ariella

Concerned for you, please check in. In our thoughts and prayers

This came up as a side point in a different thread, so bringing it up again. anyone know anything about this? My pulse pressure is often less than 20pts.,usually at night, with other (usually mild)shocklike symptoms. Thought this was just par for the course, does this mean that a bp of say 85/70 is worse or more serious than a bp of 85/50??? Ariella

hi was thinking about this post today as i made my appointment for an emg/rns---very painful. Now here I was questioning my sanity, as I payed the copay for the privilege of being repeatedly shocked and jolted for about an hour to see how the nerves and muscles are functiong. I think that if I was so totally into myself, this is about the last thing I'd do! Ariella

hey, came to add a me too once a friend called a doctor to the house because I was dizzy, giddy, having shortness of breath, and standing on a chair trying to sing some of my favorite songs (hard to do with shortness of breath) Doctor was deliberating sending me to the ER, funny pulse he told me. Obviously not enough oxygen to the brain. Went over after a while and left me pretty knocked out. Ariella

ugh, computer just gobbled this, here we go again. I think I understood that if the systolic and diastolic are too close too eachother, this is called narrow pulse pressure, and could be a sign of shock. (any nurses out there?) Would make sense, was having other severe shock-like symptoms at the time. Believe it or not, shock symptoms happen so frequently that I don't even report it to the doctor. Oh, and my pulse pressure is usually very close together,a reading of say, 80/65 is not unusual for me at all. Ariella

I also thought it was impossible. Batteries were ok, bp remained incredibly erratic for the next few hours........felt only semi-conscious...it was several months ago, but was wondering Ariella

Enjoyed your story avais! I flew internationally several times with POTS before it was properly diagnosed, often didn't feel well during flight. Had to miss my sister's wedding this past December because the symptoms were totally out of hand (although the fact that it was out of control finally led the doctors to the proper diagnosis) Being treated now, and it looks like we may be having another family wedding. I live 7,000 miles (that's over 11 hours of flying time) from my family and still could hardly manage the car ride to the airport. Coming to terms with it. Ariella

ok, this happened a while ago, still puzzled: Was very very symptomatic, even laying down, took bp, and it came out to something like 50/60---backwards. Still alive to tell about it, just curious about it, obviously unusual for systolic (that's the top number, right?) to be lower than the diastolic...Any idea what that meant? Ariella

Hey, Actually did notice you were gone, imagined you were taking a few days break from being sick, sorry to hear you were actually in the hospital, but very happy to hear you were treated well. Most of us have had so many bad hospital experiences, it's reassuring to hear about positive ones. Enjoy being back home, will try to PM you tomorrow. oops, somehow shifted this whole message! luv, Ariella

Hi Ling Just writing in to wish you well. Hugs, Ariella

Hi Years ago my cardio recommended not using birth control pills, being that my heartrate was so unpredictable. Is this in line with others here were told? Any kind ok in dyasutonomia?(if you know the actual drug name instead of the brand name, that would be the best, I'm not in the US and our drugs are named differently. Thanks Ariella

Hi Jessica Relieved to hear things that are ok. I remember once saying to someone who was sympathizing with me that I'm just grateful it's me and not one of my kids. Wishing Alex a speedy recovery. Ariella

persephone, I also really resent the "anxious" comment. Someone who doesn't know you and how well you are handling this should not have the audacity to dismiss this as anxiety. It reminds me of when I went to the ER a while back because my feet felt like they were on fire...I seem to have some peripheral neuropathy. Neuro told me at the time that if anything else strange happens I should go to the ER. So the doctor there saw me and being I could touch my nose---thank God no brain tumor ,he told me that I'm suffering depression. Went back to my regular doc, told him what this ER doc said, and he laughed really hard--"YOU???depressed? never seen anyone with such good attitude. Don't listen to him. He's just a kid". Persephone, your attitude is nothing short of inspiring, and the chest pain ain't anxiety...but being that I've had it for years and still tell about it, probably just a nuisance and not something dangerous. Ariella

Hi Julie, Just writing to send you love. It's so understandable that you feel overwhelmed. And extreme exhaustion is the worst, I remember telling my best friend a few weeks ago that I would rather drop dead. It took a couple of weeks, and I realized it wasn't me, but the exhaustion talking. You have documented things going on, no way any doctor could responsibly tell you that this is in your head. I seem to have missed the story, the doctor mixed up your records with another patient???? For me what worked was getting it off my chest, so I hope just posting was helpful, nothing to apologize for, we are all going through this. Again, lots of love. Try to rest, there have to be some better days coming... Ariella

Hi, I don't have any good advice, but just wanted to add that I often have severe chest pain, ecg's normal usually, holter just showed the pvc's common in POTs and fluctuations between tachy and brady. It used to be really scary, but I've been having it for years without more severe consequences, so we don't make a big deal of it. I try to rest until it passes. Wishing you that it goes away soon Ariella

