april abbott

Hi,all. It has been a while since I have posted, but I have been a very busy gal. I started college this summer and have been going four days a week, so I have been swamped. Anyway, I finally started seeing a dysautonomia specialist, here in Alabama. I like her a lot and she got me started on Klonopin .5 MG every night and 25 MG of Atenolol(Tenormen) 2x daily. That routine has helped me a lot for the past six months or so. However, I recently got an endoscopy done on Thursday July 20th. I was told that I have a small hiatal hernia and Gastritis. I was prescribed 40MG of Nexium a day, which I immediately started. Well, since that day I have felt like crap. I have been so tired every single day that I can barely keep my eyes open and I have been getting a little dizzy and I am perpetually thirsty, no matter how much fluid I take in.(and I take in a whole lot of Propel and water every day). Nexium doesn't have these symptoms listed as side effects so after about ten or twelve days of dealing with this, I contacted my dysautonomia doctor by email and explained the situation. Initially, I thought that maybe the Nexium was effecting the absorption of my other meds. But the doc says no. I was emailed back and told it sounded like anxiety and she wants to start me on 37.5 MG of Effexor and after a week of that, move me up to 75MG daily. Well, I don't know if it is anxiety. I am under some stress at school, but it almost seems like my regular dysautonomia symptoms. And the problem is, even if it is anxiety, I am very reserved about starting another med. I am 27 years old and I take 5 pills a day. Also, I have heard some bad stuff about SSRI's and the last one I tried(Zoloft) was a nightmare. I read a little about Effexor on the internet and it sounds awful. It has a lot of side effects, and the worst part is that it is hard to get off of it once you start. It is one of those drugs where I will have terrible withdrawal from when I want to quit. Does anyone here have experience with this drug or one that is similar? I am already on a benzodiazopene(Klonopin) and a beta blocker(Tenormen) for the Dysautonomia. In my opinion, I shouldn't be having anxiety symptoms while on these drugs. And as I stated above, this all mysteriously started right after I had my endoscopy. Any advice?

I have "near syncope" feelings and have for years but have never actually fainted. My bp never gets low but stays normal/high. There is no way to predict what will happen for you. Have you been to a doctor or been diagnosed? With me, I don't really feel dizzy or like I'm spinning. I just get very light headed and short of breath and weak.

Thank you both for your response. I really don't want to start the new doctor game again but might have to. Nice to hear from you again, Katherine.

Like many of you, I have a myriad of symptoms that bother me at different times. But I have been really well with the dysautonomia for the past several months. Now, I feel normal about 85% of the time, with attacks coming out of the blue periodically. I am really considering starting courses at a state college and hopefully beginning work in a couple of years, maybe just part time. So now, more than ever, it is important that I get my symptoms under control. I haven't worked in years so this will be a big change, and like many of you, of course I fear getting out in the world and having a total meltdown. I can't imagine what it is going to be like after I graduate and try to find a job while hiding the fact that I have a disorder that can render me virtually useless at times. I haven't seen a doctor in years, although there is a dysautonomia specialist about 60 miles from here if I change my mind. So I am not taking any meds at all for the dysautonomia. My main concern about my symptoms is the extreme weakness that hits me all at once. It comes quickly and without warning and will last anywhere from 30 minutes to a few hours. Sometimes my brain gets foggy and I feel light headed when this happens and other times it doesn't effect my mind at all. I get weak to the point I *have* to sit down, close my eyes and breathe deeply. I can't even really raise my arms. It starts out usually in my stomach muscles. They will start to feel fatigued and crampy. Then my legs and arms begin to feel extremely fatigued and if I keep going I get weak and shakey all over and really short of breath. It is an awful feeling. I feel extremely fatigued all at once and extremely weak. I sometimes have noticed that my heart will be going a little fast when this happens. What I want to know is what about my dysautonomia, in particular, is causing this? I don't get low blood pressure like some of you do. Mine stays normal/slightly high and when I stand my heart rate rises and so does my blood pressure. All my other dysautonomia symptoms seem to be under control. Is it lack of blood flow or what? You see, I really do not want to be on meds right now because most of the time I am fine. I only have this weakness in spells and I would hate to take a medication every day that will give me side effects on the days I would otherwise feel good. I would love it if there was a pill I could just take during the spells but I don't know what even causes it. I'm wondering if I should bother going to the doctor again because I don't know if there is anything he could do to prevent it. I have been on beta blockers before but I don't think that they would help with that particular symptom. If anything, a beta blocker might make my weakness even worse. Have any of you found anything that helps this?

