Chrissy

In 2002 they estamated a million people had dysautonomia. Now they say 3 million Americans have dysautonomia.

I found the American Dysautonomia Institute, they are mostly about getting and keeping funding for research for a cure. They ask that you send letters to your congressmen and house representatives. Also sending letters to the president, vice president, and first lady. They have the addresses and fax numbers for all these people. Also a pamplet for dysautonomia awareness. www,adiwebsite.org Also the main page of Dinet has brochures they can mail to your doctors.

Is it true that dysautonomia isn't on the approved list for disability list for SSI? That seems crazy. It's true. I know its crazy. I have been fighting for ssi and medicaid for 3 years. My attorney says its cause I'm so young and that we have to prove that my symptoms as a whole create a disability. I'm told if you appeal it enough and make it to the federal level they will grant your request. They have to back pay you until you first file as long as you keep appealing the decision. SSI and Medicaid are a popular subject on this forum.

Hi, I have been sick with dysautonomia for the past 4 years. From the beginning my mom and I have searched the internet and books for any and all info on this not well known subject. Still with this knowledge the past four years have been an on going fight. A fight with uneducated doctors. A fight with insurance companies. A fight for diability. A fight with uneducated family and friends. This I wish to change. I along with my mom want to be advocates in bringing to light this very real, very life changing condition. Let America know this issue is out there. Fight to have this condition on the approved disability list for SSI and Medicaid. Try to stop the mental abuse caused by uneducated doctors that are too lazy to do some research. Having psychologist and life coaches, who understand dysautonomia and how it limits patients lives, help patients and their families live as normal of a life as possible. Helping lessen the number of families that fall apart due to living with this condition. Bridge the gap in communication/understanding between patients and their families. I would appreciate any input or advice on organizations we can get involved in to help make these goals a reality. Thank you, Chrissy.

I have this problem too. But I have an undetermined endocrine issue that is causing weight gain and overshadowing my POTS. I still feel severely POTSEY, but my b/p is in the prehypertensive or the stage 1 hypertensive range. My doctor said not to change anything. I was even told to continue the high salt intake. Not sure if this helps.

I have been having noticable cognitive issues for the past 4 years, increasingly getting worse. I just assumed it was POTS and brain fog, but it seemed worse. I first got diagnosed with adult ADD in 2006 to explain these issues. I was put on strattera, which didn't work and my POTS doctor thought it was adding to my autonomic issues, so I got off it. In October 08 I convinced my neuro to refer me to Baylor to have a cognitive study. Like other people I've read on here the test came back showing deficiencies, but was considered normal. My neuro put me back on strattera and after 2 months of not noticing results my POTS doc took me off. I understand that low blood volume contributes to these problems. Are there any other aids, supplements, whatever? I am really struggling with downing enough fluids to function. In fact my POTS doc said I look and sound like I'm on the dry side. And I believe I'm moderately dehydrated on top of that. Any advice is appreciated.

In december I had a really bad case of IBS or what I thought was Crohns. I lived in the bathroom for a week straight and when I thought I could get out of the house I ended up turning around and coming home or having "issues" in public. I was not eating much at the time and fluid intake was low. This lasted a week. I then started a crash diet, I know, not a good idea. I was drink two ensures a day and a very small snack for lunch. I was also exercising 15 minutes every 3 hrs from noon - 10. I was intaking what I thought were good amounts of water. I never could stomach drinking more than 64 oz. My muscles in my legs have become so weak. I mean I've had muscle weakness before, but not like this. So I went to my annual appt with my POTS dr. and she said that my symptoms definitely sound like I'm on the dry side. She told me to drastically cut back the exercise and told me to drink 64 + oz or take the temperture outside and drink that many ounces. I came home and drank as much as I can. I'm not feeling any better. Every dr I see I mention dehydration and they let it go in one ear and out the other. I can drink 3 1 liter bottles back to back and my mouth still feels like the desert. I'm sleeping way too much. Way more than my usual chronic fatigue which they thought was bad enough. I have major migraines which isn't new, but it feels different than the others. I feel like my sinuses are dried out and hurting. And it is obvious I'm outputting more than I can intake. I guess what I'm wondering is is this just pots progressing and I have to just try my best to hydrate or deal with the symptoms. Or can I go get a giant iv bag to help offset the fluid lost. Please advise. Thank you.