Hi everyone thank you all for your responses Dawn mentioned that it may be beneficial in terms of school etc., it touched a sore point here. My daughter's school was very unsympathetic when I got sick and it took "too much time" to get a diagnosis. It didn't help matters that sometimes my speech would be slurred or not focused when they would call. The guidance counselor called and interrogated me "oh, you had a doctor's appointment, what is the doctor's name? where is his office? what time was the appointment?"--you get the picture. I have since tried to smooth things over and explain to them going on, but in the principal's mind, everything has a neat easy fix. yeah, probably not the kind of person I want educating my child, we were advised to take our girls out, but don't have a better option for now. Every time I have to speak with them I'm spoken to as if I'm a social case. They even contacted the municipality at the time to report "something is going on" . Thank God I didn't hear from them. At least her homeroom teacher this year was supportive. The administration is the problem. I don't totally disagree with my pediatrician about putting a label, I took his comment to be referring to my condition, that it's not a real illness, just theoretical because someone wanted to create a new specialty. Hoping I misunderstood. As far as insurance goes, it's irrelevant, we have socialized medicine. But there is the issue of creating a balance between making sure they get appropriate treatment and not freaking her out. Ariella

hi again, first of all, I have not yet been diagnosed with myasthenia, I'm in the process of being evaluated for it. I have severe muscle weakness that is myasthenia-like. The autonomic dysfunction had been going on and misdiagnosed for 11 years...it was only properly diagnosed a few months ago..., and it was confusing diagnosis when my muscle symptoms started 3 years ago. So, until I get a proper diagnosis, and that might take some time, the POTS doc just has me on a low dose of midodrine, which honestly is hardly working anymore. I'm getting by with the help of some caring friends, and laying very very low. Easier said than done, I have five young children Ariella

Hi Sending love and prayers. The puzzles sound like a great idea, feeling accomlished through something creative is good for stress relief and keeping positive, which willl be so helpful now. It probably made Jeff feel so good that he was able to still take care of you by getting the car. Wishing you that the chemo should be both effective and go easy. Ariella

Hi I suspect that two of my children have symptoms that may be related to dysautonomia. Just consulted with pediatrician, as one child complains often of headaches, acts spacey, and fainted recently. She also has a heart murmur, echocardiogram normal. Suffers from anxiety. He did say that he may order a holter monitor, but felt that even if she does have it, he doesn't want to put a label on a ten year old who is otherwise functional, it will just be more disabling for her. He felt that since it is unlikely to need treatment now anyway and there isn't much to do..."have her drink a lot just in case, can't hurt"..., why bother diagnosing.. He also made a comment which I hope I misunderstood, something about "just because some professor wants to fill in his reasearch", and didn't end off the sentence. Maybe I misunderstood his comment, maybe I didn't hear right, but it made me feel like he just totally negated my condition. He was not speaking in my first language, so trying to give the benefit of the doubt that I misunderstood what he was getting at, although I am 99% fluent in the language he was speaking. This is a pediatrician I highly trust, he is a very good doctor, and it hurt. Comments? Ariella

hi, didn't vote, couldn't decide on a category, but I do use a wheelchair, partially b/c of POTS and partially because of a neuromuscular condition. I don't use it often, we live in an urban area without a car---I joke that now is the time to get a car, the only parking left around here is for the handicapped , I take walks using a cane, and sit very often. If I would go to the mall, which is very rare, I find the stimulation overwhelming even in the wheelchair, but wouldn't attempt it without. If I go shopping, I usually go local and don't spend too much time. I've come to terms with it, didn't like it at first because it made everyone around really concerned, and I felt treated as someone to be pitied and prayed for, as opposed to someone to hang out with. My kids on the other hand are very self-conscious about it, although I've grown used to it. I see it as my chance for independance, but truthfully, being in a somewhat crowded, hilly urban area it's not always practical. Ariella

deeplyset, I think that's why my doctor is reluctant to do a mestinon trial, scared to see how I may react, being that the dysautonomia is unpredictable and the midodrine is not as effective as it used to be. I think that by me the two feed off eachother, if I'm weakened from one, the other will come in for the final punch. Know the feeling of drifting in and out of consciousness. Very scary, especially when accompanied by shortness of breath. By the way, florinef is on the list of drugs that myasthenics may not have. Interestingly, I took it for the dysautonomia before they started evaluating me for MG and it made my muscle weakness and fatigue intolerable. It is the one time since I got sick, and this has been years, that I was crying to my friend that I would rather drop dead than deal with this. Not a good space to occupy. All the best, Ariella

Hi everyone, there's been a lot of discussion about mestinon and a lot of discussion about muscle weakness lately here on this site. Since I'm currently being evaluated for a neuromuscular disease that is probably unrelated to the dysautonomia, just thought I'd pass along some info I picked up on the MG forum...Just read that mestinon can first cause muscle weakness in those who take it who don't need it for its muscle-strengthening qualities. In fact, it's used as a diagnostic in myasthenia gravis, if the drug improves muscle strength, it is further evidence that the patient has myasthenia. Those who are taking mestinon and are feeling weakened muscles may want to check this out with their doctor. Ariella

Hi Corina I'll have to wave to you from the other side of the Mediterranean Enjoy Ariella

Anyone have anything that works for the lack of temperature control caused by dysautonomia? Only med I'm taking now is midodrine... chills are not being caused by the medicine... I know most of you can't tolerate the heat, my body doesn't adapt to heat either, but I'm chilled most of the time, sometimes shock-like chills. Like today. Not pleasant, even in the summer. thanks Ariella

so happy for you! Congratulations! Ariella