I am sorry you are having a hard time. With me, dysautonomia started during my pregnancy so I know all about having a hard time. I puked for about 4 1/2 months and the pots symptoms started at about month 4. Dizzniness, light headed, feeling overwhelmed, unable to stand, fatigue, breathlessness, etc. Just get as much rest as possible and stay close to family. I had a healthy baby but my symptoms worsened after. But, then again, I had pre-eclampsia and was on bed rest for 2 months post pregnancy. At least you have already been diagnosed and have doctors that know. Good luck and take it easy.

Thanks for the replies. I will have it checked out when I go to the doctor. I have had this problem for several months but have kind of ignored it because with all of our weird symptoms it is easy to blame it on the dysautonomia and then forget about it. It doesn't really seem like it has gotten progressively worse or anything but it is still worth asking about. Right now it is nothing more than discomfort.

For the past several months I have had some stomach sensitivity. There is feelings of pressure and I can't stand to wear high rise pants or a belt, even when they are not tight. It feels like an elephant is sitting on me when I try to lie on my stomach and like my circulation is getting cut off and I can't breathe. Anyone have any ideas? I sometimes have heartburn and acid reflux but don't know if this is related. No burning or tenderness in my stomach. No problems eating, although I stay nauseated alot but that has always been normal for me.

There are alot of us who have proposed a hormone theory, based on the fact that some developed this during or after pregnancy. I starting having symptoms of dysautonomia during the 4th month of my pregnancy. I wasn't diagnosed until my daughter was around 10 months old. Some women don't get symptoms until after birth. Anyway, my symptoms only worsened after giving birth and continued to be severe while I was breastfeeding. Also, my symptoms now seem to be worse during my periods every month. But, this is nothing more than a theory and there isn't much info. to back it up.

You're absolutely right, steph. I do believe in being prepared and informed BEFORE a dr visit because, unfortunately, I have learned the hard way that doctors don't have all the answers and can do more harm than good when unwilling to fully listen or understand such an enigmatic illness. I have always asked a ton of questions and written them down before hand, as well as writing down symptoms, treatments, etc. into a very detailed diary. But usually some very unwilling and arrogant doctors saw this as a sign as being a hypochondriac. You know, if you write down your symptoms and spend a lot of time on researching and informing yourself of your options, then that makes you paranoid and anxious. Some docs seemed to think that all I did was sit around all day with my nose in medical books and internet sites, picking out different illnesses that sound scrumptious. Hmmm...light headed: that sounds good. Dizziness, palpitations, frequent urination: give me a few of those. Oh, and chest pain, weakness and trembling: I will give those a whirl. When, in fact, I was the one doing myself the most help. Some of the docs I saw seemed so clueless. I KNEW it wasn't anxiety or depression causing my symptoms, and yet, I was being force fed that idea for years. I knew that there had to be a name for what I had and of course I chose to delve into the research to get some ideas and gain knowledge to help my situation. The only worries I have is about medication. I will probably have to reaffirm my diagnosis at the clinic with more uncomfortable testing but that doesn't scare me as much as the meds I will have to try until I find the right one. Side effects of some drugs can be very scarey and I have a five year old to take care of so the last thing I need is to freak out and be incapable of functioning while having a bad reaction to some medicine. I think the key is to try very low doses and give myself time to adjust. I don't have symptoms every single day but on the days I do I am incapable of functioning. I just want to be able to go to work or school and be dependable again.

Thank you all for the informative answers you have given. Yes, this has helped me reach a decision that I have been mulling over for several weeks. I have decided to try again with the doctor and meds. Wish me luck. I have a dysautomia clinic about 80 miles from here so hopefully my insurance will cover it.

