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How Serious Is Autonomic Dysfunction??????


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The reason I am asking is I want to know if I could kill myself by using my walker more than my powerchair???? Will I cause a heart attack or stroke if I push myself?????

I am going for the first time to see an autonomic dr. ... finally being put in the right path.

My husband and family see me struggle and see how severe my symptoms are when I try to walk,,

I am wanting to be blunt but not scare anyone either!!!!!!!!!! can this condition kill us?????

I know everyone is different with this condition but it is hard when you don't know the limits and not sure what you can do.... I feel sometimes I am so limited mentally thinking I will hurt myself so it keeps me from doing things.....

hugs to all

Lisa

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there are some types of autonomic dysfunction that are more severe than others -- such as multiple system atrophy (MSA) that tend to have a poor prognosis after about 10 years of first onset symptoms, but MOST autonomic dysfunction conditions, though life altering and annoying, are NOT at all life threatening. life ALTERING but NOT life threatening.

I would not be concerned with using your walker more than your power chair. actually, in most cases of autonomic dysfunction, it is worse for you to just let a wheelchair do all the work for you instead of trying to walk around a bit, get some exercise. a deconditioned state does not help out autonomic dysfunction any, and can actually make you worse.....

I know you are scared, but I really dont think using your walker more than your powerchair will cause a heart attack. I have heart rates of 200 BPM every day, off and on, because of autonomic dysfunction and I have not keeled over....I actually try to be as active as possible even though I can get pretty symptomatic in doing so..... the symptoms can be scary, and heart rates can soar, but as long as you arent in heart failure or have a serious cardiac condition, I think it is worse for your heart the less mobile you are.

Hang in there and good luck with seeing the autonomic dysfunction doc.

cardiactec.

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Hi Lisa,

I'm gald to hear that you've got an appointment coming up with an autonomic doc, hopefully they can answer most of your questions.

Whe I fist developed POTS I just used to black-out regularly,as I started to improve with medications instead of blacking out I would develop lightheadedness with severe chest pain. During a really bad episode of chest pain a collegue made me go to the ER to get checked out - I actually got admitted overnight to have lots of ECGs and repeat blood tests (cardiac enzymes), I think that the junior ER doc was mostly scared of the POTS diagnosis and didn't know if the pain was significant or not. The next day I saw my own cardiologist and he almost laughed at me for being in hospital - he said that there was no way that I'd had angina or a heart attack due to heart disease but that the pain was due to very low blood pressure and extreme tachy.

He told me that there was no link at all between POTS and coronary heart disease or stroke. He told me that the POTS wouldn't do me any harm unless I had a blackout whilst crossing the road in front of a bus!!!

I am now trying to build up my exercise tolerance and standing tolerance. I think that aids like wheelchairs can be fantastic in giving you independance and allowing you to do things that you couldn't manage otherwise. In fact I am hopefully getting funding for a wheelchair to help me do my job. However using chairs doesn't do anything to help POTS and arguably spending too much time sitting or lying down could actually make it worse. I think that it is important to push your body to maintain and improve your mobility and ability to stand. I'm not saying do so much that it makes you really ill, just a little bit extra each day or two.

Walking with your walker might make you feel ill but it shouldn't do you any harm at all and will probably help to keep you from getting too deconditioned.

Let us know how you get on (both with the walker and the ANS doctor appointment).

Flop

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I encourage you to educate yourself--there are resources you should probably read on the main DINET site:

http://www.dinet.org/

Also, you can download a free book in PDF format on autonomic dysfunction which can be found at NDRF, another nonprofit organization serving people like us. First you'll need the free Adobe Acrobat program

once you have that installed, you'll be able to read the chapters of the book, which can be found on the NDRF website

Each chapter must be downloaded separately, but the ENTIRE book is available there for free.

