Dysautonomia Say What? A must read to easily understand this complex condition

Posted: March 1, 2014 in Dysautonomia
Tags: ,

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This is a MUST READ easy to understand overview of Dysautonomia posted by Laura at dysautonomia.weebly.com. Check it out below and read the rest of this post at Laura’s site (link below)

Things you can be aware of to help:

Most of all, a person with this condition will want you to understand, believe them, and care- so the fact you’re reading this site shows that you do and that you want to understand more about their condition, so you can help them.

http://www.dinet.org/symptoms

The symptoms listed above refer to POTS but other forms of dysautonomia can be read about on the site too. Read the symptoms so that you are more aware of what your friend or loved one with dysautonomia feels like. All they want is for you to understand and be supportive.

Also be aware of the following…

The Dysautonomiac’s Heart is overworking

I’ll admit it, that’s a made up word to describe a person with dysautonomia, but the rest of this is true: a dysautonomiac uses three times as much energy as you do just to stand up. When they stand, their heart rate is tachycardic (rapid, over 100 beats per minute) and can increase to 120 beats per minute or more. It is like they are running on the spot all the time and so they get tired more easily and find ordinary things harder than you do. They may need to rest before activities in order to have the energy to do them, and they may not be able to do everything they’d like to. After activities that involve a lot of standing or walking, they may be very tired or otherwise symptomatic (dizzy, aching, nauseous, etc) and may need to rest in order to recover.

The dysautonomiac is generally not a ‘morning person’. But it’s NOT their fault and they are NOT lazy!

They are at their worst in the morning. This is often because they haven’t had fluids all night, and people with dysautonomia often dehydrate much faster than other people. The dehydration can cause low blood pressure and dizziness- and as soon as they stand up, their heart rate races which makes them feel even worse. They often need time to wake up gradually, and to stay laying down if they can for a while before getting up. It helps them if they drink around a pint of water before even getting up out of bed, because it temporarily raises blood pressure and can help counteract the dizziness.

They get ‘brain fog’ but they are NOT ‘stupid’!

Due to lack of blood flow to the brain, they can suffer at times with a mental impairment known colloquially as ‘brain fog’. It often gives them short term memory problems- so simple tasks such as remembering to pick something up that they need or ordering drinks at the bar are made much more difficult. You can help them by reminding them of things they need or writing things down for them, and being patient if they do forget something- they are not stupid- and often this symptom can be frightening and frustrating for them.

They might say “it’s part of my condition” a lot- that’s because the ANS controls a LOT of body functions- so a lot can be going wrong! If you think you’re fed up of hearing that, put yourself in their shoes and think how fed up they get actually LIVING with all of what’s going wrong!

As dysautonomia literally means a disorder of the nervous system, they can and do get other symptoms (because the nervous system controls everything in the body), many of which seem strange and can be hard to understand. The best way you can help them is by accepting them when they are at their worst as well as when they are doing well. This might mean accepting that they are not like themselves sometimes due to the symptoms being experienced. They might be more quiet, withdrawn or even sad. The worst thing you can do is say things or act in ways that make them guilty for being the way they are- they can’t help it. If they are tired, don’t put pressure on them to be active or energetic; if they are withdrawn and need space, don’t take it personally. Dealing with the physical effects of dysautonomia can be draining on the emotions so they will appreciate you being supportive in any way you can.

To read more, click here

Posted by http://www.mikshiddenhearts.org.

We serve teens with Dysautonomia and other hidden life-changing chronic illnesses.

Know of a deserving “hidden” homebound or hospitalized teen?  Nominate them for a Hope Kit filled with teen inspired gifts!  Go to our website at www.mikshiddenhearts.org for more details.

 

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Comments
  1. bloggerlenny says:

    Thank you for this post. I was happy, and grateful, to see it this morning.

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