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.

Hi everyone. I think I was diagnosed with PPS as well. My doctor just said that my parasympathetic is overshooting and thats what i need to regulate, based on ansar test. Can I ask what kind of treatment they offered you? I was given coreg, midodrine and amitriiptoline. I started all three of them and reacted really bad, so stopped and now only started coreg and midodrine and then will add on the amitriptolyn if i will be able to tolerate them. Thanks.

Thank you looneymom. I think i have overshoot of parasympathetic. He just said something with parasympathetic that needs to be regulated. Its hard for me to talk to him, he doesnt give many details. I dont even know if i have pots or what, just said we need to balance it back. I really want to trust this guy, but often have doubts in him. I told him about my side effects, but he didnt pay much attantion to them and said to continue, because i need to give my body time to adjust. I told him that when i took all of the meds he gve me plus xanax, i felt like passing out, and it says on coreg that its a serious side effect and contact your doctor, welli did and he said, its ok, ou not gonna pass out. I said but i called the ambulance because was feeling so bad, he still said its fine, give it time. So i called my primary, and he said that he doesnt like the drugs he gave me at all, just maybe midodrine, but also said if i want to try this treatment then maybe start with coreg to see how i feel and then another ones. I started coreg 3.125 once a day, even though he said 2 times a day, and midodrine 2.5 two times. Today, i only slightly felt lighheaded, i think its due to coreg. Also my shoulders are so sore, not sure if from midodrine or coreg, but think coreg, because i did take midodrine before by itself and didnt have this pain. Its like all over my shoulders radiating towards the neck, feels like muscle spasms. I will give this drugs a little more time. But i think 2.5 midodrine doesnt do any thing for me and I would prefer flurine. What symptoms your son has? Did you find a cardiologist you specializes in this area. I have appointment next month with neuro doc in NY who specializes in this area. I dont know where you located but i know in NY there are like 7 docs who specialize in this area.

I am giving it a try. But after speaking with my physician we decided to start with coreg and midodrine and then add amitriptolyne. He says that by starting all 3 of them at the same time, I will not know what causes the side effect reaction. So yestarday and today i just took beta blocker and midodrine. Will post later how this treatment goes. Ohh, I so hope it helps, but feel that it will be a long road, since I am so sensitive to all the drugs. How much midodrine your son takes? And did he tried fludocortisone. I liked that one better, but the side effect was increased anxiety, gave me panick attacks. Doctor recomended take it at night, but I am afraid my bp will go up when I go to sleep. That was my regular cardio doctor, but the other one that I am seeing now, says that fludocortisone is not good for me, because of anxiety. However, i saw on this forum that many people are taking it. I feel like midodrine is not doing much for me, just giving unplesent side effects, but flurine actually cleared my head and I was able to stand without bouncing effect and also was easier to breath. Maybe i will ask e new doc if I can take it at night instead of midodrine.

I dont know what to do. I will probably just start ssri for now as I see many people benefit from them and will seek second opinion from another doctor. I have already scheduled appointment for next month with a neuro doctor who specializes in dysautonomia. I just want to start taking something, but different doctors keep on telling me different things.

Thanks for the reply. Yes he gave me Coreg wich lowers HR but also lowers BP and because my BP is already in low 100s or 90s systolic he gave me midodrine to increase it. I saw many posts that say thats a standard treatment, but I can understand the purpose of lowering my HR with one drug and at the same time increasing it with another. But I am not a doctor and hope he knows better why he is doing this.

Hi I was recently diagnosed with dysautonomia, not sure which type, but doctor said something with my parasympathetic overshooting. He did an ansar test on me and thats how he diagnosed it. For the past 6 month I thought it was just anxiety. I started with the cough 6 month ago, nobody new what it was so was told its a nervous tick. Doctors tried treating me with anxiety meds. I tried laxapro, but didnt tolerate it, then celexa which was ok, but stoped it on my own because want sure what was with me. Then i had tragedy happen in my family and my primary put me on xanax so I wouldnt crash. Since all this meds i started feeling worse. However i must add that 6 month ago i was also diagnosed with mono. So to make it short, i was on xanax for 2 month then stopped for a month and felt better actually, but then something happened and i started having weird pains in my body and became very fatigue especially towards evening. Also my pulse was going up, which i thought was just stress before the finals. My cardio referred me to Dr. Adaraju in bristol pa. He did ansar test for me and gave me coreg, midodrine, and amitriptolyne. I did search these drugs and some people say they were given same meds. But then i came across message on this forum about this doctor and the reviews are not very good. Someone posted that he treats all his patients with the same meds. I tied them but have very bad side effects. Called him and asked if maybe i could try something else, but he said no, and that he cured lots of patients with this combo of drugs. So my question is was anyone here treated by this drugs and if yes what was the outcome. Thanks a lot.

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.

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?

Hi, i just came across this message and I know it is old but hope that you sill on forum and can tell me what was the outcome. I was recently prescribed same meds which make me feel terrible. I called and told the dr but he said to trust him and that he cured many people like that and that I should continue. I a, scared because the side effects are terrible. I started feeling like passing out at times and i nevet passed out before. My physician and primary physician dont like his approach, so i am so confused. Thanks.

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.

Hi, I am also trying to find an autonomic specialist in phyla area, and so far no luck. I heard Jefferson hospital have some but still waiting for them to call me back. However, I am 31, not sure about adolescence doctors. I do have a doc that diagnosef me in bristol pa, but wanted to seek second opinion, since he based his diagnosis on ansar test only. But i can give you his number if you want to check with him.

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.

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.

Hi everyone. I am new to this forum and have question about the ansar test. I just had it done 3weeks ago and the doc said there is something wrong with parasympathetic and he wants to balance it back with meds. He gave me coreg, midodrine and amitriptyline. I started having symptoms about 6 month ago, after i was diagnosed with mononucleosis. So at first i thought my weakness was due to this virus, but 6 month later, i am still very fatigue, developed orthostatic hypotension, increased HR upon standing, and really bad anxiety. I thought all this time that I might be having an anxiety and thats what causing all my symptoms, but recently had this ansar test done which showed abnormal results. He said my parasympathetic is overeacting, but I would this my sympathetic would be overeacting because of constant feeling of anxiety like 24/7, even xanax doesnt help anymore. I am not sure how accurate this test is. I tried the meds, but the side effects were so bad that i stoped, but doc said to continue. I dont really know what my results mean, so really confused. I am debating wether i should give this meds a try or just try like some ssri for anxiety. How reliable this test is? The oc that did a test is cardio doc who specializes in ans system, so i think i should blive him, but still have doubts about it. Any advise please. Thanks a lot.

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.