UnicornIsis

I would reccomend Dr. Abdallah too. If you call, explain right away that you are a POTS patient because he's a pediatric cardio, but he treats older people (our age and older) who have POTS. I'm a member of DYNA also, and many of us there see him. People come from all over the country to see him and some have come from other countries just to see him for POTS and NCS. If you don't want to see him, or he won't because you're too old, then explain again that you're a POTS patient and ask him for a reccomendation for a POTS doc or a doc that can treat you for it in your area. If you can't talk to him, try talking to Allison Greenleaf, his resident. She's really good!!!!! And she's learned a LOT about POTS from him really fast. I hope this helps.

Hey everybody, It's been a LONG time since I've been on here. But I'm down lately. Spent time in the ER last week. And I'm wondering if anybody can answer these questions I have. I had an irregular HR at home when I first started having trouble and the whole time at the ER. The moniters kept showing PVC -- Pre Ventricular Contractions but it kept happening for a while and then would go away again. It took them a while to get it on the EKG. What exactly does this mean? The ER doc was a cardio, but he was worried about it and sent me to see a cardio the next afternoon even though I had an appointment with my regular one 4 days later. The cardio the next day said there wasn't much he could do since it wasn't happening right then, but if what the EKG showed was going on all night, then it was a problem. I'm just wondering and going okay what's going on here, do the docs even know? Anybody with any experience of this? Second question, I had never thought to question this before for some reason. When I pass all the way out, not just pre-syncope, I stop breathing and my heart stops. Nobody seems to know why. I was looking things up and ran across Long Q T Syndrome. But I talked with Dr. Abdallah's assistant Allison today she said my chart and records didn't show any indication of this before. I'm not seeing Dr. A. at the moment because I've moved, but he's still following me and I'm still supposed to call him or Allison with problems. From what I've read and been told, apparently my heart isn't supposed to stop with just NCS and POTS. I have NCS primary and POTS secondary. So any ideas on what causes my heart to stop when I pass out? Also any ideas on what causes me to stop breathing when I pass out? Any ideas about where I should go to try find this out? Or what may cause it? Thanks for any help and suggestions. And thanks for reading this!

You've all made good points and given good advice. I know this isn't REALLY something to wish for, but I wish there were more of us with this so we could all get more information/experiences, help and support from each other. Unfortunately moving closer to family isn't much of an option for us. My husband is in the Navy and plans to make a career out of it. There's no chance either of my parents can retire anytime soon and neither can his dad. We're in north Florida. My parents are in Virginia and he has family in middle and southern Florida. Because of me being sick we'll be limited to the number of bases we can go to, all US, but depending on what category they make me depends on whether is Major U.S. bases or the 5 main Navy bases in the U.S. So we're going to be moving some most likely, but we don't get much of a choice as to where we move, at least not moving near family or anything. I am not able to work. I'm doing pretty well and have been for almost a year now. But I just don't have the energy or constant level of doing well to work. Also I'm not allowed to drive so that's kinda hard too. The other concern is that the neurological muscle disorder I have, tentatively diagnosed as Dystonia causes me to lock up and I don't have control, similar to petit and grand-mal seizures, but I get to be awake for it all. Right now I'm not allowed to be left alone, doctors orders. Someone suggested adopting or fostering. I don't think they let me do either because of being sick. I haven't looked into it, but I'm pretty sure they'd say no. I'm kinda holding off on finding out if they would let me because its kinda a last resort hope thing. We don't think I'll have any trouble getting pregnant, my family is EXTREMELY fertile, that's why we're taking 3 precautions right now. Y'all are right. I'm trying to decide if it's really fair to the child/children to have a sick mom and possibly pass on "active NCS/POTS" to them versus the emotional pain of not having a child as someone else said it perfectly. We've found out that both sides of my family have a history of NCS and POTS and Dr. Abdallah said that's probably why I got it as bad as I did when the CMV-MONO triggered it. My brother has mild signs, and so do some other memebers of my extended fmaily, but they're all what I call "non-active", its not enough to actually give them trouble or anything like that. Thanks for listening everyone and for giveing your opinions and advice. I really do apperciate it.