Has anyone here actually had worthwhile results with meds? I mean, I know a lot of you are on some type of medication with maybe some positive results and there are many different types. Some of you are on beta blockers, some try calcium channel blockers, SSI's, antidepressants, etc. But, in all honesty, is it worth it? Because so many of you are on meds yet are posting here regularly about major symptoms and many of you are on disability and still suffering from this terrible disorder. And I wonder, should I even bother going back to the doctor? Should I give meds a try when they didn't seem to work before? I will have to pay to see a doctor, pay for meds I can not afford, somehow manage the side effects of different meds that may or may not help and could even make me worse. I was diagnosed about five years ago. I tried a beta blocker, Lopressor, with no success. In fact, it made me much worse. I went to a cardiologist, a neurologist and an endocrinologist and none of that got me anywhere and at the time I was broke and had no insurance. I finally made the decision to give up on the whole charade and stopped the doctor visits and meds. I had a rough few years and this was following the birth of my daughter in 1999. But last year I thought that had finally gotten back on track. I had several months with little to no symptoms and felt like I was simply better. But then, wham! Now my symptoms are back. My life is upside down again. I have good days and bad days and I am not nearly as symptomatic as some of you but it has hindered me so much. I have been a stay at home Mom for the past five years and now that my daughter is starting kindergarden next week I will be facing some decisons. Or, rather, I will be facing a lack of decisions. I would love to either start some college courses(I am just 26 years old) or return to work part time. Unfortunately, we really need the money from a second income so the weight of that burden sits on my shoulders. And now here I am sick again and feeling completely helpless. So now I am thinking. Should I even bother? If I honestly thought that my symptoms would dramatically decrease then I would go for it but I just don't see that happening with any type of therapy. I hate doctors and like many of you have had horrible experiences with many of them. And a lot of them are ignorant of this disorder. I haven't been treated or tested in so long and when I did see doctors, I hopped from one to the other sporadically so I would have to start over. More tests, more meds, more poking, prodding and monitoring. When I was first diagnosed all I was told was that I had a condition called dysautonomia. I had no idea that there were different categories of this disorder and that symptoms varied so much from person to person. This website has been informative and encouraging. However, it is also a reminder of all the negatives that could happen. Reactions to meds, ER visits, painful and scarey tests, rude medical staff and an exhaustive search for a therapy that may not exist for me. These are my symptoms: I never pass out but I get very light headed, which is my worst symptom. I get short of breath, my heart races, palpiations, muscle fatigue, intolerance to exercise or any type of brisk activity, intolerance to heat, extreme fatigue, muscle cramps, shakes, sensitivity to any type of medication and alcohol, anxiety attacks, chest pain and when I do get even a mild cold or virus I am nearly bed ridden and all my symptoms are exaggerated. My blood pressure stays a little high all of the time and my heart rate is commonly above 100 at rest. It isn't uncommon for it to be 116-120 when I am feeling cruddy. I take my bp during this time and it doesn't seem to drop or be low at all. In fact, it stays normal/high and so does my heart rate. So, how many of you really see dramatic improvement with meds? What type are you on and what difference did it make in your life? Also, I would like to hear from those of you who have chosen to stay away from traditional prescription meds and please let me know what helped you.

Hi, Deb. I have found by reading this board that a lot of women seem to be worse during their period. I am one of them. I don't know what the exact connection is but hormones do seem to play a part. My dysautonomia symptoms are mild compared to some people on this board but during that time of month they are worse. I get light headed, foggy minded, short of breath and my heart races more. My symptoms began during pregnancy so obviously that is another huge hormonal fluctuation. Also, I have very weird symptom during my periods and it also occurs while on any kind of bcp. I have terrible circulation during this time. It is so bad that my chest hurts, my arms and legs fall asleep and feel tight at night, even when I am lying on my back with my arms and legs to my side. It feels as though I have rubber bands at the tops of my legs and arms and they aren't getting any blood. They don't turn blue or feel cold; they feel achey, tight and prickley. Massage helps but only temporarily. That is why I stopped my last bcp. I couldn't sleep at night because my circulation was so bad. Anyway, you are not alone on this.

