kjdube

OH can be life threatening to children and the elderly. Don't know how old the original poster is but she might have been diagnosed as child and being a child could be why she knows it as a life-threatening illness. For an adult... I don't think there have been deaths reported as such for otherwise healthy adults, where dysautonomia is the only cause of death. But some believe SIDS may be a form of infant dysautonomia. And in the elderly, in addition to adults with certain types of chronic illness, it has been reported in medical journals as a possible factor, or was present, at death.

Glad you are finally getting answers. There are a few drs in the US that are true specialists in chiari malformation and its related conditions and complications. My advice would be not to rush to ANY doctor but to read and research first, then decide. This is my experience both personal and many years working with others newly diagnosed, as I have chiari and also raised 2 sons both with chiari. http://health.groups.yahoo.com/group/chiari/ http://www.pressenter.com/~wacma/ Take care

I would keep to yourself and stay away from sharing info with coworkers. You don't know how they will react, some may have no sympathy and use that information to their advantage which could be trouble for you. I've never told anyone of my condition and I've been working at the same company 18 years.

Using gym equipment is a good way to start if you can't stand or are dizzy or have other problems when exercising. Depends on what you're able to do.. looks like you can do yoga so thats great. If you can't stand very long, start with floorwork and then work up to standing exercises like squats, and when you are able slowly add weights. You may benefit from physical therapy or a trainer if you're not familiar with what exercises to do, and there are exercise videos that have only floorwork also. For me, I have a gym membership so I can use the machines there, but mostly I do strength training with weights at home. I also try to walk and ride bike, for me walking is the hardest.

I work full-time. To be able to work I need: 1) meds 2) exercise 3) low carb diet 4) lots of sleep. If any of these things are not happening, then I'm sicker and have to suffer it out at work. During the workweek, I don't go out anywhere, I come straight home. Not even to dinner or anyplace as I need to go to bed very early, need lots of sleep. And the support of my DH. Sometimes with men you have to tell them over and over what you need and how you feel. If I don't say anything for awhile he thinks I'm "better", even tho I just don't want to discuss it anymore. We've been married 26 years and he still doesn't always get it. I'm trying to make it to retirement, which is 12 years. But I can't think of it that way, thats too overwhelming. Some days I get to work and think I won't make it an hour. So I try for the hour and sometimes I shoot for noon and then "surprise" I make it all day. Every day is a big challenge. Take it one day, and sometimes one hour, at a time. Communicate to your husband what you need from him, try to make him understand. He won't *really* understand tho, so the bottom line is that you have to take care of yourself and do the best you can. Take care and hang in there !!

What meds are you taking? For me, I have to have a beta blocker to keep my heart from going crazy when I exercise. I know they say beta blockers will prevent the heart from climbing into the aerobic zone but it doesnt matter for me as I am able to exercise at an intense level. Now without my betablocker, inderal, I'm a mess.

It could be the effects of deconditioning, which in "normal" people is often observed as an elevated heart rate. Also, theres research about the effects of complete bed rest - also space travel - and deconditioning of the heart and blood circulation, studies show prolonged bed rest and space travel can stop the ability to maintain an upright posture without dizziness or fainting. With POTS or those with dysautonomia, theres little or no research about the effects of stopping exercise. My experience - I exercised for years at an advanced level but had to stop in 2002 due to surgery, and it got so bad I could not stand or walk due to severe heart and bp problems, took 5 months to recover. In your situation, although it sounds like you've only been exercising a short time, it's possible deconditioning could be what you're experiencing.

Are you new to exercise? For me, as I became more physically fit it became more stable. Building muscle, especially in the legs, helps to keep my bp from dropping. Now I can go about 3-4 days with no exercise before having serious problems. Although it doesn't cure everything, exercise has made a huge difference in the quality of my life. Without it I'm basically house-bound and in bed.

Thanks Nina! I have the typical symptoms also, nausea and vomiting. Have you heard of anyone improving with both gastroparesis & POTS? If POTS improves then does the gastroparesis usually improve along with it? Its so discouraging not to be able to eat much

I've been unable to eat normally for the past 2-1/2 months. My worst symptom is pain. Does gastroparesis cause stomach pain? I get this about 1 hour after eating, when I eat "hard" food. I don't have pain when eating foods like bread or mashed potatoes. Where should I go for diagnosis? There are no specialists where I live, the nearest gastro dr is 100+ miles away. Can any gastro dr diagnose this or is it better to go to Mayo clinic or other specialists? Anyone go to the Mayo for this? I also have multiple food allergies and gluten intolerance but I belive this is not causing the pain. My dr said he found "inflammation" in the espohagus, stomach, and small intestine, but doesn't know why. Stomach and esophagus cancer runs in my family, so they did a scope and the stomach biopsy was negative. Any advice is greatly appreciated.

My bp gets low when lying down and I've passed out in bed many times, although awake prior. During surgery, my BP has been low enough for them to get very concerned, and if awake I would have passed out. Did a sleep study and it showed very low BP at times.

Yes I have this also, head vibrating, it comes and goes, sometimes have it several nights in a row.

I have ICP and POTS and chiari malformation. Chiari is a known cause of increased ICP, which is a different condition from pseudotumor cerebri but can be misdiagnosed as such. According to my neurosurgeon, he has found increased ICP and POTS common in chiari patients. He feels Chiari may be a possible cause of POTS. There have been studies published on this also. http://www.potsplace.com/links.htm#chiari

I'll purchase 1 or 2 in large or XL.

I also had a HD, have one ovary. Didn't go into menopause yet but want to assure you it was the BEST thing I ever did. To be sick with both POTS and endometriosis was horrible. So far POTS has not changed and I sure hope it doesn't get worse with menopause.

Yes I took Xolair and it did nothing for my allergies, in fact I think they are worse now than before and have other strange problems that developed since I starting taking Xolair but that could unrelated.

Here is a link, sounds simular to what I have : http://www.potsplace.com/Summer2004/augnews4.htm