melly4

Hi, Ernie. In response to the problems with menses and ovulation, I, too, suffer a great deal more those times of the month, as I mentioned. When I was breastfeeding, my GP put me on the progestin-only pill. Seems like I felt a lot better at this time. But, then again, I was breastfeeding, and prolactin can be very relaxing. I had talked to my former internist before I moved about trying to take the progestin-only pill again to see if it helped. I may give it a try when I see my new doc. I'm at the point that I'll try anything that sounds reasonable. I could never take the estrogen pill, because it made me crazy and all of my symptoms worse. But I did have side effects from the progestin-only pill, too; in the form of spotting every couple of weeks. Kind of aggravating. Keep me posted as to what you and your cardiologist decide. Take care, Melly

Hi, Lauren. I am so sorry you are having such a bad time and that the ER was useless, but that has pretty much been my experience for me and my son.My menses also seems to make my symptoms much worse. My BP loves to drop to the 70's/40's and I am left in a reclined position drinking gatorade with hopes it will go up. My heart rate goes from brady to tachy, also, but mine has never made it to the 200's unless exercising. You poor thing!! I hope you get some help soon. There is no quality in life for what you are going through. Hopefully, you will find someone more knowledgeable in WA. Hang in there!! To April: I live in Macon, GA. Where exactly is Dr. McConnell and what kind of doctor is he (specialty, I mean)? I'm seeing a new internist Monday, but as I've posted, I have no idea what to expect: ignorance or a thorough understanding of the wonderful world of dysautonomia!! Depending on what I go through Monday, I may be looking your doctor up. Thanks!! Melly

Hi, April. Fifths disease is a predominantly childhood illness caused by a human form of parvovirus. There's another parvovirus that infects puppies, and can be fatal to them. The human form causes a characteristic "slapped cheek" rash on the face and a lacy rash on the rest of the body. The rash lasts several days and their may be a mild fever and general malaise associated with it. The rash can reappear for months after the initial infection, particularly after sun exposure. Outbreaks seem to occur in cycles of about every 4-6 years, and most often occur in the spring. For adults, the clinical picture is slightly different. There isn't as significant a "slapped cheek" rash, but there is the faint lacy rash on the body. There is fever, horrific pain, stiffness, and swelling in the joints, and the general malaise that will leave you bedridden for a week. When I had it, I couldn't climb my stairs because my knees wouldn't bend, and I thought I was going to have to have my rings cut off my fingers because my fingers swelled so badly. I got it before my kids did, and I seriously thought I had rheumatoid arthritis until my oldest son got the "slapped cheek" rash!! Anyhow, it is notorious for causing autoimmune reactions in patients after the initial onset of the disease. I've always been curious as to whether this disease caused my troubles, because the strange symptoms of IBS, heart palps, tachy, dizziness,etc. began after my bout with fifths. Sorry, if my lecture on fifths disease was long and boring!!

Hi, everyone. I have read so many posts here where people have had symptoms of dysautonomia following a viral illness and tick-borne illnesses. Has anyone developed symptoms after having a bout of fifth disease. My oldest son and I, and possibly my youngest son, have been symptomatic ever since we caught fifth disease 3 1/2 years ago. I have been very suspicious that this has been the root of most of our troubles, and have explained that to doctors I have seen. I know that fifth disease, caused by a human parvovirus, has been linked to autoimmune illnesses. My internist actually thought I might have had reiter's syndrome, because I had arthritis for so long after having fifth disease. Reiter's usually disappears a year after its onset. My symptoms just keep getting worse. Just curious. Thanks, Melly

