melly4

My son and I both have the leg cramps and pain. I also have that problem in my neck. In addition to bananas, raisins have a good amount of potassium, if you can stomach them. Melly

Melissa, Thanks for your input. I definitely cannot take sudafed, from past experiences: tachy much worse!! But I understand what you're saying, as far as it can be helpful for some forms of dysautonomia. It's just that I'm so darned med-sensitive. I've had a lot of problems with all kinds of meds. But that's just me. And you are correct in encouraging Faithinspires' daughter to follow through with her referral to the psych doc. That was the best thing I ever did, because he was able to dismiss the whole anxiety disorder dx my GP at the time was giving me. In addition, he was able to diagnose and document the med sensitivity and prescribe klonopin to help me deal with the freakish dysautonomia symptoms while I was going through the 4-month wait to see an internist. Also, psychs have come a long way since the whole Freudian couch thing!! They are really very wise when it comes to medications. I know I probably sounded like I was anti-psychiatrist, but that's not what I meant. I'm just very defensive when primary care docs want to try to diagnose everything that can't be cured with an antibiotic or surgery as "mental illness"!! Melly

I hope you feel better soon, Nina. Melly

I also cut out any kind of stimulant and briefly took 10mg of nadolol. I had to quit taking it because it seemed to make my hypotension worse, but it did help reduce the number of heart palps. Getting adequate sleep and hydration helps, too. Melly

Mind boggling, isn't it? Some docs just insist on giving "activators" to folks who are med-sensitive and can't tolerate stimulants. I've never been able to take a decongestant, either. You would think most doctors could figure out tachy + stimulant= cardiac arrest!! Thanks for the encouragement. It makes me feel not alone that others have been through this, but at the same time, I feel bad for you all having to deal with dumb docs. Faithinspires, did you tell your daughter's stupid doc that her anxiety would probably go away if she quit fainting or feeling faint all of the time?! We've had all of the anxiety crud thrown at us from time to time, too. But I was fortunate enough to have a psych tell my doc that I most definitely did not have an anxiety disorder and that the anxiety was coming from the tachy, syncope, and heart palps. I hope your daughter has better luck with the new cardio doc. I'm so happy that we're seeing cardiologists soon. But if they start throwing sudafed at us, I'm going to run screaming to the nearest dysautonomia clinic!! Melly

Okay, I promised myself I wouldn't doctor bash if we had a bad experience at the new pediatrician today. I took my 13-yr-old son in so that he could continue to be "worked up" for his symptoms where we left off when we moved. And it wasn't all bad, so I can doc bash a little. He first saw a 4-year med student, who was amazingly bright and honed in on orthostatic intolerance issues as soon as she talked to us, saw the result of his event monitor, and that he was negative for pheo. What also helped was that it was one of those rare moments when my son was actually terribly symptomatic at the time of the office visit. His BP was high, he was tachy, and having heart palps that the med student could hear on auscultation. Without my suggesting anything, she was telling me that this was definitely some kind of orthostatic intolerance and we should get him to a cardiologist right away. It was then that I shared with her that I was experiencing the same, only without the occasional high BP spikes. It all sounded great. Well, then the resident comes in to put her two-cents' worth in. She said that all of these symptoms could be "normal" for some people. Yeah, sure. Then she said that, with my history, it probably was OI and to send him to a cardio doc. Fine. Then, the resident argued with me about why I didn't give him Motrin for pain. My answer was because I wanted it cleared with a cardiologist because of his BP spikes. She was afraid of the whole Reye's Syndrome thing and the baby aspirin. Like I would give my son aspirin if he had symptoms of a viral illness!! Of course not!! But I'm not going to give him Motrin when he's having one of his 170/110 BP episodes and watch him have a stroke!! Then the resident said that my son's cardiologist and my cardiologist would probably treat us with pseudophedrine. Sure, with tachycardia?! And my son's occasional high BP?! This dame's got her autonomic dysfunctions confused. We don't typically have bradycardia. My BP is awfully low, but I'm so med-sensitive that sudafed would most probably kill me. It's like OTC epinephrine. What was interesting was watching the reaction of the very bright med student to what the resident was saying. Even my son noticed that she was wringing her hands as if she wanted to choke the resident!! Anyhow, the "real docs" were consulted and set Dillon up for his cardio visit. So, we're both off to see our respective cardio docs at the end of the month. I hope we get good ones who don't confuse the different dysautonomias and their treatments. But, at least, we're not being looked at like we're crazy and/or blown off anymore. That is a major improvement!! Thanks for letting me vent and share, Melly