I've had this condition 4 years and am still learning new things. Lately I notice my heart rate will go from 110 to 64 in a matter of seconds when I lay down, which is very painful. I also notice when I roll over my hr jumps 20 bpms and knocks the wind out of me. Or when I wake up on my own, no one or alarm to assist, I feel like someone jerked me out of sleep. My hearts racing and I'm hyperventalating and it takes a while to get my composure. Is this normal? I've had 2 sleep studies, which unfortunately were on good nights, and found a mild apnea too mild to treat. Another tachy issue is noise. When my alarm goes off to remind me to take my meds, even if I'm expecting it, looking at the clock counting minutes, when it goes off my heart skips a beat. Same with turning on the tv or music. This is stuff that's gonna be in my life, I can't avoid such noise. Is this normal?

I bought a wheelchair about a year ago for when I went some place that required alot of walking. I find I use it more and more lately even for simple in and out trips to the store. My insurance paid all or most of it, I don't remember. I'm pretty sure the insurance wanted to buy it and not rent it. Pots is a cardio condition and that entitles you to certain perks (wheelchairs, handicap plaquards) I called my insurance company and just asked "If I needed a wheelchair, do they cover the cost?" they told me if my doctor felt I needed one they would most likely cover the full cost. You just need your doctor to write a prescription for one and find a place that sell them. I find using the word autonomic dysfunction is in the disability book for getting a wheelchair.

If I spend too much time in an upright position during a day, by the time I go to bed its torture. When I lay down all the blood rushes to my heart. I've never had a heart attack, but this feels pretty close. I also feel like a cinder block is dropped on my stomach. Its like trying to push a flood through a pin hole. Anyone else have this?

I went to Baylor in Houston to have cognitive test done and the results came back showing difficiencies in a few areas, but relatively normal. My true cognitive situation was not revealed on that test! Anyways the neurologist that ordered it gave me a long lecture on how I'm emotional and making myself have these symptoms and how I might have been sick before and am not anymore and I just didn't get the memo or whatever. Saying I don't even still have pots, which I clearly do. So a few months pass and I went to see my local neuro and I took him a copy on my cognitive test results. He came to the same conclusion, that my emotions are causing me to be "stupid" and questioned my autonomic dyfunction too. I admit at the time of the test I was on anti depressants that were making me more depressed. I had cognitive issues before the anti depressants and I have them after them. I slowly got off them a few months ago and once they are completely out of my system I will evaluate what phych symptoms I need treated and not let drs talk me in to taking them cause its only logical that I be depressed and need relief. They made me worse not better. Anyway I know brain fog is a dysautonomia symptom and I've heard that people on here had the same deficiencies on their cognitive test. So its pots! I can except that, but is there something that will help me get some brain function back to pursue my hobbies (writing, reading, memorizing monologues)? This neuro gave me strattera to see if it helps. Any other suggestions? As for the doctors, I'm gonna stick to the people that truly understand dysautonomia and pots.

I don't take Midodrine. I guess it is more of a shiver, but it is bad enough to be noticable to the people around me.

I get shivers/tremors all the time for no reason. But it never fails when I'm eating or anticipating eating I start to shake mildly, but uncontrolably. Not sure the connection. Anyone else have this?

When I first got diagnosed my doctor told me to overdose on sodium and potassium. So I drink alot of gatorade and eat food with salt in it. But since getting on my latest med, Nadolol, my b/p isn't as low as normal with this condition. I actually tend to run a bit high even for a normal person. I still bottom out at times, but not as often as I'm high normal. I don't add any salt to my food anymore, unless its bland, but I still drink the gatorade and am addicted to sunflower seeds. My heart rate was staying below 100 til recently. Now I jump up to 115 just going to the bathroom. I'm convinced my Nadolol is not working right right now and am going to see my doc in January. But is the sunflower seeds helping or worsening my hr?

The brand I bought was $40 and went up to $70, depending on extra features you want. I saw some cheaper that came with a chest strap, which I opted not to get cause I'm wearing it all the time not just to exercise like it is intended for.

I found a wrist watch in the exercise section of Sears and Academy that records your heart rate at a push of a button. I guess it reads off the pulse in your finger, it records your heart rate in 3-8 seconds. Alot easier than waiting for the b/p moniter to inflate and deflate.