I have tried several different kinds and never could really tolerate them very well. The one that seemed to give me the least symptoms was Alesse. It is a very low dose monophasic pill. Right now I don't take them at all.

Thanks, MightMouse! I will check it out.

Welcome. I am new here too so I am in the learning process. I can tell you that this board had been VERY helpful because I am finally learning that other people are having the same scary symptoms that we are and yes, we are still going. I have had very similar symptoms. Most of us have. My heart rate generally stays really high now but in the beginning I had days where it would go really fast one minute and the next minute it would go really slow and hard and would skip or double up beats. I have woke up from a peaceful sleep many times with my heart rate racing like mad for no reason and that is scarey too. You didn't say what kind of doctor you have seen, what you have been diagnosed with, if anything, or if you are on meds. For many of us it has taken many, many doctor visits, many years, and a huge amount of tests before being diagnosed. You have to find the right doctor before you can begin a good treatment. For me, like many others, it was a cardiologist that was the good one and he diagnosed me with a tilt table test. The bottom line is that you need to see a doctor and, unfortunately, your doctor might have to do some other tests to rule out some other possibilites because your symptoms could mean a number of things, not just dysautonomia. But I can tell you that we are all familiar with getting back all the bloodwork, scans, holter results, EKG results and hearing "everything is normal" because those kinds of tests are not going to diagnose dysautonomia. Good luck and find a doctor that is compassionate and that you can trust because that will make a big difference in the outcome. Take your symptoms seriously and get treatment a.s.a.p but try not to stay so anxious. I know it is hard because these symptoms are scarey but believe me, so many of us deal with it on a daily basis and we have all learned at one time or another that we can live with it.

Thanks for the response, Ernie. No, I have not tried that yet and I grit my teeth when I even think about being on meds. It has actually become an irrational fear of mine to take anything. But after so many sensitivities to meds, who could blame me? I just wanted to know of some personal experiences with some of you on this board. I don't even know what is even out there right now.

I am not on meds now and haven't been in a while. I was unable to tolerate a BB and I was on Zoloft for a while and that was terrible. I have so many med intolerances now. I was just wondering what medications are possible for treatment of my symptoms. Right now I get the brain fog, anxiety, muscle weakness, light headedness, fast heart rate and shortness of breath but my bp seems normal. It actually can be a little on the high side. So even when I feel bad my bp doesn't seem low. I was wondering what med options that are out there that really calm me down and mellow me out and help me feel less anxious, maybe lower my heart rate. I don't want to be on something that is going to make me sleep all day or be in more of a fog. Is there something I can take only when I have to, during an actual episode or am I limited to taking something every day to keep it in my bloodstream. Because I do have a lot of good days now and I don't want something in my system all of the time. My light headed episodes don't seem related to low bp so I am at a loss of how to treat it. I know this seems like an odd question and it does require a dr's opinion but you guys have so much experience in this area and I wanted to see if any of you have any ideas.

thank you all for the responses. Yes, my heart rate stays high. It usually is between 80-90 while resting but can be well over 100. When I am sick my symptoms are 10 times worse. If I have a cold or virus or just don't get enough sleep, I feel terrible and my heart races constantly. The last time I was sick my heart rate stayed at about 120 beasts per minute while at rest and I was so out of breath that I could barely talk. I felt like I had been running a marathon. I just got my insurance packet today and it will be less than 30 days until I get benefits. I will try to get in to the dysautonomia clinic if my insurance will cover it. I don't know about the pre-existing condition exclusion. Technically, I have been diagnosed with dysautonomia but then another doctor said I didn't have it and I haven't been seeking treatment for it at all so I'm not sure if I can get away with it or not. I do believe that I have dysautonomia. I just hope one day I will find some methods/meds that work for me. I use to be in really good physical condition before the pre-eclampsia, bed rest and illness but now I am in horrible shape. I really am itching to start working out again but I have such an intolerance to physical activity now. I joined a gym last year but got scared because every time I used the treadmill for about 30 minutes, I would get off extremely dizzy with a headache and my heart rate gets really high with even very light activity. Lifting anything heavy makes my heart pound really hard and get dizzy. Maybe I can do a light routine and build myself up slowly.