Hello, I have searched back posts on here and haven't found much on what I'm asking. I may not being looking in the right place or searching on the right terms. I recently got married in September. Before the Wedding any time anyone asked me about kids I told them what I had been told from the start "get pregnant and stay pregnant" and "being pregnant is the best thing you can do, as long as you're pregnant you'll be healthy". I believed that. My cousin had kidney problems and was getting ready for surgery and got pregnant by accident. She went into TOTAL remission while pregnant. A little less than a year and 1/2 after her daughter was born she got just a sick as she was before. After our Wedding I started actually "thinking" about having a child. I've ALWAYS wanted kids, lots of them, and always been around them. I'm from a large extended family and worked in daycares in high school. I'm the best I've been since I've been sick and my meds are straightened out and have been the same for a bit over a year now. I know that right now I can not take care of a child if I were to have one. My question is this: for those that have had children AFTER being sick with NCS and/or POTS, after giving birth, were you able to take care of the child on your own, or you and your husband/wife able to take care of the child, without help? I mean were/are you able to take care of your child/children even years later on your own, without say your mom/his mom/a sister, or someone else always there to help you? Also I know some get better during pregnancy and some don't. For those that do, how long did it take for you to get sick again afterwards? Or did you not get sick again afterwards and how long has it been since you gave birth? Right now my husband and I have decided not to have a child and are taking 3 measures of precautions not to because I'm not healthy enough to take care of a baby without help from someone other than him. If I do get that healthy while we're both young enough -- say less than 40 when it becomes risky -- then we will decide at that time if we want to try. This is VERY HARD for me. I have cried many times over this and still am and I've only been thinking about this since early Novemeber. Thank you all for reading this and for any replies you give.

Just wanted to say hi and welcome! I'm one of the exceptions in this case. I DO take antibiotics before dental work becasue I have Mitral-Valve Prolapse/MVP. If you feel more comfortable taking the antibiotics it probably won't hurt you. Get your specialist to talk to your dentist, or change dentists if you want to. I would suggest going to see a cardiologist to make sure you don't have any other heart problems that would warrant the antibiotics and to have the cardiologist talk to your dentist to let him/her know whether or not you really need to take the antibiotics. The most important thing, I think, is for you to feel comfortable at ALL times. Really, the same thing everyone else said. I hope you find as much comfort as I have here.

I have the same problems with alcohol. Back at Christmas, I had 1! winecooler, just one!, and ended up going to the hospital because I lost consciousness and was having trouble breathing, plus all the other symptoms 10 times worse. This was before I was on medication too. Alcoholism runs on ALL sides of my family heavily, so I had always tried to say away from drinks, but I've alctually had less to drink since I turned 21 than the entire time before. I got my diagnosis the day after I turned 21, so my celebration consisted of riding in the car up to Johns-Hopkins and spending the night worried to death about what they were going to tell me. The two or three drinks I've had since I've been on meds did the same things, just not as bad, but I went so far as to have apple juice with the kids at the wedding I was the Maid of Honor for, when everyone else had champange for the toast.

Jessica, I'm sure you remember when Isabel hit us in September. The eye went directly over my house in Virginia. We lost power and everything for 8 days. Luckily we had the generator so we were able to keep the fridge going for me and to use the shower every once in a while. My advice is get a generator if you can. If not the battery powered fan is a GREAT idea. Lots of water, even if it isn't cold will still help you. It not being cold doesn't change how much it helps you. Plus your other drink. Keep quantities of that mixed up already if it's one of those that has to be mixed. I slept straight through Isabel. My family COULDN'T wake me up. It was like I was comatose almost. Make sure your mom or someone else is watching Ethan when it actually hits, because if you're like me you'll be out of it totally at that point. Just try to stay calm. I looked at it as an adventure and that helped. We all sat in the living room at night and one person had a flashlight and we played "spot the light." We played board games during the day. It was actaully pretty fun, except for the no showers part. Make sure you have at least one flashlight for each person, including Ethan, if nothing else he will have fun playing with the flashlight. Try to find a propane camping stove. That's what we used to cook on. Hope this helps some. Just try to stay calm. Things will work out.

Okay I may sound dumb here, but what are PVC's? I keep trying to think of what it could stand for and am coming up blank.