All my doctors tell me to get a hobby or join a community service group, to get my mind off being sick. First of all I'm not the one dwelling on me being sick. Second of all, I had more hobbies than I knew what to do with, but due to severe brain fog I am unable to embark on them though I try often. I also don't like community service groups, I was a part of a few and found them unproductive and boring. I'd rather put my limited energy towards something I enjoy. Doctors say for my parents to push my limits, make me use my brain more, and help me "grow up" into a semi normal adult. So here's my frustration, I love kids more than life itself and I want to be around them. But no one in my family thinks I can handle it. My mom and dad always smash my dream of one day being a parent, its not safe, think of the child, you could never keep up with a kid, etc. Shatter my last hope of normalcy/dream. My brother has a 2 year old and a 1 month old, I hardly get to see. The 2 year old has been going to see her mom's relatives (grandma, mom, aunt, anyone really) for weeks at a time since she was a few months old. But she doesn't get to come to our house unsupervised because my parents both work and I'm unable to care for her, though I BELEIVE I could. My mom works 5 minutes up the road if I needed anything, which I don't forsee needing, and if I'm worn out when she gets home then I can lay down and let grandma play for a while. My brother even freaked out when I took her outside to play by myself. I know my limits and I'm not gonna endanger my little niece. Next thing that is bothering me. I've been "debilitatingly" ill for 3 1/2 years and handling it myself. I try not to impose my discomfort on anyone its not necessary to do. I very rarely complain. When I'm around people other than my parents, I pretend to be normal/ healthy. I think its possible due to adrenaline. I don't want their pity or for them not to want to be around me because I'm too depressing. But my dad acts like his life is over. He's always complaining about this and that and very moody. My dad used to be a big kid always playing pranks and joking. He works one week on and home for a week and on his week home all he does is sit on the couch with his computer on his lap doing absolutely nothing of importance. He puts off leaving the house til the very last minute. And started developing diabetes, sleep apnea, GERD, and some other small stuff. He's always commenting about lead injections and silver bullets. My mom is more understanding and the only thing that bothers me is when she complains about the medical bills, or COBRA that we shouldn't be paying, and how broke we are. I me knowing its my fault and I can't do anything about it cause I haven't yet been approved for SSI. So the first Thanksgiving my dad is home in forever. We're extremely broke because we had to pay a lawyer 2 grand to fight to get me back under my dad's med insurance. So I pretty much offered to not get anything for christmas, I had no idea what I wanted anyway and prefer to just enjoy the season itself. Well Turkey Day comes, and my mom and I have been up baking pumpkin bread and getting ready for the big feast. My dad was supposed to have already gone got the newspaper so we could look at ads, and he's still in bed. Then he gets up and sits on his couch with his computer. A few hours later I asked my mom to take me and cracked a joke about wheeling myself in my wheelchair. My mom thought it was funny. Then we're watching the Macy's parade, which I wasn't impressed with this year, and the subject came up about the neice coming to visit, but no we can't impose on granny and aunt ..... with a 2 year old and I commented, "yeah cause everyone forgets I'm an adult," my dad explodes about me having a major illness and blah blah blah. I said that should be my decision if I can handle it after all I know what's going on in my body. So I take a nap to keep from crying, kids are a touchy subject for me. I wake up and we go check the bird and I'm joking with my mom about it being burnt and my dad comes in out of nowhere and says, "You're really getting on my nerves." Needless to say I was so upset I skipped eatting and hid out in my room. Then I find out we're not just going to get a few last minute stuff on Black Friday, we're suddenly rich and gonna buy everything in sight. He's always blowing up over the stupidest things, that my mom, who I am normally directing the comments to, is laughing at or agrees with. Why is it that my world blew up in my face and he's the one giving up on life? And do I really need the added stress of his depression, or our financial situation? I can't help it and I'm not gonna have to watch what I say cause he might be in a bad mood. I would rather surround myself with positive people. Anyway just needed to vent. Thanks for listening.

For those of you that got pregnant after you were diagnosed with POTS, did your kids at any time get diagnosed with it or dysautonomia also? I read all the posts about pregnancy and they all say they were blessed with healthy babies but I was wondering if the children had problems later on. My condition is so bad that many days I can barely function, but I would still like to hope that someday I will get married and have kids. It seems like all my other life dreams have been taken away from me and I just keep hanging on to someday being a good mother. I would never wish this condition on anyone! Out of the blue I just got it at 17 years old. I am now 21. I appreciate any replies. Thanks!