thanks, Katherine. It is nice to hear from someone with a similar experience. I guess we all just have to take it one day at a time. I'm just trying to deal with the heat and humidity right now as well as staying hydrated since I want to pee about every hour and then get up 6 or 7 times at night to pee. I'm drinking tons of Gatorade and my insomnia is finally getting better so that is something.

thanks for the response. My symptoms began during pregnancy but I only had "spells" once in a while during that time. They became full blown after delivery and worsened for several months. The bp issue is what I am not sure about. I won't have medical insurance for about another month so i won't be going to the dr. before then. There is a dysautonomia clinic about 60 miles from here so that might be an option if I can get my insurance to cover it. I already have thousands of dollars worth of medical bills at this point and don't need any more. Besides, I'm not sure what good it would do if I can't find meds I can tolerate.

I was diagnosed with dysautonomia about 4 years ago with a positive TTT done by a cardiologist. Of course I went through many other blood and urine tests, heart monitors, EKG, and many others for over a year before seeing the cardiologist and being diagnosed. And there were a few late night ER visits with heart racing and palpitations/dizziness. After the diagnosis I pretty much quit my follow ups with the doctor. He had given me a Beta Blocker(Lopressor) and it made me tremendously worse. I began to wonder if his diagnosis was correct and also at the time I had no medical insurance and no information about this disorder. After the beta blocker and trying an anti depressant that also made me worse, I swore of all meds and decided to live the best I could with my condition. It has been a long time since I have been to a doctor and for the past year I was doing great but now symptoms are back. Brain fog, light headed, feeling like adrenaline is surging, anxiety, numbness in limbs, frequent urination and dehydration, heat and exercise intolerance, chest pain, heart palpitations, shortness of breath, intolerance to alcohol and meds, blah blah blah, etc. I am now wondering about the diagnosis. After finding this board a few weeks ago I have seen so many people that mirror my symptoms and circumstances. All the symptoms that have read sound like me and now I think that dysautonomia was a correct diagnosis. But I didn't know until finding this board that there are different types of dysautonomia. Mine began during pregnancy. One of the main questions I have is about my BP. I thought that most people with this disorder have low bp, especially while standing. But my BP had always remained high when I was first diagnosed.(Now it seems normal to slightly high). I got pre-eclampsia at the end of my pregnancy and my bp never seemed to go down. During the TTT I was tilted around but never had any symptoms UNTIL they gave me the IV medicine that sped up my heart rate. It was terrible. My heart raced and pounded so hard against my chest that it hurt. My knees buckled and I became very dizzy. My blood pressure was taken and I heard that nurse say that it was too low to even register and that he had only given a very small amount of the medicine to me. I felt like I was dying. The doc asked me if this is how it felt when I had one of my "spells" and I said yes. After this doctor diagnosed me and gave the beta blocker to me and that didn't work, he did refer me to a neurologist. I insisted upon it because I told him the meds he had given me hadn't helped and if I had dysautonomia than a neurologist could treat me better and if I didn't have it than the neurologist could rule it out and treat me for something else. Well, all the neurologist did for me was treat me like a crazy woman. He did all the usual reflex checks and listened to my heart with the stethoscope, the usual stuff that has been done to me a million times. He never took blood, urine or did any other tests. He simply took my blood pressure with me sitting, standing, and lying down and asked me some questions. He seemed especially interested that I had some medical knowledge without any training and I simply responded that I had done a lot of research with books and the internet, like anyone would do with some unknown illness that had plagued them for so long. He seemed to imply that it made me a hypochondriac(sp?) that simply looked through books to find a disorder I liked and then claim it. He never said that to my face but I could tell he was thinking it. He then got a visitor in the room during my expensive non-insured visit, and proceeded to leave the room and converse with colleagues about some personal bullcrap. Then he came back and looked at a major rash I had all over my body that couldn't be explained and told me to go to a dermatologist. He proceeded to tell me he didn't think I had dysautonomia or any other neurological disorder but that I had just had a baby and I was under a lot of stress. He said patients with dysautonomia had low blood pressure, especially upon standing. He told me to come back in a few months if I still had problems and then maybe he would do some tests. He patted me on the back and I went home in tears. So, my question is, could dysautonomia be the right diagnosis even though my bp never registers as being low. They said it was low during the TTT but I thought that it was a possiblity that the automatic bp cuff hadn't been able to read it because I was moving my arm while it was inflating. Can people with dysautonomia present with high bp? What are the odds of having a false TTT? If it is dysautonomia, what type do I have? My symptoms seem to sound a lot like POTS. Any help would be appreciated. I know my symptoms are very similar to a lot of people here and I would really value if someone would share thoughts and personal experience with me.

