Allene

If your kidneys are damaged, it could cause fluid to build up in your lungs. Probably the reason they want to do a chest x-ray. As for me, I'm waiting for my doctor to call me back about a treatment/further testing. I'm currently not on any meds for my dysautonomia, and the only treatment I'm on is to drink lots of fluids and get a gatorade in every day. It's not working well for me, so I went back to my doctor who seemed to be at a loss for what to do. He's supposed to do some research and call me with a treatment plan, or to refer me to a specialist.

I can't begin to tell you how hard it would be for any of us to know what your heart sounds could be without being trained, and without hearing it ourselves. It could be PVCs or PACs. It could be a murmur caused by Mitral, Tricuspid, Aortic, or Pulmonary regurgitation/insufficiency/prolapse/stenosis. It could be a third heart sound. It could be a fourth heart sound. It could be anything. The reason the doctor dismissed it is probably because he couldn't hear it himself, and therefore would have no idea what the sound is. Also, he probably figured that if your holter didn't turn up with anything terrible then the sound was probably one of the not-so-terrible things they found :/ Do you know if you're having PVCs or PACs? The definition of palpitations is "awareness of heartbeat" and that could mean anything. I'm aware of my heartbeat all the time, but that doesn't mean my heart is doing anything wrong that it doesn't do already. I also have what I consider "palpitations" which are PVCs (premature ventricular contractions). The "flump, flump, purr" could have been a couplet or triplet PVC. Or PAC (premature atrial contraction- not as common). Since they don't happen every time your heart beats (that would be ventricular or atrial fibrillation respectively), it could have been that. Do you have any structural heart problems/deformities? It probably isn't valve regurgitation/etc, since that is a constant and your doctor should have heard that. I don't know anything about third and fourth heart sounds, but I think they're pretty rare. PVCs are benign in themselves, and many people have multiple ones a day. They only become dangerous when the heart becomes trapped in the premature contraction cycle, because it leads to fibrillation, which leads to death. I have enough heart problems for three people, and my cardiologist has never been concerned about this happening to me despite the fact that I get PVCs on a regular basis. So my best guess, without having actually heard the sound for myself, is that it was a PVC. I am, however, not a doctor, nor have I had any medical training. I'm basing this off knowledge I've accumulated over the years by visiting my cardiologist and hearing about my own heart problems (I was born with atrial and ventricular septal defects, as well as faulty valves. I've visited the cardiologist regularly for the last 21 years). I hope that I've been somewhat helpful!

How do they test this? A blood test? I'd never be able to be tested like that D: I hope nobody ever orders it for me! I faint when I get blood taken if I'm sitting up. Sometimes even if I'm lying down. Anyway, today was much better than yesterday! I only have a mild headache, and I only had pre-syncope twice! I got to go to the local bookstore/cafe with my family and I didn't feel bad being on my feet a lot and crouching to look at books. I've been mulling over this for a bit, but I finally came to a decision to try to find another job. I want to keep trying. Partly because I really need money, and partly because I don't want to give up so easily. I guess I'll try a few jobs before deciding that disability is my best option. The bookstore I went to is hiring, so I'm going to apply. I'm also going to apply at the movie theater in town. Until I can get a job, I'm going to go back to my old job and see if they need another substitute (I used to work at a daycare. They always need subs). That way I'll have some kind of income until something more steady comes along. I really don't know if I'll be able to do it, but I do want to try.

Hi! I'm new too. It's nice to meet you (: I've found this forum so helpful to me, and I hope you'll find it helpful as well!

I've been attempting to count calories for the last few weeks, ever since my doctor suggested it. It can be hard though, because my best friend and I love making cupcakes. We make cupcakes about once a week and then I'm stuck with leftover cupcakes that I can't help but eat! This past week has been a little easier though because I've decided to cut out wheat and dairy, so no cupcakes for me haha! I've been trying to get anywhere from 1200 to 1500 calories a day, since I'm rather sedentary and my metabolism is a bit slow. Sometimes I go over, but I've lost some weight already so that's a great motivator. I don't "count" fat, but I try not to get a lot of it, since it can be a trigger for IBS (I've noticed it particularly being worse after a fatty meal. IBS is also the reason I've cut out dairy and wheat). I don't work out at all, though I used to before my symptoms got too bad for me to exercise anymore. I used to go thirty minutes on the treadmill every day, but I had to quit because I kept feeling faint and dizzy and I fell off the treadmill once. I also used to do karate, but I'd have a near-fainting episode every time I'd go to class and I'd have to sit the rest out after that. I can't afford to pay for classes that I can only attend half of. And now I can't afford it period. But anyway, yes, I count calories in an attempt to lose the weight I've gained since becoming so sedentary due to my symptoms being so bad.

