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Worsening or improving condition over time?


king_saladin
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Does dysautonomia most commonly stabilize at a certain severity, or does it often get better or worse as years pass?

Or is it quite unknown?

I'm quite clueless - I always figured that it nearly always stayed at the same level. I've searched around but cannot find much information on the subject.

Also, does anyone know if symptom management may play a part in long term progress? Or is symptom management completely and only for short term improvement?

Thanks for any info!

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Depending on the type of dysautomia you have, the answer changes. Pure Autonomic Failure (PAF), Shy-Drager, and Multi-System Atrophy (MSA) tend to worsen over time. Other types wax and wane, and some people get better altogether, especially if they had a sudden viral onset.

Please see the main section of DINET for more information on the types and causes:

http://www.dinet.org/what_causes_pots.htm

as well as treatment information:

http://www.dinet.org/what_helps.htm

Nina

Edited by MightyMouse
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Guest tearose

Another tough question....we are like snowflakes...we all have a melting point but are all so unique and different with the way we present our dysautonomia!

I have days of strength and of when I don't need my seat cane to go out and do errands...but those days are few now. Years ago, I didn't even need a seat cane. Years ago I never owned a walker, now, I have two. I fact, I have several canes, black with red roses and white with pink roses, and a plain one I got from physical therapy and one hand carved from Poland and one hand made by a 92 year old family friend and two foldable canes...In 1991 I would not even have imagined I could go on about my "assist devices"! We moved to a fully handicapped equipped one-level home this past fall because of my "condition".

But, we are all so different.

I work really hard to keep up my strength without overdoing it! I have not physically improved over the years. I take no medications and manage my dysautonomia through all behavior modifications. Symptom management is an ongoing part of my life. There have been times I needed physical therapy and even occupational therapy! It is a full time job just taking care of me! Every day, to the best of my ability, I try to: get up, eat breakfast, count my energy points, do a bit of movement exercises, get washed, lots of time for dressing which includes donning many compression garments and a heart monitor, and then see what I can do. I can only do what I am physically able to do. My mind and intellect are in full swing, well, unless I'm in a spell of brain fog...it is an understatement to say I get frustrated. I have only "checked in" with a psychologist to get certified that I was not depressed. I read, meditate and pray and have not found an appropriate chronic illness counselor so I do loads of "self help" things to stay emotionally strong and healthy.

Not all have presented with my set of symptoms. I hope that many have improved and just don't bother to post here anymore cause they got on with life without needing this forum...

I hope that you will find that your case improves and will be able to move on to other things!

hope this answers some of your questions...

best regards, tearose

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Thanks for the replies :lol:

Depending on the type of dysautomia you have, the answer changes. Pure Autonomic Failure (PAF), Shy-Drager, and Multi-System Atrophy (MSA) tend to worsen over time. Other types wax and wane, and some people get better altogether, especially if they had a sudden viral onset.

Ohh, I have a general orthostatic intolerance... very similar to POTS but I don't think that it technically is POTS because my heart rate doesn't fluctuate very much from sitting/standing (just blood pressure)

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For me the onset was sudden - after heavy exercise too early after a viral infection. I was dizzy, spaced out and palpitations, tremors and felt like **** basically... My condition has gradually improved to the point where i am virtually symptom free for days on end, but the progress was slow. It has been a year and a half since i got ill.

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