Nina

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Hopefully your doctor can answer some of your concerns, but in most cases, dysautonomia is not a lethal or dangerous disorder. I just wanted to say that I completely understand your concerns, as I had the same questions when I was initially diagnosed. I get tachy sometimes, and my bp tends to run on the high side. I have never completely blacked out but have come close a few times, and I get very weak and dizzy at times. I am very limited physically, but have learned that I can now tolerate some light exercises as long as I am on my meds, and listen to my body.

I used to be so scared everyday, but having the right doctor, the right medications, and having a support group like dinet has brought me a long way emotionally.

Good luck.

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I will clarify to say that autonomic issues are rarely lethal; some forms of dysautonomia are more serious than others. Most types of dysautonomia are debilitating but not fatal, such as POTS, NCS, NMH, etc. Often, the most damaging thing can be depression that may result from trying to live with a chronic disorder that limits what you can do each day.

Information is power. Read up and ask questions.

Nina

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hi lisa -

i definitely affirm what others have said....first that autonomic disorders are rarely dangerous/ lethal in and of themselves. and second to encourage you to read more on this site and/or elsewhere.

there is merit in being wise about pushing things, i.e. if you're someone who does/ has blacked out it probably wouldn't be a good idea to have your first walk be alone across a major highway, but it's generally a matter of being aware without being overly cautious. unless you have health issues you're not at a higher risk for a stroke or heart attack. so you may feel ill and/or pay for pushing it for a few minutes/ hours/ days, but it won't technically hurt you. one of my doctors (one of the top autonomic docs) told me years ago that most people he sees tend to fall on the side of being too cautious or going overboard with pushing things. (i was one of the later & as such receiving a bit of a lecture on not pushing quite so much). i do believe that there is such thing as pushing too much but that shouldn't keep you from pushing at all. and the line is different for different people and at different times so it's something you - hopefully with the help of your doctors - have to figure out for you.

i hope your upcoming appointment goes well & that you're able to take the risk of pushing more without it causing you too much anxiety. i will tell you that i do not regret one bit of the pushing i've done over the years...even though it probably was a bit extreme at times. by health is now such that i'm not able to do nearly as much and i'm thankful that - however tough it was & however big the price i paid for it - i pushed myself to do things that were more than i "should" have been able to do.

all the best,

:( melissa

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Just want to add to the excellent advice that you have already received that fear in itself can be as disabling or more than the actual illness. and you're correct to suspect that mental limitation is a big factor here. Hopefully, with the blessings of the autonomic specialist that you're seeing, you will get the courage and confidence to start doing more physically.

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Pushing myself too hard and possibly causing a heart attack, stroke or any kind of physical damage was one of my big fears at first. My cardio keeps saying I can do anything I want to - if I feel okay. Obviously, he says, if I have shortness of breath, chest pain and feel like I'm going to pass out, that I need to stop. He says even if my heart rate is high, as long as I don't feel symptoms, I can keep on going.

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B) When I saw my cardiologist yesterday, she seemed almost upset that I wasn't back to working full-time and living my normal life. I just been diagnosed about 9 days previous when I went to an electrophysiologist for a tilt table test. He changed my meds from a beta blocker and a steroid, to midodrine. So when I saw the cardiologist, she acted like I should be back to normal. She basically told me to push myself or I'd never get back to normal. However, I've been pushing myself since this started, and I feel grateful that I manage to work 5 hours a day. And any day I can do one chore around the house without getting dizzy or weak is a good day.

Fortunately, she also told me I didn't need to see both her and the electrophysiologist, and that I should only come back to her if I had a heart problem. I really like the electro and his nurse. They were very helpful and took lots of time to answer questions for my husband (mostly) and I (since I was recovering from the TTT),

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WOW!!!! this is very encouraging........... I have been using my walker alot more and we are so excited!!!

the only thing that is different for me is i have multiple sclerosis along with this autonomic dysfunction :( and I really pay for it, but I have been doing so much more and mentally i was able to get back in the game!!!!!!!! because of all the great advice from everyone here.....my family and I are thankfull to all of you...

love lisa

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