HOW LONG?

Does this condition ever just go away?

[molly0]

Some people outgrow their symptoms, but others have them all their lives.  My mother began having symptoms when she was in her early 20s.  She had frequent symptoms for about 3 years, then apparently outgrew it.  She is now in her 70s, and quite healthy.

My mother had 5 kids (all girls), but only I was diagnosed with POTS.  I started having symptoms at age 16, and now at age 41 I'm still dealing with it.

My cousin began fainting due to her dysautonomia at age 8.  She was put on a high salt diet, and took some kind of medication to help control her symptoms.  After almost 2 years without symptoms, she stopped her medication at age 11.  A year later the symptoms reappeared with a vengeance.  She unfortunately she took her own life at age 15.

My oldest daughter Julie (age 19) also has severe dysautonomia.  While my symptoms are well controlled with Florinef, hers come and go regardless of her medical treatment.  The treatments help without a doubt, but just as she gets her hopes held high, her symptoms mysteriously reappear.

Does it go away?  Sometimes yes, but not always.  Can it be controlled with medication?  Sometimes yes, but not always.  Will I ever give up hope?  Not a chance!

[molly0]

While we're on the topic, anyone else have a family history of autonomic problems?  I know some people who do, and others who don't.  My doctor says it can happen either way.

[halbashes]

I'm sorry to hear about your cousin.  I can understand how difficult it is to deal with Autonomic Dysfunction though.  I hope you and your daughter are feeling well.

As for my family, my mother had undiagnosed fainting issues in her twenties that were likely related to Dysautonomia, but luckily she's grown out of it.  My younger sister probably has mild undiagnosed Dysautonomia as well, but she doesn't faint from hers.

[dolfnlvr]

I'm the only one in my family ever to experience fainting problems.  Lucky me :-)

[paula9002]

I was first treated with medication for fainting and rapid pulse when in my early 20s, although I would have trouble with it each time I got sick, had surgery, etc.  It went away when I was about 26 and I was off of medication for roughly 10 years.  Still, when my body was stressed, it would react by bottoming out my BP and that would speed my pulse up to over 160 bpm, but I was treated by doctors very short term and my body always returned to manageable.  In 1991, however, it came (with nausea, passing out, chest pressure, headache and "white out") and has now been the treated with Inderal for about 13 years.  I took the florinef first, hated it and gained weight, then lopressor which worked part of the day, proamitine which put my BP through the roof when I was sitting or laying down, and finally the Inderal after a tilt table verified autonomic neuropathy.  Now unless I have been sick or stressed by surgery, it is controlled most of the day.  Good luck, it is miserable to have to arrange your life around being able to sit or lay when symptoms hit.

[stacey555]

So it sounds like your system is much like mine in fact my problems all stated when I had a small surgery.  Have they ever checked your adrenal systems or any other physical problems that could cause a stressed out system?

[paula9002]

They did cortisol studies the first time I had surgery and had problems (BP was 84, only 84) and I ended up back in the hospital for two and a half weeks until it stabalized.  I was hit with a laundry list of symptoms and diagnosed by muscle biopsy with mitochondrial myopathy.  So it is constantly stressed and any sickness, surgery, etc. throws it over the edge.  Since there are not many who have it and since it affects people differently, they take the "try this, try that" tact of treatment.  Most recently, they tried giving me steroids to help with the stress on my body hoping to keep symptoms at bay.  Did not work the way it was supposed to and so I just had to wait it out until my meds worked again.  Do you have more problems with yours when you are sick or very tired, heat (don't sweat either), etc.?  What are you taking for it now?  My cardiologist tells me that I may need florinef again at some point (I hated it and it took me forever to get the weight off).  Do you have to take it when you have surgery and then can get off of it?

[stacey555]

They have not diagnosed me with anything yet although my natural doctors have mentioned mitochondrial stufff.  I do take something natural for that. Funny you should mention, I do not sweat at all I have been telling the doctors that for years and they look at me like im crazy, that must be why.  Yes I feel awful if I work to much, dont sleep enough ,fly, go in the heat get sick and surgury almost killed me. This is crazy.  How old are you and what kind of doc diagnosed your cond?  What meds do you take for it.  If they had you on florinef that is an adrenal horemone so it does have something to do with that,

[paula9002]

Hi.  I went from doctor to doctor with them thinking lupus, ms, etc.  Then I was sent to a neurologist who felt that I had something out of the ordinary and sent me for a muscle biopsy.  I was diagnosed when I was about 34 (I am 54 now) by Duke, where my muscle had been sent for testing.  He also told me that the heat intolerance (and not sweating) was part of the same autonomic problems that affect the BP.  It also can affect the stomach; but of course so can the mitochondrial myopathy.  It has always taken me longer to get over illness or surgery than most everyone.  There is not a cure nor a real treatment for the myopathy.  They recommend that you take CoQ10, L carnitine and creatine to preserve muscle.  The reason we feel so bad after activity is because our muscles break down and because use of "certain mucles".  It is progressive.  It was very difficult for me to adjust to the limitations that would keep my body on an even keel but it has made my life easier.  I will have to finish tomorrow as I am sitting her falling asleep.  take care,

[paula9002]

Sorry about that.  I probably should have waited until today to answer to start with but thought that I could finish first.  Anyway, they put me on florinef to help me to retain salt and they also gave me salt tablets.  I was not able that last time to stand up long enough to get to the bathroom and back into bed.  After two plus months of this, they admitted me and thinking that added fluids from the florinef and compression stockings would help and it did.  I could stand up and keep moving for about 15 minutes but could not stand still in line, at the sink, etc.  The tilt table study they sent me for is what lead me to taking Inderal.  There are still days that I don't go far from home and never know when they will be (that is the worst part) but it is not too bad other days as long as I am careful.  What kind of natural medicines do you take?  How old are you?  How long have you been sick?  Can you still work?  Children? Siblings? Relatives? (are they all okay?)  You would be surprised to see the list of diseases that are tied to this but it can also cause some problems with your heart, vision, etc. many of which can be treated.  Are they telling you that they are going to do further testing any time soon?  Talk to you later.

[miro51]

I was reading your stuff and saw some similarities to what am experiencing but would like to know what is POTS?

[stacey555]

it is hard to explain but basically it is dysfucnction of the autonomic nerveous system.  look on the pots web site.  pots place.com i believe