Hello, all. I have just recently discovered this board and I can't tell you how great it is to finally know that there are people out there that are in the same boat that I am in. Please forgive me for the length of this post. My name is April Abbott and I am 26 years old. I began having "problems" when I became pregnant, 6 years ago, and my life has been a roller coaster ever since then. It started during my fourth month of pregnancy with very random bouts of being lightheaded and feeling flush. It only happened a couple of times before I contacted my ob/gyn and they did some basic bloodwork. I also felt that I might of had some palpitations during these spells, but only for a moment, so they did put me on a portable heart monitor for 24 hours and the results of that were pretty much useless, as were the results of the standard blood and urine tests. I was told that everything was normal from the heart monitor results but I never had any of my "spells" while wearing it. My ob doctor pretty much wasn't sure what direction to go in. She said it could be hormones but that if I wanted to go see a neurologist that she would refer me. The idea of having additional tests scared me and since it had only happened a few times and the baby checked out okay, I declined the referral and went through my pregnancy feeling spaced out and light headed and pretty much overwhelmed. I attributed it to pregnancy hormones and figured it would get better after delivery. The spells got worse and there were times I couldn't drive or even stand in line at a grocery store without becoming hot and light headed. I would have to stop everything, sit down for a long time and have someone drive me home immediately. I did come close to passing out one time and actually fell on the floor with the sides of my vision becoming dark around the edges. This actually happened at my appointment for an ultrasound but seeing as how all of the doctors and techinicans were complete morons, no one really checked it out thoroughly. But I had never actually lost concsiousness, which was always a huge fear of mine. About a week before my due date I developed pre-eclampsia. It wasn't actually found until my checkup(thanks to the idiot nurses that I talked to on the phone that insisted nothing was wrong, despite all the classic symptoms) and at that point I was only 2 days away from the official date and they did induce labor. The labor was pretty much a breeze for me, in terms of length and pain level, but after I delivered my bp actually began to rise. I was so swollen and was put on magnesium sulfate to prevent seizures. I felt terrible and began to grow very weak and scared. The mag sulfate made me feel way worse and I was kept in the hospital a total of 4 days after delivery. No one had sufficient answers as to why I wasn't getting better, but actually feeling worse. It was so depressing because that is where we spent Christmas Eve and Christmas Day. I didn't have the strength to even use a bed pan and had to have a cathiter inserted. I insisted on breast feeding and this made it much harder on me. The day I was to be released my bp was higher than ever. It was 190/118 after waking up from a nap, and this was while I was still lying down without moving. But I was released and went home a nervous wreck. Well, here I was with a new born baby to take care of and I couldn't take care of myself. I was put on complete bedrest for about a month and simply followed up with my ob/gyn to have my bp checked. I was told it would go down on its own after deliver after a few weeks. But after every appt. it just seemed to stay really high. This made me nervous and paranoid and I still wasn't getting answers. After coming home, I simply could not function. I was on bed rest so my husband had to take nearly a month off of work to take care of me and the baby. I stuck with the breastfeeding and that was so difficult, especially since breastfed babies eat once an hour. I wasn't getting any sleep, I was having muscle weakness, shortness of breath and felt light headed all of the time. The bedrest stretched into 2 months since my bp wasn't going down and the symptoms only worsened. I finally coaxed myself out of bed, despite my symptoms and mentally chastised myself until I was able to function again. I still felt horrible all of the time but my husband had to return to work and I had a baby to raise. Months passed and there were a few ER visits because of chest pain, trouble breathing and heart racing/palpitations. I was looked at like a crazy person and sent home after hours of waiting all night long in a waiting room with callus nurses. Even on the good days I felt so bad. My bp stayed high, my pulse rate stayed high, I was light headed all of the time and I never left the house. Other symptoms emerged