I recently had a neuropsych test done at two different drs. The more psychological test was done at my psychologists office. It took me 3 hours to complete a "simple" standardized test. The doc was extremely surprised it took so long. Then I went to Baylor in Houston to have the more "educational" cognitive test done. The test started in the early morning, which is my best time of day, and lasted 4 hours. You can have a break as often as you need, but I was afraid if I stopped I wouldn't be able to continue. I was disappointed that my mind decided to work on this day. I got my report back and the neuro who ordered it said that it was good, I wasn't retarded. But as he went over it with me and my dad, we kept looking at each other saying you call that good. I scored average overall (99), but low average on most sections. As stated above my main trouble areas were memory, recall, comprehension, problem solving. In the report it did say that if I were in a stressful situation, like the real world on a time schedule, I would do much worse and possibly couldn't function. I'm getting a second opinion from my main neuro who understands my condition. I just wish I had a previous cognitive eval to compare it to so they can see the dramatic decline I have experienced over the past 4 years. And will it continue to decline? Can it be reversed? I got off my antidepressants, as I felt worse on them and wanted to see what psych issues I have and what were caused by the antidepressants, my mind got much clearer, but no improvement in brain function. My blood pressure is controled, it doesn't go lower than 89/48 (rare occation) and up to 130/82. My heart rate is also undercontrol, right now its acting up and going to 103 for no reason, which is good considering what it was before the meds. But my symptoms don't match the readings. Anyway off topic.

I am post ENT surgery and have been in the ER twice. Once for chest pain and once cause my mom was totally freaked out by my shortness of breath. As usual the tests came back normal and all the doctors, ER and personal, think it is panic attacks. The problem is the shortness of breath episodes I am talking about tend to happen when I am laying down going to sleep or just waking up. Or if I'm sitting still not seriously occupying my mind. I have to FOCUS on something. I can't accept the panic attack theory because when I'm experiencing these episodes I am perfectly calm. In fact too calm, like I've overdosed on downers or something. The shortness of breath would be described as short, rapid breathing. Could this be the miscommunication of the brain and body, making it seem like a panic attack, but not be? Does anyone else have this? Most of my shortness of breath issues have to deal with my b/p and heart rate. This is the first unexplained and it is driving me crazy trying to figure it out. They gave me Xanex, that does not solve my problem. Insight, please.

I have officially been diagnosed with POTS / Dysautonomia for 3 yrs. I am really having a tough time right now and need to know if you are experiencing the same thing. First off let me say that I did just have my tonsils and adnoids out a week ago but have been assured that my symptoms have nothing to do with that. I am 20 and have been told it is a difficult surgery to recover from for an adult. I did not have any problems with that as much as I have with my POTS symptoms. My whole experience with this condition started with severe chest pains and I know that it is part of it but what I am experiencing is different than that. I am having severe chest pain with stabbing pain in the heart. If I didn't know any better, I would say I was having a heart attack. I actually waited 4 days to see if it would pass before finally going to the ER last night. It has been my experience that they have no clue about my condition so ends up being a waste of time and money. But I was really getting scared. They ran a lot of tests (ekg's, CAT scan, labs, etc) all of which came back normal, of course! I know this condition is progressive and even though I have seen that, I am wondering if this is the next phase that I am going through. That is why I need to know if you have this sharp stabbing pain too and tightness in the chest. Like I said, it is different than the original chest pains I experienced with POTS. I have also been extremely short of breath even while laying down. I gasp for air when I talk, roll over, or any other activity worse than I have in the past. I look forward to your replies! I love this Forum because I can converse with people who understand and can relate. It is very frustrating to try to get the doctors to understand.

I love being a kid and plan to be one the rest of my life. I just want control over it. I've always been more immature than other kids my way, but I also was able to act mature beyond my years. I'm an actress at heart and every good actor as a big kid in them somewhere. I just want to be able to turn it on and off. I HOPE to have a baby some day and its bad enough I have physical limitations, I don't want to be too immature to raise my own kid. If that makes sense.

Thanks all! I try to use my mind as often as I can. I'm not really depressed or worried about "getting stupid" I just was wondering if it was part of pots or should I bring it to my neuro's attention.

I use my brain, just not as often as I should. I right screenplays, build puzzles, word search, and assist in running a home based business. I'm just limited to how often I do it or how much I'm able to accomplish before I get frustrated to physically unable to do it.

I feel like my IQ is decreasing. I completed 10th grade before I got too sick to finish school. I have the usual brain fog, cognitive issues, and concentration problems. On a good day I'm lucky if I have the mental capacity of a middle schooler and on a bad day I have trouble doing stuff I learned in grade school. I've failed at helping my mom with simple filing, I struggle to make simple change ($20 - $5.50), I can't balance a check book even with a calculator, and I struggle to read teen chapter books. Is this just me or is it common with POTS.