideally it would be good to see a specialist in autonomic dysfunction.

[Gemma]

Thank you for a feedback momtogiuliana. She is not really homeopethic doctor. She just takes different test results and puts it all together and then tries to dig deep to find the cause why its happening. What I dont like what my cordio doc is doing is that he doesnt really say what exactly I have. I assume I have POTs but not sure. I just know I have some thing with my parasympathetic, and need to balance that back. What I am concerned with is that he claims he can cure me and he did cure other people with the same combo of drugs he gave me. None of the docs seem to make sence why only these 3 drugs. When I have reaction to them and ask him if I can try something else, he says no, it has to be these 3 drugs. So I started slow only with coreg and midodrine and told him I will add amitriptolyne in a week. He said its fine. However, afer 3 days i developed persistent cough and called him, and he again said your body is just adjusting. Unless I have asthma I am fine with coreg. Well I dont have astha but I do have like a nervous tic cough and also, I have asthmatic allergies. So I took another dose in the evening and felt even worse, called him and left a message, 2 days passed never received a call back. I called my other cordio doc and he said to stop the drug because it is defenetly a reaction to coreg. I really want to belive in the treatment of this autonomous doctor, but he seemed to show no interest, gives no explanation, didnt even bother checking my hormons, doesnt want to try any other drugs with me. So, I feel like giving uo on him. He just bases his treatment on these ansar test. I called the office and asked if I can have results of my ansar, but was told they only have one page and doctors notes, nothing else. Very unproffesional. I know there is someone on this forum that was treated by this doctor and says that his treatment worksa and I wish that it would work for me as well. But the meds that he gives me make much worse, not any better. About cortisol levels I just found out couple of days ago. So you saying you had the same? Does that mean that people with dysautonomia can have increased corisol level. What she told me, that you need to find the underlying cause of my dysautonomia, not just treat the symptoms. Se says that my elevated ACTH and cortisol is the problem and I need to treat that. Does this sound like nonesence. I am already so confused and lost. Do not know who to trust and how to be treated. I seemed to like her, she seemed very knoweledgable and knew a lot of dysautonomia, was able to describe to me my ansar test and explain what is going on with me. But said that she is not sure with his treatment plan, because that would just block the symptoms for now and we need to treat the reason and for now she think the reason is my adrenals. She is still running few more tests for me and then will decide what to do. For now I am just taking midodrine and xanax, nothing else.

[MomtoGiuliana]

I'm sorry you are in such a frustrating situation right now. It is concerning that your specialist did not return your phone call. I dont know where you live but perhaps you could try a different autonomic dysfunction specialist. An EP or a neurologist might be knowledgable if you are not close to a larger institution or a doctor listed on DINET. I have to say it sounds odd that he would use the term "cure" and also that he would be insistent that there is only one treatment that would work. There are many meds that are used for treating dysautonomia -- if you spend any time on DINET you will quickly see how different we all seem to be and that what works for one person does not necessarily for another.

As far as treating the cause of your symptoms--if it is dysautonomia, the cause can be complex and/or unknown. I am not sure what would be meant by the cause is the adrenals. Many of us on DINET do now know the cause of our symptoms. I have no explanation. We have to treat the symptoms only for that reason. I would be skeptical of someone who says they know the cause without sophisticated testing--eg at a research hospital, sometimes causes can be pinpointed--but often not, and even if a cause is determined, still, the symptoms have to be treated, rather than the cause.

Is this second doctor you are seeing a specialist--eg, endocrinologist?

IMO, a specialist who is a medical doctor is likely to be most helpful.

[Gemma]

She is an MD, but something to do with holistic medicine. So now I am not even sure if I can trust her as well. She also says we have to calm down your adrenals because they are in overdrive due to stress. My ansar showed that I have paradoxical parasympethetic and she says we have to calm down your adrenals. Now cardio doctor was saying that he can treat it and reverse it and I will be back to normal, but I have to stick to those meds, that I cant tolarate. This is ridiculous.

[Gemma]

She gave me something to take at night, its called Phosphatidylserine. Need to take 5 capsules. Maybe you are familiar with this stuff. She said it will help lower cortisol and let me sleep better without waking up at night. Ohh, I am so frustrated with these doctors. If they dont know something they should just say we dont know. Instead all of them say their opinion which makes me even more confused.

[MomtoGiuliana]

I am not familiar with this supplement, but there has been discussion on DINET about it. You can do a search for it in the forum, but here is one recent discussion:

http://forums.dinet.org/index.php?/topic/19388-phosphatidylserine-has-anyone-tried-this-supplement/?hl=phosphatidylserine

As far as your cortisol being high, I would consider seeing an endocrinologist if this doctor is concerned about your cortisol levels. Cortisol rises and drops throughout the day and from minute to minute, from what I understand. After I was told by the naturopath that I saw that my cortisol was "high" (based on a saliva test) I saw an endocrinologist. He did not believe I showed signs of problems with cortisol production. Cortisol is produced in higher amounts when we are stressed, hurt or sick. There are specialized tests that an endocrinologist would use to determine if you have some sort of dysfunction with cortisol production, from what I understand.

[Gemma]

I did see endocrinologist. My primary send me to see her about my hormones. She is on vacation so I haven't spoke to her about my results yet. But my primary and this other doctor looked at results and said that it was elevated. I had one done at 11:30 am and that one was normal, then one at 8 am and that one was double of what normal should be. Also had an ACTH challenge done, where they took blood, then gave me some steroid and then drew blood again every half hour three times. It was elevated 2 times out of 4, so they said it is not good. This was done at the hospital and I felt very calm there (i do feel calm when I am around hospitals lately, not scared if something happens to me ). But I am still waiting for endocrinologist to call me at tell me what she thinks. But thanks a lot for the advice and information.