I have the same thing. I've always been able to hear things other people couldn't. I can hear dog whistles, and I can hear the whine from machinery that trained technicians have to spend years trying to hear. My mom is the same way. I was sitting in class one day in middle school and the room had glass windows and was made of concrete blocks. We were out in the country and there was a field next door and a bunch of hutners with hunting dogs. I didn't know the dogs and hunters were there and all of sudden I slapped my hands to my ears and started crying and screaming because of the pain from this high-pitched whistling. Nobody else could hear and thought I was making it up. The teacher saw the tears streaming down my face and sent me to the office to get soem tylenol and lay down to call my mom. I'm also very sensitive to light as someone else mentioned. I don't have anything to help, just wanted to say me too, me too!

Hello, I'm 21 and I have NCS and POTS. I have low HR and BP, so I'm the opposite from you. But there are people with POTS who have high HR and BP all the time. Mine is low until I try to stand up then it goes really high trying to pump enough blood and then it goes low again because it can't. That's when I pass out or almost pass out. I've added you to my AIM list for DINET. My screennames are UnicornIsis4 @AIM, UnicornIsis @YahooIM, Luna_Sekhmet @hotmailIM. Feel free to use any of these to contact me. Until I began treatment for this I could barely get out of bed either, and sometimes I couldn't move at all. So I know how you are feeling. Most, to all of us, do. I try not to use the phrase I feel like I'm dying because it puts such a negative spin on things. And believe it or not one of the best things you can do for this is to try to have a positive attitude. It's VERY HARD at first, but it gets easier over time, and it doesn't have to be all the time. Just pick something once in a while and make yourself say something good about it whether you belive it at first or not. My thing was usually thank __(whatever/whoever)___ I still have coffee. I'll write more later, I have to go to a doctor's appointment for this, this morning.

I'm the same way. I produce extra adreniline and I was told and we attribute the restless movements to an adreniline rush. I'm also ADHD and that could play into it to, because a lot of the extra movements in ADHD is from an adrelinine rush. I know I can't spell, sorry.

I'm totally worse on my periods too. Before I went on birth control I would get so weak that I couldn't even move. I would end up at the doc's office once a month getting fluids becasue I was so weak and blood volume was so low. They would carry me in and I'd be able to walk out afterwards, but only to the truck. Mom would get me a salty fries on the way back home and that would help too. Doc. A put me on Orthocept. I had taken BC before and it made me really sick. But this seems to work as long as I take it with my other meds. He wanted Orthocept specifically because of some of the active and inactive ingredients in it and how they react with the other meds I'm on. This and the fluids are the only things that seem to help. I still get really tired and weak around that time and end up mostly sitting/laying on the sofa and sleeping for about a week or so. I've always had really heavy periods. They last 7 to 10 days and I have to use heavy pads the whole time and I have to use havey tampons the whole time and end up changing the tampons every hour or so, because they're soo full they start leaking after an hour. My OB/GYN hasn't ever mentioned endomitreosis(or however you spelll it) or anything like that. My mom gets heavy periods too. But since I've been on the Orthocept and other meds it's down to a 5-6 days and only heavy for 2-3 days and medium the rest. And the heavy time isn't nearly as heavy as it used to be either. So as long as I can I'm going to stick with this.

Christopher has passed away. But we are still making the cranes to send to him. I made nine or ten I think while I was at the Chill. His mother told Debbie that it really meant a lot to her and Christopher's family for us to make the cranes for him.

I'm 21, I'v been sick with this since I was 19. I've been getting the shakes the whole time.

I go to Dr. Abdallah and here is my OPINION of him. For me he is a GREAT doctor. His STAFF does get very busy and sometimes aren't the pleasentest people in the world, but HE is WONDERFUL!! For me and my family he is the best thing that has ever happened to me, especially since getting sick. I ended up going to the ER 2 nights 2 weeks ago. The other doctor in the practice was the one on call when we called them and told them what was going on with me. I don't usually go, but I was having trouble breathing as well this time. HE called me back in the middle of the night when it wasn't his duty night. Anytime I call the office he calls me back, HE talks to me, not the nurses. He will do anything in the world for his patients. He will even treat you free if you can't afford to see him. He is VERY dedicated to this because his SON has it. He and Dr. Grubb got together at the lecture at the Summer Chill last week and they are going to start working closly together. Dr. Grubb's office is even worse with time and apointments than Dr. Abdallah's office. My family has found that if you try to make friends with the office staff, they are mostly pretty nice and likable. They just get overwhelmed with everything and all the people and Dr. Abdallah ALWAYS being late. And the parents end up getting mad at THEM for Doc A being late, but he's late because he takes EXTRA time with each and every person. He really is the best thing for me and my family and I would still reccomend ANYONE going to see him. This is my opinion and I don't want any argument or anything started due to differing opinions on this subject, please.