Unfortunately, I'm unable to "ignore" my symptoms, as the majority of my problems are fainting/feeling faint. Extreme fatigue is a large part of it as well, but I usually push through that (if I'm not asleep. I sleep so much now :/). It's the feeling like I'm about to pass out that I can't ignore. I spent most of yesterday sitting down every few moments because I thought I was going to faint. When I have a near-fainting episode, I usually am even more exhausted than usual for the rest of the day (though, I get pre-syncope nearly every day, so "usual" isn't the right word...) My symptoms have been progressing instead of coming on and halting at a certain level. I think I could perhaps adjust if I was stable, but I just keep getting worse, so the changes I make one week aren't helpful a few weeks later. It actually concerns me a little, because I've been slowly getting worse over the last 3-4 years. I've heard of things like MSA and I worry that I have something like that.

Oh man I'll probably be in here every day haha! Today has been awful for me. I woke up feeling like crud, but I had to go do the weekly cleaning I do for my family. I get paid for it, and since I have no other job I can't just pass up opportunities for money. I had to sit down and rest every few minutes while I swept, vacuumed, mopped, and dusted. I also had to kneel at the bathtub to wash the dog. I would have washed her in the kitchen sink (she's a chihuahua so she'd fit) but the sink was full of stuff at the time. I really am not sure how much longer I can keep this up. My symptoms are getting worse and worse no matter what I do. Today I just felt so faint all the time. I'm feeling better now that I've had the chance to sit down and get a little food in my system (I did eat a bit of a breakfast before I went and did my chores, but it didn't seem to do anything for me today where usually a small meal will help with my energy levels.) The upside was that I got in some bonding time with my dog (: She doesn't like baths, but she's always so cuddly afterward! She's an odd dog lol I think I've earned a shower and nap!

I've been on several SSRIs and all have made my symptoms worse. I was already on Lexapro at the onset of my symptoms of dysautonomia (for depression), and it made things ten times worse. I took it for almost six months after I developed symptoms and then I had to quit because it was making me so sick. Two years later I went back on it but I couldn't continue taking it after a couple months because of how symptomatic I became. I've been on other SSRIs and they've always had a negative effect. I also took an SNRI (Cymbalta) which made no difference in my symptoms, except perhaps making them mildly worse. It must depend on the person, because clearly SSRIs make a difference for most people. I don't know why I have such a negative reaction to them.

What about other forms of dysautonomia? I haven't been diagnosed with POTS, but I have the same problem. My BP is normal but I feel lightheaded and dizzy, like I'm going to faint. Is it the same for all types of autonomic dysfunction?

I've never been to the ER for my dysautonomia symptoms. I've never thought about it before really. Unfortunately, my family is not supportive and if I went to the ER I'd have to pay for it myself and I don't have enough money for the copay (I haven't had a job for six months, due to my symptoms being so bad). But I've never really thought how going to the hospital could be helpful. I'd think that calling your doctor could help? He or she would be able to tell you if going to the hospital is necessary or not.

My friend showed me this article a year or so back. I think it's wonderful! I'm thinking about printing it out and giving a copy to select members of my family who don't have a good grasp on what it's like to have a "limited number of spoons."