Lisa, you are such an inspiration to me!! What a great idea to keep a journal of symptoms, BP and heart rate readings, and meds and their effects. I think this may help me when I see a new doctor Monday. I've jotted down BP and heart rate readings, but I've been on so many meds and had such terrible reactions to some of them, that it's sometimes hard to remember which one did what. I am going to follow your cue and make a list of symptoms, meds, reactions, etc. that I do have memory of and take them with me Monday. I think it will do one of two things: either make the doc think I'm a hypochondriac or it will help him to help me by seeing the "big picture". I actually kept a list of BP/heart rate readings and symptoms for my oldest son recently and took it with him to see a peds cardiologist. It didn't go over too well with him. He rolled his eyes when he saw me pull out the list. He turned out to be a real jerk, and actually got several complaints to the hospital system from other folks besides myself about his style of practice (or lack, thereof). Anyhow, I'm sure any doctor worth anything would really appreciate a patient who keeps thorough notes about their symptoms and meds, etc. Good job!! Melly

P.S. Maybe I'll faint in his office and he'll get the idea. Or, perhaps, his nurse will faint when he/she sees how low my BP is, and they'll faint!!

Thanks, everyone, for the excellent advice. I think I just needed some encouragement. I've been through the fight before and ended up with a really great internist, who spent a lot of time and effort on my case. But now that I have two sons who are having seemingly related issues, I am finding myself very fragile emotionally. And that's just not like me at all. I'm typically very proactive and confrontational with doctors who try to treat or diagnose something they don't have expertise in, especially when it comes to my children. I definitely don't want to be on the defensive, especially considering that my 6-yr-old is possibly facing kidney trouble and we are waiting for lab results. I, personally, have had a psychiatrist rule out any sort of psychiatric condition as part of my problems. He has stated that I have anxiety because of the symptoms I have which are related to some other medical condition. He wasn't sure what it was, but encouraged me to fire my GP and find a good internist. The internist mentioned dysautonomia right before I moved. My 12-yr-old son's cardiologist was a lazy jerk (excuse me) and didn't want to deal with him, probably because he was inexperienced. But he did have my son wear an event monitor for a month, and we got the results back after we moved. It showed sinus tachycardia all over the place. So, no, we haven't been anywhere "special", but I feel our records speak for themselves that this is not purely anxiety, only a cause of it. I am planning to take some dysautonomia info written by a doctor who suffers from it as back-up when I go to my appt. and feel him out about seeing my oldest son. My younger son with the possible kidney trouble has been promptly referred to a specialist. So, thank you all again for your advice. It has been invaluable in making my "game plan" for Monday. I also feel better and stronger. Like my husband always says, "doctors work for the patients, the patients don't work for them." I'll give this doc the benefit of the doubt, explain my symptoms, and listen to what he has to say. If I don't like it, I'll move on. I'll keep you posted, Melly

Hi.I have moved from SC to GA 2 months ago, and now am faced with seeing a new doc. I had a really great internist in SC, but only after going through several very inconsiderate and undereducated docs. I went through the same with my oldest son, and we still haven't found a doc for him. We've both been through the "anxiety disorder" copout diagnosis, like I've read that so many of you have been through. And, as you know, it's a pain to get that removed from your records, and it stays with you and causes you misdiagnosis and discrimination when you have emergency medical issues. I've been told I had anxiety-related tummy troubles, when it turned out to be my gallbladder. I am now fighting my insurance company because I had to be taken by ambulance to the hospital after my head got slammed and pinned between a large couch and the side of a truck. The paramedic asked me what meds I was taking, and when he saw that Klonopin was one of them, he noted "anxiety" as my diagnosis, and the insurance company assumed that's why I called an ambulance and won't pay for the service. Anxiety has nothing to do with a cervical spine injury and a large scalp contusion!! Anyhow, I'm seeing a new internist Monday, and I'm so scared that I'm going to end up with another condescending doc who thinks I'm a nutcase. Obviously, he'll have records from my other internist, but sometimes doctors don't care what another doc thinks. And then he'll see I take Klonopin as one of my meds and assume I have anxiety as a primary diagnosis. I don't mean to "doctor bash", but I know you all have probably been there. I would really appreciate any advice from anyone who has been in my shoes and had to start over with a new doc after leaving a really good one. Do I tell him everything I've been through, including the misdiagnosis after misdiagnosis? Or do I let him start anew? He's supposed to be wonderful, the kind that calls you at home to check on you. I may be in for a big surprise, and find that he's understanding and knowledgeable. I hope so. Thanks for letting me express my fear, and any advice is greatly appreciated. Wellness to all and safety to those in the path of Rita, Melly