Morgan, sometimes you say the funniest things that just make my day when things are going wrong or I'm feeling sick, but you just told the saddest story, and I want to send you a big cyberhug. I'm so sorry you have been through so much, since even before your entry into the world. But I'm glad you're here to charm us with your wit. Melly

My son and I both get them. Melly

My uncle taught at Chapel Hill for a few years before returning "home" to NYC. He and my aunt loved it there. It is a beautiful, tree-filled city, as Dawg Tired replied. I visited there when they had there wedding, and was ready to move there. I live much farther south, so I'm used to dealing with the heat and the humidity (though it does make my symptoms worse). But Chapel Hill has a really peaceful atmosphere...and they know how to throw a pretty good party there too!! Melly

I have a degree in medical laboratory technology, and worked for 6 years until my symptoms got bad. Now, I am a stay-at-home mom of 4 children. I home school the 3 oldest. I love taekwondo, and will be going back after being out for 5 months!! Wish me luck. I've heard the preaching about how exercise is good for POTS, so I am taking a class this afternoon. My oldest son went back last night and did okay. He was really tired and was very tachy all night after the class, but he was glad he went. Melly

Congratulations and good luck!! You'll make some friends. That's a great thing. Melly

1.Melissa/Dillon 2.36/12 3.I was first told I had panic disorder, which was later dismissed by a psychiatrist I was referred to, along with an internist. The internist thought it was thyroid, pheochromocytoma or Addison's. He then mentioned dysautonomia when my 12- yr-old son became symptomatic, as well. I have recently moved and am going through the process of the continued "work-up", which involves the TTT. From the POTS criteria, my son and I both fit the bill. My current doc has labeled me as "hypotensive with PVC's and sinus tachycardia". My son is seeing a doc here for the first time tomorrow. His docs in SC, where we used to live, were worth- less, but his event monitor revealed sinus arrhythmia, sinus tachycardia, PVC's, and PAC's. He was also worked up for pheo at first and then thrown the anxiety crud at him before the docs got the results of his event monitor. We'll see what happens tomorrow. 4.Since we haven't formally been given a diagnosis, I'll tell you when we had the onset of symptoms. For me, 33. For my son, 9. 5.Macon, Georgia 6.For me, extremely low BP, tachycardia upon being upright for any length of time, blurred vision, dizziness, tunnel vision, "out-of body" sensations, shortness of breath, hyperventilation,heart palps,weak and sore legs, pooling of blood in my feet,intolerance of heat, cold, and exercise, tingly sensations on my scalp and lower legs, hypermotility of bowels, nausea, chronic migraine headaches, eye pain, visual disturbances (swaying and dots),vertigo,hypersensitivity to meds, frequent urination. I probably missed a few. This is why I feel like a hypochondriac when I go see a new doc!! My son has the same, except he has wildly fluctuating BP, going from extremely low to extremely high. 7.When I'm consciously keeping myself hydrated and not on my menses or ovulating, I feel better and like I can exercise or shop. But I never go anywhere by myself. Nor do I let my son go anywhere without a buddy who is aware of his situation, lest he has syncope. We always have aggravating heart palps. 8.Antidepressants, esp. SSRI's make me worse and once sent me to the ER. Nadolol was a toss-up. It made me feel more tired at first, esp.when trying to exercise. But my system gradually got used to it. It never made my heart palps completely disappear, but they did diminish. But even on a low dose, I always worried that my BP would drop more, so I quit taking it. 9.Lots and lots of gatorade, sometimes IV fluids, extra salt on my food, EXERCISE, klonopin, maxalt for migraines. My son was given imitrex for migraines, and I asked his former doc if he was crazy, because of my son's high BP. We're working on finding something for his migraines and BP fluctuations with the new doc tomorrow, I hope.