I'd get a second opinion if possible. And a third and fourth if you have to. Just keep looking until you click with someone. I've been through multiple psychiatrists in my short life, but after a dozen or so I finally found someone that really seems to listen and tries to understand and doesn't make assumptions. Maybe also being matter-of-fact about the dysautonomia could help. As soon as he gets his diagnosis written down, carry a copy of a brief letter from the doctor describing the condition to your next psychiatric visit. Basically, leave no room for argument. If one psychiatrist cannot accept the letter as fact, then move on to another one. It might be hard, and it might take you a bit far from home (I have to drive nearly an hour every time I see my psychiatrist), but a good psychiatrist for your nephew is like having a good doctor for his dysautonomia. And of course keep his thoughts in mind when settling on the right one! (:

Alright, it seems having some type of liquid that I could drink first thing in the morning could be helpful. I'll try that! Thanks C:

I have the same problem, though not quite as severe; I'm still able to more or less function to an extent. Every day I have near-fainting episodes, and it really drags me down the rest of the day. I've found that if I rest for a while and then eat something light, I feel a bit better. Especially if I've actually fainted. I usually don't feel hungry, and in fact I often feel nauseous and don't want to eat, but I eat something small anyway and it seems to help a little. Getting some kind of electrolyte-filled drink in my system also seems to help. Maybe something like that could work for you. I hope you get to feeling better!

Just out of curiosity. I keep reading how some people have lost weight, but some have gained and I wanted to get a better grasp on the numbers. As for me, I gained weight. About 20 lb so far, but I'm working hard to lose it. Mostly by eating right (I've lost 5 lb in the last two weeks ), since I have severe exercise intolerance.

I like eating pickles Pickles have always been a favorite of mine, and now I can eat all the pickles I want! It feels so bizarre to me to be able to eat as much salt as I can. I was born with a heart defect which required my blood pressure to stay low to ensure I didn't develop congestive heart failure. I wasn't allowed any excess salt. I was even on blood pressure medicine to keep my BP down. Since it's been repaired, I'm able to eat salt normally, but until recently my cardiologist has always warned me to not eat too much. Now he says I can forget about salt restrictions altogether!

When I was younger, I suffered from severe depression and I also had hallucinations. I think it was mostly related to sleep-deprivation. I'd go through periods of insomnia, and periods where I'd have severe nightmares that wouldn't allow me to get any rest. Perhaps find out if your nephew is sleeping alright. My psychiatrist knows about the hallucinations, but has never even suggested schizophrenia. I was suspected of having complex partial seizures, but my EEG came back normal. I found out that they did the test wrong, but it was a sleep-deprived test and I can't stay up all night anymore so I can't re-do it. Personally I think I do have some form of epilepsy. Maybe the test was done wrong in your nephew's case.

Thank you for such a warm welcome! I live a little ways north of Houston. It's been pretty hot here this summer. Every day over 100º! But I've been keeping cool inside, and only venture out when necessary. I've been stalking browsing this forum for a week or so and I've found it very helpful. It's really answered a lot of questions, and confirmed several things that I thought could be related. That's a really good idea, to print things and ask my family to read it. I think I'll do that! Especially where wheelchairs are related. They do seem to understand that I don't feel well, they just don't get it that even though my legs function that I have such a hard time getting around. They don't understand how unwell I feel. I've been tempted to use the powered carts when grocery shopping, and I think I might start doing that. It would be killing two birds with one stone. Giving me a break from walking all over the store, and getting my point across that I'm serious when I mean I really can't be on my feet that much.

I imagine this is a big problem for almost everyone with any kind of dysautonomia, but I have major issues getting out of bed in the morning or if I get up at night for a bathroom trip. I almost always have a near-fainting episode, and sometimes I faint just getting out of bed! I don't launch myself out of bed either. I sit up, and sit there for a bit, and then I slowly stand. This doesn't seem to make a difference, but I do it anyway because I'm simply too stiff to get up quickly. Most of my fainting episodes are in the morning getting out of bed. Does anyone have ways they cope with this?

I first started getting symptoms when I was 13. I'd faint occasionally. It wasn't until I was 18 that my symptoms really started becoming a problem. I voted 1-5 years. I'm 21 now, so that's about 3 years that I've been seriously symptomatic.

I was put on Lexapro for depression last year. I was on it for two months, and it made me feel ten times worse. I was fainting almost every day, I couldn't do anything without having a near-fainting episode. I had tremors. I felt sick to my stomach. I couldn't breathe. Once I quit taking the Lexapro, I felt fine. I'm now on an antidepressant from a different category. It hasn't made my symptoms any worse, but it hasn't made them better either! I've also been on mood stabilizers, two different anti-epileptic drugs. They seemed to make my symptoms worse too. I always wondered if the fact that they acted on the nervous system had anything to do with that.