Wow! What a loaded question! I've found that this seems to be a very touchy subject here, and rightfully so for everyone. For those who can't lose, it's frustrating. For those who can't gain, it's frustrating. I read something on a website written by a doctor who suffers from dysautonomia, and he explained, as many people here have, that dysautonomia is a myriad of symptoms and conditions. Everyone is different, although many of us share a lot of the same. As far as weight goes for me, I am 36, have had 4 children, am 5'6", and a size 0. I keep losing because of the IBS symptoms, I guess? Who knows?

Thank you, Gena, for the advice about the dysautonomia clinic in Birmingham. I will definitely check into that if we can't find anyone experienced around here. We just moved here, so I really appreciate doctor referrals. As far as ER's go, I try to stay away from them unless things are really out of control. When we were still in SC, I took my son to the Peds ER with a BP of 170/110, and he was totally ignored!! Our instructions from his pediatrician was to go if his blood pressure was 140/80 or above. The pediatric care there was really poor. They didn't even have the setup to do 24-hr ambulatory BP readings. Isn't that pathetic?! Things seem to be much better here thus far.

Hi. I'm sorry you're facing surgery. I had a lap chole back in 2002, and it was the best thing I ever did, also. After being misdiagnosed twice with anxiety-induced reflux issues, I knew the pain was way too intense and that it was probably gallbladder, even though I didn't "fit the profile" for gallbladder disease. I fired my GP and it was diagnosed through another doc and removed immediately. The surgeon told my husband I was lucky I didn't wait any longer. I don't mean to scare you, but the wife of my brother's best friend was afraid to have her gallbladder surgery, and kept putting it off. Her gallbladder ruptured and she spent 6 months in the hospital having reconstructive surgery of her digestive organs damaged by the bile and received numerous blood transfusions. She is fortunate to be alive. Don't ignore the symptoms or your doctor's advice, but by all means, if you feel uneasy about the diagnosis, get a second opinion. I know facing any surgery is scary, especially the anesthesia part, and I debated up until the day of the surgery whether I would go through with it or not!! I did really well, and I'm grateful that I went ahead with it. i don't know how bad your symptoms are or how often you experience them, but I wouldn't wish the pain and daily vomiting that I experienced on anyone!! They will load you up with fluids before surgery, and I know you will do just fine. I was back on my feet in a couple of days. Please take care of yourself, and let us know what you decide so that we can be thinking of you when (and if) you have the surgery. Melly

Finette, thank you for the kind words and for so eloquently putting into words what I meant to say. Yes, the autonomic nervous system and the endocrine system are very complex. What makes matters worse is that disorders of any system in a clinical setting do not follow the picture-perfect "textbook" definition, even in well-known and well-studied medical conditions. It takes experience and an open mind for a physician to take into account all of the variations of medical conditions and how each patient will respond differently to various treatments. I'm sorry you feel as if you are losing the battle "3-0", but you are trying to educate yourself like so many of us, so you are heading in the right direction. I wish the best for you and your 16-yr-old. It's so frustrating when it's happening to your child, as well. I found out yesterday that my 6-yr-old's BP is out of whack, just like mine and my 13-yr-old's. I just wanted to cry at first, but then I realized how fortunate I was that the new pediatrician was top-notch and immediately referred him to a specialist. How refreshing!! My oldest son's BP issues were documented, but never properly worked up for over 3 years. I've decided to be positive, and that is helping me to help them and to stay well myself.