I hope you feel better soon. It's also been my experience that ER docs are limited in their knowledge about anything other than emergency medicine. Thus, the blank looks when you mention something like POTS. And with the peds ER, the docs were also very limited in knowledge about emergency medicine!! I had a resident and a peds cardiologist tell me that an oversized BP cuff will cause a falsely high BP reading, when, in fact, the opposite is true. An oversized BP cuff will cause an erroneously LOW BP reading. I had taken my 12-yr-old to the ER because his BP was 170/110 and his heart rate was 130. They sent him home because they couldn't believe a tall, skinny kid could have BP that high and thought his heart rate was normal for his age group. Yeah, right. I honestly believe sometimes that unless you're having a stroke or a massive MI, some ER's are useless. But, before I'm accused of doc bashing, I will say that when I worked as a lab tech, I knew some wonderful and compassionate ER docs. They do exist. I'm sorry you are having a rough time. I agree that you should push fluids, and, please, get this checked out by a competent doc, just to make sure it's POTS-related and not the beginnings of cardiovascular disease. Keep us posted. Melly

I don't have anything to add, because I'm ignorant to the disorder, but I wanted to tell you I'm glad that you finally know what is causing the pain and that I'm sorry that you're in so much pain. I hope that your doc fixes this soon. Melly

You're a very kind-hearted person not to yell at that man, but he deserves an education in that there are many forms of disability, some which may not be physically recognizable. Maybe you should write a letter to the manager and share your experience so that it doesn't happen to someone else or YOU on your next visit. Maybe, then, he'll have the chair ready for you when he sees you coming. I'm sorry you experienced this. I hope tomorrow is better. Melly

Congratulations!!!

Curiously, my mother was diagnosed with hypoglycemia when she was my age. She was having dizziness and syncope. She still has problems. In fact, I had to rush her to the ER this year after she had a "spell". My doc drew a fasting blood glucose on me when I was in there last. I assume it was normal. My BP was not. Finette has a good point about the timing of meals in relation to planned activities, because I was definitely eating on the run Saturday when I had my bad episode. Melly

I am still "under investigation", also. But I truly believe that mine and my son's symptoms started after a bout of fifth's disease ( caused by human parvovirus). It's just my theory, not proven. Melly

I had major problems with the SSRI's, which led a wonderful psych doc to whom I was referred for "panic disorder" to send me to an internist, because the psych doc said my symptoms were suggestive of something else, that I didn't fit the mold, and that my anxiety was being caused by the "something else." He also said if I had panic disorder, the SSRI's would have helped me. I swear, my former GP tried me on every single one of them. Paxil earned me a trip to the ER. Zoloft almost did. All of my symptoms got worse. What is even greater, is that I was given imipramine (not an SSRI)at one point. Imipramine can cause BP decreases!! Was that ever fun!! It took me days of IV fluids and gatorade to get over that one. I don't have depression, so I'm sorry I can't help you there. But I take Klonopin for the anxiety caused by my irregular heart beats, etc., and it really helps me deal with them and the other unnerving symptoms. I know the benzo's get a bad rap sometimes in the medical community for being "addictive", but I have taken them for long periods of time and been able to stop taking it (when I'm feeling well or pregnant and breastfeeding) by tapering off slowly with little trouble. Whatever you and your doctor decide, I hope you get some relief. Melly