I have IBS related to my dysautonomia. Recently, it's really been bad. I'll get bloating and cramping and general discomfort after every meal. Diarrhea takes me down about twice a week now. I also have gastroparesis, which makes me nauseous. This past week, I went online to find out what kinds of foods can make IBS worse, and also to see what I can do about the gastroparesis. I've cut out dairy and wheat, and consciously have been eating low-fat and foods low in acidity. For the gastroparesis, I drink a (homemade) protein shake in the morning, and have several small meals during the day instead of three big ones. I haven't experienced any problems since I started doing this. My appetite has returned, and when I eat I don't feel like I'm cramming food into an overpacked tummy.

Normal BP for me is about 115/70. When I really started getting symptoms, it has dropped as low as 50/40. Lately it's been up to 140/80 while seated. It tends to drop to my "normal" when I stand, and when I've been up for a while it gets even lower. I selected "swings too high and too low"

I've had local anesthetic twice since I started developing symptoms of dysautonomia, and neither time did I feel worse after the sedatives wore off. Though I did find out that I'm allergic to whichever kind of anesthesia they used the second time. I itched for two days afterward :/ Though after I came out of recovery, I noticed that I had no balance and I couldn't really do much of anything. I think that's pretty normal for recovery from anesthesia, as it's happened to me before (and the nurses didn't seem surprised). Anyway, I think I have POTS, but I haven't been diagnosed with that specifically (just autonomic dysfunction). Hopefully you won't have any ill effects!

Hello! I'm Allene. I'm 21 and I'm from Texas. I was diagnosed with autonomic dysfunction in January, but I've been suffering from progressively worsening symptoms since 2008. In February I was in a wheelchair exclusively for a few weeks until the treatment my doctor prescribed started kicking in. He gave me florinef and thermotabs and told me to drink 48 fl oz a day minimum and to have gatorade on a regular basis. Also he told me to cut out caffeine from my diet. For a few months I was almost back to normal. Unfortunately, the symptoms started creeping back up on me around May, and I'm nearly at the point of needing a wheelchair again. I faint twice a week, give or take. I get pre-syncope multiple times a day. I can't lift my arms above my head for very long, kneel, bend, or lift anything more than 10 lb. My family doesn't understand that just because I don't look sick doesn't mean that I'm not sick. I have IBS, which I'm treating with a radical diet change (it's been working so far). I've been to my PCP a few times, but he doesn't really have a good grasp on the illness and doesn't know how to treat me. My insurance only covers one trip to my cardiologist a year (my cardiologist diagnosed me on a routine check up. I was born an atrial and ventricular septal defect, which was repaired when I was 4 years old, and I also have mitral and tricuspid valve regurgitation.), unless I have a referral, so I can't just go back and see him. I've been trying to talk my family around about getting a wheelchair again, but nobody seems to understand that walking causes me to feel faint, get a headache, and it drains my energy. They think that because I can walk, then I'm fine. I can't stand for more than 5 minutes at a time. I had to quit my job in Feburary because I couldn't do it anymore. I am unable to attend my university because I sleep 12+ hours a day (more if I've gone out or done something the day before). My arms go numb at night, due to low blood pressure. My lowest recorded BP was 50/40. Now my BP is more or less normal, but I'm still suffering from the symptoms. I applied for disability last week. I'm crossing my fingers that I'll get approved. My fear is that I'll continue to get worse and become bed-bound. As it is I'm almost home-bound. I have to turn down invitations to events all the time. My friends want to go out with me, but I'm just too tired to go most of the time. I've found this wheelchair that I'm interested in. I used to despise the idea of a wheelchair, but now it's more appealing. If I could get out and about and not worry about having to sit and rest every few minutes, I'd be happy. I like getting out of the house to go grocery shopping and things, and I think my quality of life would improve if I had a wheelchair. I'd encounter other problems, such as getting the wheelchair in and out of the car (who's gonna do it once I can't anymore?), and my living arrangements (my room is currently on the second floor), but I'm sure my family and I will be able to work it out. Once I get them on board anyway. The only big issue would be the cost of the wheelchair. I'm not sure if my insurance will cover it at all. I rented a wheelchair for a month when I needed one last winter, but I hated it. If I'm going to be in a wheelchair much of the time, I want one custom built for me. Anyway, I just wanted to introduce myself and say hello