Steph, I don't think my "way of thinking" is what it came across as. I have gone through the whole anxiety disorder misdiagnosis, and I certainly don't feel ganged up on. It's okay. I did not mean to suggest that any of us have an anxiety disorder. I have spent the last 7 years of my life trying to lose that tag that ignorant doctors left me with because they didn't have a clue to what was really going on in my body. Anxiety and an anxiety disorder are completely different in the context that I was mentioning. When my heart starts flying or I'm having a day where I'm having numerous palpitations, I feel anxious. That's not the same thing as PTSD or any of the other anxiety disorders that so many physicians will try to label you with. And I refuse to let my son be labeled with them. So I know exactly where you are coming from. I am also trying to lose that stygma. I was only saying that certain hormones released with certain autonomic dysfunction, whether anxiety-stimulated or not, can and will make people lose weight. I know that my son and I have autonomic dysfunction. What I am wondering, is if the anxiety caused by the dysautonomia symptoms are causing us to lose weight or if the dysautonomia itself is causing us to lose weight. As you must have read, so many of us have varying symptoms. Some people gain, some people lose. I am a laboratory scientist by trade and like to ask a lot of questions about cause and effect, and I love to argue with stupid doctors like the ones I'm sure you have associated with. I did not mean to imply that anyone on this forum had an anxiety disorder!! That is definitely NOT "my way of thinking"!!So, please don't misinterpret what I said.

I am so sorry that you are going through this. It's simply ignorance. I had a GP who insisted that I had an anxiety disorder, even though he saw the abnormal EKG's in his office and that none of the anxiety meds helped me, only made me worse. In fact, I ended up in the ER because of an SSRI. But he still insisted, and sent me to a psychiatrist. But, luckily, the psychiatrist didn't believe for one minute that I had an anxiety disorder even though I had anxiety caused by the other symptoms I was having. This psychiatrist advised me to find another primary care physician, and that's just what I did. And the internist I ended up with advised me to never bring up anxiety when dealing with health issues, because he said it was an invasion of privacy and would be a cause for other docs to overlook serious problems not anxiety-related, such as what happened to me when I had gallstones. My GP had told me that it was anxiety-induced reflux. Two months later I was in the hospital having my gallbladder removed, and just in time!! Is it possible to remove the "crackpot" doctor from your care team? Perhaps doctors with more experience with POTS will realize that this doc's diagnosis is incorrect, look past it, and send you in the right direction. I hope this gets better for you. How frustrating!!

I also hate to disagree. But anxiety can definitely make people lose weight. Any excess release of catecholamines will cause weight loss because it revs up metabolism. That's what my son and I live with every day, and that's why we were initially thought to have pheochromocytoma or thyroid dysfunction (hyperthyroidism). When the symtoms started, the weight loss started. And my son will be 13 next month. He shouldn't be losing weight. But I see Kathy's point, some people will gain weight when they're under stress. My mother is one of those. She can't lose weight no matter what. She has hypothyroidism, takes her thyroid meds, exercises, and barely eats anything, and she has been overweight most of her adult life. It is so aggravating and depressing for her. So I sympathize with you, Kathy. I guess we just all have some variation of symptoms.But I'm glad you are enthusiastic about exercise, Kathy, because I think it's important for us all. I wish you could give me some of your weight, and then we'd both be happy!!

India, I have the shortness of breath, too. It drives me crazy, and then I think I hyperventilate to compensate. I've never smoked, have been an avid athlete except when my symptoms get too scary and I can't move off the couch, and I have no heart disease. So I can think of no other reason for me to have s.o.b. Have you tried deep breathing exercises, like belly breathing, etc. ? It helps me when I have a particularly bad episode. The exercises keep me from hyperventilating, which makes things worse.

Chad, I'm glad you checked out with nothing life-threatening, and I hope you start feeling better. I'm new here, but I've been around the track with many stupid docs and some good ones. And I've come to the conclusion that autonomic dysfunction causes anxiety, and the combination of the two causes weight loss. I have lost 18 pounds that I did not need to lose in the last 2 months. I eat like a horse. My son is the same way, and he is also gotten thinner since his symptoms started. If I lose any more weight, I'll have to start shopping in the pre-teen department. So maybe the weight loss is a part of the POTS? I don't know, but that's my educated guess. Take care of yourself.