IThomas, Poor thing. You went through it twice?! I will take your advice and bring along my RN husband (yes, he's a male nurse, for those of you who are "Meet the Parents" fans!!) But if he's not available, I'll consider bringing along my very big and protective dog, Toby!! But seriously, I'll take it into consideration that there's a reason for administering the isuprel, like Poohbear suggested, and it may be essential as to an accurate diagnosis and treatment. Dawn, I,too, insist on carbacaine when I've had moles removed and my recent hand surgery. No more epi for me, unless it's absolutely necessary. The slightest amount makes me see stars and then black out!! Tachy is no fun. Severe tachy is a nightmare. Standupsitdown, As a lab tech, I know that docs are sometimes ignorant to how tests are run, etc. I will be seeing my GP prior to the test, so I will ask him what he has specifically ordered with the TTT, what the facility's protocol is, and quiz him in a non-threatening way about dysautonomia in general. Pick his brain, so to speak. See if he has one!! He's been great so far, and acted like he disagreed with the panic/anxiety disorder crud that's been thrown at me. Of course, as most of us know, that can change at a given moment. Melly

Thanks, everyone, for the tips. Sounds like I need to become a "grazer" on some high-calorie, salty snacks during the day. Maybe it's not going to be as hard fitting it into my schedule as I think. I don't want to go through another day like yesterday. It was my son's birthday and I was trying my best to feel better and celebratory, but all I wanted to do was fall down in the bed!! Ariella, that's hilarious about flying off the mountain with the wind!! I hope you don't, but I can relate. My brother sets a place for me at the "kid's table" at family gatherings because I'm so little!! Melly

I think I have read here that some people with POTS experience drops in BP following eating? I have also read on some medical websites dealing with POTS that eating small, frequent meals can be helpful. Yesterday, I went birthday shopping for my oldest son and started feeling rotten. I kept feeling weak in the legs and like I was going to pass out, out-of-body, etc. I kept having to go sit down somewhere. Anyhow, I went home and ate lunch, still felt bad, took my BP, which was 74/44. After dinner later that night, I got similar results, 80/50. Is this because of being on my feet for a long time, eating a big meal, or a combination of both? I don't know how I could eat small, frequent meals all day long, with 4 kids to take care of!! Also, I'm trying to gain weight, so I typically eat lots of calories at one sittting when I have the time. I thought that would help me feel better. Maybe it's making me worse!! Any suggestions? Melly

Morgan, good for you, not for having abnormal labs , but for standing up for yourself and continuing to look for answers to your symptoms which YOU know are not normal, but some dr.'s for some reason think are part of some mental illness!! You should do exactly what you said and send him a copy of your lab work concerning the pituitary values. And, yes, tell him how to properly work up a patient, and bill him for your consultation!! I hope this is nothing serious, but more of an aggravation and an explanation as to what is making you feel bad. Have you had a CT or MRI of your head? That was one of the first things my former internist I had (before I moved) ordered for me based off of my symptoms. Pituitary tumors can cause all sorts of symptoms, and can be very tiny and difficult to find. My CT was negative. These tumors can be treated/and or removed fairly easily, if that's what it turns out to be. So don't be scared. I am so happy you are getting some answers and are feeling spunky enough to feel like telling the psych jerk off!! Melly

Yikes!!I'm back to being nervous again. My husband, a cardiovascular ICU nurse, told me they used to use isuprel in his unit several years ago, but quit due to patients having really bad tachy and even fibrillation episodes from the drug. Of course, the patients he cares for are the worst of the worse, as far as heart conditions go, but I know how I respond to epi, which is what they use in his unit now. Oh, brother!! I understand that from eveyone's replies here and some POTS research on my own why this might be necessary during the course of the test, like Pooh suggested. My son and I both have a lot of premature beats, and I am so med senstitive. I can't tolerate stimulants of any kind. Thanks again for the advice. I'll certainly ask my doctor if the isuprel is necessary and try not to be a baby about it if they do decide to administer it. But I'll probably panic when I know it's coming!! You guys and gals are great. Thanks so much for the support. Melly

I wish I had something to offer in the way of advice or experience, but I really don't. I suffered a c-spine injury this summer and have occasional pains and stiffness in my neck, but I haven't experienced the numbness in my legs, only the weakness that Corina and you are talking about. I have the numbness on one side of the face and the blurred vision and spots, but I've always assumed they were auras, because I usually get a migraine right after. Good luck with your appt., and I hope your dr. gets to the root of your problem and how to care for it. Melly