melly4

Thanks, everyone, for your support and info. Kathy, I have not been given a formal diagnosis by the two doctors (psych and internist) that I was seeing before I moved. They were treating the anxiety symptoms and running tests to find a cause for the panic attacks. They must have checked my thyroid a hundred times!! I've lost a lot of weight. My son is also very thin, and we're both healthy eaters. I have irritable bowel and chronic migraines. My last visit with my internist was when he suggested that my son and I may have some form of dysautonomia. Our insurance kicks in down here on the 15th of this month, so I will be searching for another doc to help us. I hope we get lucky the first time. I went through several where I used to live before I found anyone who seemed knowledgeable.

Thanks for your input, Linda. After seeing a general practitioner for tachycardia and heart palps, he, too, diagnosed me with bipolar disorder because none of the anxiety meds helped me. He had initially diagnosed me with panic disorder. He then referred me to a psych doc to treat the "mania", and the psych doc told me I didn't have any mental illness, but anxiety from the symptoms I was experiencing. Like you, I felt validated. The psych doc told me to find a good internist, who tested me for everything, and after my son developed similar symtoms, suggested dysautonomia. But we just moved, so we're searching for someone else equally clever to help us. You also mentioned that you can never drop the mental illness label once someone tries to diagnose you with it, whether you have it or not. I had a head trauma and a cervical spine injury, and when EMS saw that I was taking klonopin, they put in my records that my diagnosis was anxiety. I had a hole in my head and almost broke my neck!! I also had to have my gallbladder removed, but only after being misdiagnosed twice because both docs decided the reason I was vomiting and in pain was due to anxiety. By the time I had it removed, the surgeon told my husband she was glad she took it out when she did or it would have ruptured!! Another guy I know, who has panic disorder, went to the ER one night with chest pain and was sent home because they saw he had been there before with an anxiety attack. He later suffered a massive heart attack!! I'm sorry you've suffered from the same ignorance.

Amen. My son has been given no meds despite his signs and symptoms. My docs just continue to give me any anxiety meds they can that either make me have really bad reactions or just don't help at all. I understand how frustrated you must be. I think that there is so much unknown in the medical field about the nervous system, and those that have problems are either treated as guinea pigs or completely ignored because some doctors just don't have a clue as to what to do. Hence, you hear things like "you just need to take it easy and destress your life" or "here's a script for xanax or paxil." I'm happy with my life; I just can't stand these bizarre, scary symptoms that no one seems to have a logical explanation or good treatment for.

I'm just curious how many people were told they had an anxiety disorder or depression before being given a dysautomia diagnosis. It's interesting, but I was reading in a physician's guide to rare diseases under "dysautonomia" and it listed the symptoms that so many docs today call panic disorder. Of course, there was no entry for "panic disorder". When I took my son to a cardiologist with a heart rate in the 130's and a BP swinging from 170/110 back down to 90/50 with near syncope episodes, the doc asked me if he had school anxiety from other kids. My son is home schooled!! I just about got up and left. That doc has since been fired!! I'd love to hear your stories. Thanks, Melly

Lisa, I'm sorry you have been through so much suffering. I just have to say that there are a lot of docs out there who love the anxiety disorder diagnosis. It means big bucks in prescribing SSRI's like Paxil, etc. I don't want to offend anyone who has been helped by these meds, but they made my symptoms a lot worse and actually caused me a trip to the ER. I've heard a really great internist refer to the anxiety disorder thing as the "cop-out"diagnosis for physicians that don't have a clue!! I wouldn't worry too much about it, just concentrate on your main diagnosis and treatment. I mean, don't we all have some degree of anxiety because of the miserable symptoms?!

Thanks to all for the support and info. My mother just came to visit today, and after talking, have discovered that we come from a long line of family members who suffer from some sort of dysautonomia or another. Even my brother and grandmother have issues. My mother, a cousin, and an uncle does, too. It's amazing. Thanks for all who sent doctors in GA. We hope to get help soon. God bless all and stay healthy, Melly

Thank you so much for this info. I have lived with these symptoms you described for several years, and docs either said they didn't know or gave me the "cop out" anxiety disorder diagnosis. The same thing is happening to my oldest son now, and two of his docs tried to say it was anxiety. OF COURSE we have anxiety!! If they tried to live this way, they'd have anxiety, too. My husband is a nurse, and I'm a lab tech. Neither one of us thinks my son and I have panic disorder. Otherwise, the SSRI's might have helped me. They only made me worse. And imipramine made my BP drop so low, I needed IV fluids!! And some docs don't want to listen or believe you. I wish they would put us on 24-hr ambulatory BP cuffs, so they could see what is going on. I take readings at home to show them at office visits, and they just ignore them. It's very frustrating, but I will try to be patient and search for the right doc and check out the books you recommended. Thanks for your help. Melly