I have a problem with frequent urination too. If I don't drink very much I'm okay, but if I drink just about anything, even a sip, out it all comes, and more!! It's like I'm peeing twice as much as I drink sometimes, it's NEVER just a little. I'm on florinef and midodrine, plus a bunch of others. I don't know what causes it, but if I'm traveling I try not to drink unless I have too, and make SURE we stop every so often. My poor dad gets in the car and goes and doesn't like to stop until he gets there. Mom and I on the other hand have to pee a LOT so we need stop sometimes it seems like almost every exit, but we never go even an hour with a bathroom break, even if we don't feel like we need it, I ALWAYS end up making a large deposit once I get into the bathroom, even if I haven't had anything to drink that time.

Ernie, I know several of the kids in DYNA said they're on muscle relaxers and Valium to help with the shakes. I'm not on anything for it yet, but mine have been getting worse so when I go back to my doc next Tuesday for other problems relating to this, we think, I'm going to ask him about it then. I'm just wondering if suppressing it with medication would have the same effect as trying to fight it, ie. making it worse. I HOPE NOT!! I still hope for the best when I can too. Susie, yeah, I remember, I didn't know you went to the hospital though. Sorry. The pain and shakes seem to correspond with me too. The worse the pain the worse the shakes. What you said makes TOTAL sense!! I usually get bad migraines after bad spells too, especially the ones where the shakes are intense. The ONLY thing that works for my migraines is a combination of morphine and phenergan. The phen. to help the stomach relax and take the edge off the neausa. The morphine dulls the pain just enough that I can fall asleep through the pain. I stay out for days at a time afterwards, but when I wake up it's usually gone. As soon as I wake up I pop an advil and a tylenol, like Doctor Abdallah told me to, and that's kind of a premtive stike against it coming back, but I have to take it literally as soon as I wake up the first time after it's all over. I've been having migraines since I was a small child and I've had 'em that have lasted for weeks on end without stopping. Usually I just ride them through because it's not worth the extra pain and cr*p you have to go through at the ER because the only way to get morphine in Virginia is at the ER and only once a month. I hope this helps some!!

Sara you are NOT alone!!! I am 21 and have been sick since I was 19. I have NCS and POTS. There is a WONDERFUL group for kids that I belong to called Dysautonomia Youth Network of America--DYNA. The website is DYNAKids.org. Its FREE to join and there are LOTS of GREAT kids your age. Girls and boys. Some newly diagnosed, some who have been dealing with it for a long time. We just had our annual Summer Chill in Ohio last week. It's truely AMAZING to actually meet other people our age in person who have the same thing we do. My screen name if you want to talk is UnicornIsis4 @AIM, UnicornIsis @yahooIM, Luna_Sekhmet @hotmailIM. PLEASE get in touch with me!! I know exactly how you feel!!!

Ernie and Sue, First, Sue, you're lucky, I get them all the time. Ernie, you described exactly what it feels like and what it does. As for what's happening/the cause, here is the way my doctor explained it and it makes sense to us, and my dad used to be an EMT so he agrees with this theory. The nerves in the nuscles are firing involuntarily, the same way the rest of the ANS messes up. But since it's the ones pertaining to the muscles, it causes them to move without us being able to control them. We shake the way we do because the muscles are being told to move in many directions all at once and they can't do it. It's like when a remote control car gets smashed or bumped too hard a few times, it's trying to go one way and the controler is telling it to go another and it's getting all the signals at once and trying to go in all directions at once. So it sits there going in circles or back and forth without any real control. Does this make any sense to you the way I explained it? I hope so! Ernie and Sue, you're right, they're not true seizures, but they're not the kind of shakes/tremors that people with Parkinson's get either. They don't really have an exact idea as to what causes it, the same way they don't really have exact proof that the ANS messing up is what causes all of our problems. But that's the closest they can get. Mine last from a few seconds for the really easy ones to many minutes for the bad ones. They can be just parts of me, like an arm, or my head, or my whole body. They can be easy, or the muscles can get REALLY tense and hurt really bad with the bad ones. If you are able to notice what's happening to you while it's going on, if you get the ones that tense the muscles up really bad, that's usually the peak of it for me, it goes back downhill and starts getting better from there on. Afterwards my muscles are really tired and hurt ery badly. It hurts to move for a few minutes afterward and I'm usally too weak to move during that time too. After I stay still and rest a bit, I'm okay again. I hope this helps y'all.