such as muscle weakness/twitching, chills, insomnia, dizziness, frequent urination, palpitations, feeling "wired" and spaced out, unable to focus, sensitivity to light and sound, and many others I can't even remember. These symptoms were dramatically intensified if I became sick or sleep deprived. My little girl was about 9 months old when I finally saw a cardiologist. I thought that I might have mitral valve prolapse. After an echocardiogram, that was ruled out and he scheduled a tilt test. He tilted me around on the table for several minutes and it didn't cause a reaction. But when they administered the medication to speed my heart rate, it definitely triggered something. If I hadn't been strapped in, I would have collapsed on to the floor. My heart began to race and pound against my chest until it felt like it might burst. I was told that my bp dropped so low that the machine wouldn't record it. That was a terrible experience for me but I was finally told there was a name for my condition. Dysautonomia. I was put on a beta blocker called Lopressor and I tried that for several weeks, to no avail. I actually felt worse on the medication and that was my lowest point. I could not function at all during this period. I practically moved in with a relative during the day and stayed in bed, only sitting up to breast feed. I wasn't even sure if I believed the diagnosis that had been given to me since the medicine made me worse and the doctor never went in to great detail about what dysautonomia was. I was told basically that my autonomic nervous system wasn't functioning properly and that I might get better over time or I might not. At my request, I was referred to an endocrinologist and a neurologist for more tests, both of which were useless and terrible. I felt more confused than ever and my symptoms continued. I finally accepted that I would always feel like this and that the quality of my life would be terrible. I have dealt with symptoms off and on for years. However, for the last year I have felt fantastic. My condition practically seemed to disappear, only showing its ugly head every once in a while. Of course, I was told by other doctors and nurses that I saw that it was all in my head, or my favorite, "You have post-partum depression." It didn't matter if I was depressed or not, the doctors insisted that is what it was, even if the symptoms did start when I was four months pregnant and did not resemble depression. But, as I said, this last year has been great. Until recently. All of a sudden, I began having symptoms again, although they don't seem to be as bad. I continue to struggle but I continue to function and on bad days I just stay home. I am on no meds at all right now by choice. I have tried antidepressants, and the beta blocker, but the side effects seem to be worse than my condition at times. And I fear putting anything in my body for such a long period of time, not knowing what the long term effects of these medicines will be. I do also have slight hypothyroidism but have stopped taking my small dose of synthroid(just 50 mcg) and have no symptoms of hypothyroid at all. Of course, I never did have low thyroid symptoms to begin with, it was just determined because of blood work. And I was told it was very mild and didn't absolutely have to be treated with meds at this time. And now I have found this board. When I read the symptoms for POTS I could not believe what I was reading. Everything fits perfectly into what I have been feeling for years. I saw that a lot of you had pre-eclampsia and I see a lot of phrases and descriptions of this enigmatic disorder being written here that make my jaw drop because these are the things I have been feeling for years and no one else has understood. For example, when I feel really bad and weird on my bad days, I don't even know how to describe it to anyone. For years the only description I could give my husband was "I feel like I have been poisoned." Of course, he gives me weird looks and as hard as he tries, he doesn't understand. He has been supportive but no one can be completely understanding without being in our shoes. But today I read a post by someone that said "I feel like I've been poisoned." I was stunned because that is such an odd thing to say, yet, I have said it for years and I always get weird looks from my family. Well, I have taken up more than enough space and I am sorry. I just wanted to introduce myself and let you all know of my situation. I am so glad to see there are people out there than can completely understand and support me now. I hope to get to know you all and I plan on posting again soon with some questions, and maybe even some suggestions for others. At the very least I can offer my understanding and emotional support to all of you as we battle this together. April