Hello, everyone, and blessings to anyone affected by Hurricane Katrina. I posted back in July about my son, who will be 13 next month. We just moved, so I am just now following up on replies. My son had a pheo workup, including the usual 24-hr urine, which was positive for VMA, a cardiac event monitor, a head and an abdominal CT scan. The scans were negative for pheo. His month-long event monitor revealed sinus tachycardia, sinus arrhythmia, PVC's, and PAC's. This was done before we moved. I never heard back from the peds cardiologist, so I just asked for his records to be transferred to me to take to a better doc down here. Our insurance doesn't kick in here until Sept. 15th, so we're playing the waiting game. Just to let you know, as so many of you have posted, that I'm quite tired of doctors, too. And my husband and I are healthcare professionals!! My son, a well-trained athlete, lives with bouts of wildly-fluctuating blood pressure, tachycardia, syncope, and near-syncope episodes. What really upsets me, other than the fact that he is without diagnosis and all the docs seem to throw their hands up in the air, is that his pediatrician's medical records show that my son's BP has been recorded in the 95th percentile or above since he was 9. It was never addressed!! When he stands up, it gets very low. I have also had extremely low blood pressure all of my life, but recently it has been 80/50 or below at times and I am also starting to have tachycardia. I have had bouts of this before and was told it was panic attacks. I am currently on 3mg of Klonopin a day, and I am still having problems. I have lost 12 pounds in the last month (didn't need to) and my son can't keep weight on either, despite voracious appetites. We've both been checked for thyroid disease. I have also taken a low dose beta blocker in the past for the heart palps, but it really didn't help that much. If anyone on this website lives in the Georgia area, and knows of a good endo doc or internnist, please let me know. We, as I know so many of you, are desperate for answers that seem to elude most of the docs we saw back in SC. I have been frustrated for years about my own strange health problems, but now that my son has them (or a variation of them), I am even more determined to find a name and treatment for this illness. It's not in our heads!! We are otherwise very healthy. Also, if anyone else here has had dysautonomia of any sort run in their family, that would be of great interest to me. Sometimes it it wise to be armed with info before going to see your doc!! Thank you for letting me vent and for the support I received from my last post back in July. Melly

Melissa, Thanks for the reply. My husband and I both work in healthcare, but POTS is something we are both unfamiliar with, but if our son doesn't turn out to have a pheo, the symptoms might fit and be worth mentioning to his pediatrician. We're not too happy with his peds cardiologist. He promised a stress test, but we never heard from him again. His pediatrician is being great, though. My son is very cardiovascularly fit (does taekwondo about 12 hours a week--prior to us finding out about the fluctuating blood pressure). His pulse is generally around 70. He's very tall and thin. His pulse gets high when he stands up suddenly (he also gets very dizzy and sometimes faints). His pulse is very high when he has been standing up for any length of time. He's very intolerant of heat and sometimes gets low-grade fevers of unknown origin. VMA is vanillylmandelic acid, a breakdown product of catecholamines that they measure, usually in a 24-hr urine. It can be elevated for a number of reasons, not just pheo. This sounds awful, but I wish it did turn out to be a pheo, because he could be treated and his problems would likely go away after surgery. I understand from what little I know about POTS is that it is so difficult to treat. I feel badly for those who suffer with it. So, yes, his pulse is normal when he's lying down, but makes dramatic increases when he stands. I know I need to wait for these test results to come in, but afterwards, if he's negative for pheo, I will pursue having him see an electrophysiologist and an endocrinologist. I think there's still more to be researched, including a echocardiogram, tilt test, and some blood tests to rule out anything endocrine. I'm sure so many people here have gone through the test-after-test endless nightmare. Thank you so much for the information. It's been helpful. Take care, Melly

Hi, everyone. My 12-yr-old is currently being worked up for possible pheochromocytoma. His blood pressure is sometimes high, but sometimes it is extremely low like mine. When I read a thread from a pheo website about disorders that mimic pheo, POTS was mentioned. He gets extremely dizzy when he stands up and he fainted yesterday. His cardiologist has pretty much blown him off without anything more than one EKG, one blood pressure reading, and an event monitor, which recorded his tachycardia, which the doc calls sinus tachycardia. After the fainting episode yesterday, I chalked it up to orthostatic hypotension, which I knew he already had and can be common for boys his age. But I took his pulse while he was lying down and then while he was standing up. It went up more than 30 bpm. It was 115. His heart rate (resting) can go as high as 133. He is extremely physically fit, and we are going crazy waiting for test results from his pediatrician. He will have an abdominal CT Monday, and he is doing a second 24-hr urine. The first was positive for VMA. After his episodes, his feet and hands are cold and clammy. My question is whether anyone here with POTS has episodic high blood pressure in addition to their low blood pressure? And did a tilt test diagnose their condition? Thanks so much, Melly