Okay at the DYNA Summer Chill Dr. Grubb said in his lecture that most of the community are now agreeing that the hypermobility we have (at least those of us that are kids with this, I don't know about the adults) isn't really considered a form of EDS anymore, since they've re-worked the categories of Ehlers-Danlos Syndrome. They're now trying to all call it JHS--Joint Hypermobility Syndrome. Well, my parents and I were talking while at the Chill and many of us kids get the shakes or tremors or muscle spasms, whatever you want to call it, but they're NOT actually seizures for most of us. We ended up describing it more as full body muscle spasms and that is basically the way my doctor described it too. So we've decided to call the shakes I get, which happen to just parts of me and to my whole body at different times, FBS--Full Body Spasms. What do y'all think of that name? We noticed at the Chill from Dr. Grubb asking us to raise our hands about who had EDS/JHS and from talking among ourselves about this later, that most of us have EDS/JHS, FBS--the shakes/spasms/tremors, and most of us are ADD or ADHD too, I'm ADHD. Does this relate to anybody else out there for a majority I'm wondering. Would those that respond mind putting which, if any, of these that they have and what type of dysautonomia they have. Most of us at the Chill had NCS or POTS, I have both. Thanks, y'all. I'm wondering how this will turn out and if it turns out the way I think it will I'm going to talk to my doctor about the results.

Michelle, yes I was the one they moved off the grass. I'm awake when I get the shakes, but it's hard to move or do or think or say much of anything. I had my eyes closed and couldn't feel much, but I knew people were lifting me up. I'm sorry I didn't recognize you at the picnic, I was having a bad time the whole time and I don't remember much of anybody or anything from that part. I was started shaking right before everybody lined up for the pic, I sat down in the front for our pic, but I knew it wouldn't make any difference if I waited till the pic was done for people to know I was having a spell, so I didn't say anything till it was over. You can't do anything for it and if you try to stop it or hold me still it just makes it worse. I just have to ride it out. So I figured it was better to get the parents pic and then let everybody freak out. I think the parents (and spouses I guess too) freak out more than us kids do when it happens to us. I agree there were a LOT of people there, Debbie said there 50 or 55 families just staying at the hotel. I'm just sad I didn't get to meet more people. It makes it much better for me when I can put a face to a name and a personality I already know. Less of brain fog that way.

I was there too!! Hey nobody met me!! I feel left out!! That's okay. Does anyone know who the lady was that helped Wednesday night when a girl went down in the activity room during the start of the movie? I was with her and I didn't catch her name, but she seemed like she'd been dealing with it for a while and like she knew a lot. She had dark hair to her shoulders or so. Also my dad talked to Michelle about how she does stuff for adults like the DYNA thing. He was the bald guy with glasses, 6 foot tall. I'm the 21 year old that most people thought was 16. From Virginia. My dad got my mom to get Michelle's phone number or something. I was the one who went down outside during the parents' picture at the picnic on Wednesday.

I'm going too! This will be my first time. That is if I'm healthy enough by the end of today and my test results come back okay today. I've been really down the last 2 weeks and mom and dad have decided that we're not going if I'm not healthy enough since we're in Virginia. Can't wait to finally meet you in person Luckygoat!! Please bring pictures of your kids!! I would LOVE to see them. MP

Casey, CONGRATULATIONS!!!!! I'm 21, and trying to take a class a semester at the local community college just to stay in school. I had 2 years at a four year college when I got sick. I'm determined to get my degree one way or another. If I'd been on time I would have graduated in May 2005 with my 4 year degree, so maybe I'll get to pretend I'm walking up there with you when you graduate! I'm proud of you for finding your doc yourself with the help of these people (as I did), and continuing your education!! MP

Hey, I had one for a month, and I'm getting ready to start another one probably. I had the same problems. I called LabCorp. and they sent me the infant stickies. Those were better, but I still had the horrible rashes and all. I would move the stickies just to the right, left, up, or down of where they were the last time. That seemed to help some. Mostly I just had to deal with it.