Hi, Becky. I'm so sorry you're going through this. Do you typically have a lot of trouble with ear infections and vertigo. I am also fighting a double ear infection right now, on three meds for that, and I hate taking new meds, because I am so sensitive. I take Klonopin on a regular basis for the vertigo and shakiness that docs seem to think is anxiety, but I know is a by-product of low BP, tachy, and heart palps. Anyhow, I go through the ear infection/vertigo misery every fall, when my allergies are at their worst. I do hope you fell better soon. And maybe, if you pass out in court during your disability discrimination hearing, that will be a good thing. Then they will see first-hand how much you suffer with this, and you will win your case!!

Rita, seems like I tried salt tablets in my late teens and early 20's. I'm new here, don't have a doctor familiar with all of this here yet, and I'm clueless to the compression hose thing. Please enlighten me!! Kristen, we sound similar. I feel better during a good martial arts workout, except for the heart palps and occasional racing heart, but it's nice to have the BP go up to a comfortable range. Unfortunately, afterwards, I'm so shaky. It's miserable, and I take klonopin for it. But I'm afraid all that does is "put a bandaid on the problem", not fix it.

I took nadolol for the tachy and heart palps for a while, but I couldn't handle the blacking out, my BP was so low. My 13-yr-old has the problem with his BP spiking really high and then dropping low like mine. He blacks out a lot. Both of us have the tachy and heart palps. We're searching for a doctor in this area (Georgia). I've wondered how they would treat my son, having both high and low pressure fluctuations in the same day?!

I have always had really low blood pressure, but it seems to have gotten worse over time. I was just wondering what blood pressure readings you all have gotten before treatment? I seem to run in the 70's/50's to 90's/50's. The days I'm in the 70's I can't make it off the couch!! I drink water, juice, and gatorade all the time, but it doesn't get any better.

For Ithomas521, Can I quote you with the "some physicians have an insufficient brain in the head problem"? I'd love to say that to some of the docs that I've encountered that have charged me and my son with having anxiety as the only cause of our problems!! I like to call anxiety disorder the "lazy doctor's diagnosis".

Lynna, I'm so sorry your son has had such a rough time. My son also has heart rates in the 130's when he's been on his feet any length of time. His BP goes all over the place, but when it gets low, he sometimes faints or else he feels like he's going to faint. The peds cardiologist he saw before we moved thought this was normal!! Yeah, right. My BP just stays low all the time and my heart rate goes from low to high upon standing. We're just counting down the days until our insurance kicks in here. Then I'm afraid of going through the whole "search for a sympathetic and knowledgable doctor" thing again. I found one for me before, but never for my son. The cardiologists and internists at the hospital system where we used to live would not see peds patients, and there was only one peds cardiologist!! So we were without hope there. Things look different down here in Georgia. My former internist told me not to mention anything about anxiety to new docs, even though we all know we do have anxiety from the wonderful episodes of tachy and heart palps!! I think he gave me great advice, though. I don't want to be tagged any longer with all my problems being attributed to anxiety. And then they'll say that my son's are anxiety,even though he's really laid back, because "anxiety is hereditary." Ha!!

Hi, Chad. I'm sorry you're experiencing these symtoms and facing a possible hurricane. I'm originally from Charleston, SC and was on the peninsula when Hugo came through. I'll never forget it, and still get anxious when the wind blows!! My heart goes out to you and to the victims and refugees of Katrina or any other storm survivors. As to your question about the heartbeat in your stomach, it may be due to esophageal spasms. Sometimes they mimic heart palpitations. But if you still feel very uneasy about it, tell your doctor and have it checked out again. You are your best advocate. But try not to worry about it too much. I've had that sensation before, and it turned out to be GERD-related. Take care and be safe, Melly

Hi. This wasn't one of your options, but I applied for disability back in April, and it's still under medical review. They initially told me 90-120 days, but maybe it is taking longer since I moved to another state during the process. I, too, had detailed documentation from several physicians and they still made me have an exam with a psychologist, not even a doctor!! There goes the "you must be crazy" thing again!!But he was really nice. I'll keep you posted. I'm sorry for those who have had a hard time. I hope I don't have to go to court.