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Pistol

Improvement from POTS?

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Hi - I have a question for all of the forum members that had times of improvement ( @MomtoGiuliana, @Always hoping ) and others. Although I still have to live within a frame of limitations I have lately experienced a slowing of my worst symptoms. I have less sleep problems, less seizures and syncope as long as I stay inactive. In the past I would have those symptoms even with bedrest, now I am able to do mild chores - with frequent rest periods - but have not had need for IV fluids in 7 weeks. How do I know if I am just on a really good and long stretch vs having lasting improvement? ( I know - this may be a long shot but - why not ask? )

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Time will tell. Remission is awesome but there's no way to tell how long it will last. 

 

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Remission is very typical for POTS patients and many do get better indefinitely or for many years.  I went over 10 years of only minimal to no symptoms.  Hoping to get back to that.  It is very difficult to predict a time line.

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Glad you are feeling better. My advice is to enjoy each day without thinking about the future and use some of your energy to exercise and build your strength.  That is critical to long-term recovery.

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Thank you all for your encouragement and advice. It's the first time I have been "good" for this long, so of course my hopes are up @yogini: you are exactly right and that is what I will try to do. I have been exercising enough that now I realize I have muscles where I didn't know there were any!  IF - "if" - I get bad again I can complain and despair then. --- We hardly ever talk about when we feel good but thankfully sometimes we do. 

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I agree with @yogini - enjoy everyday now and use them to strengthen.  I would say very slowly though so you don't set anything off in your system (especially since your not sure why there's improvement).  Just getting moving more now is strengthening.  Keep adding things, exercise or chores.  I remember those forgotten muscles you are speaking of!  Lol  When I started to get back into my "normal" routines as I gradually felt better, each night I would appreciate the aches of my muscles.  It's a whole different feeling of pain when it's a healthy muscle usage pain.  When the muscle aches started to subside, I'd add more.  I will say that my adding more, was actually more chores or activities versus legitimate exercise.  I had so much to do since my house had gone to h*** over the 4 years!  Lol  

Getting my iron and aldosterone corrected were key for me and I hope will hold for the long term.  But I was lucky and found specific things that I could "fix" to feel improvements.  I know not everyone is that lucky.  

I hope you continue to feel good and improve with each day!

 

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I'm so glad that you are feeling better!  The biggest thing for me when I was feeling better was to avoid getting overheated and being really careful with blood draws.  If I didn't get an IV after a blood draw, I would crash again.  Hydration is a key issue I think, so just keeping an eye on that.  

What do you attribute your improvements to?

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@Bluebonnet08 - I do not know ( but I don't complain ). That's why I am so hopeful this time. I was in the hospital for fluids 2 months ago for a flare and since then I am still well! I have to of course live within my means, still do not leave the house and avoid triggers but I only passed out once and have been able to do some chores and sleep well and even could do a little gardening!! I recently got a mild cold and survived without a crash just with Gatorade!!!! --- In the past I would take every good spell with the knowledge that soon I will get bad again. This time it has lasted long enough that I almost am getting used to it!! --- In a few weeks I have to have surgery and go under anesthesia, that will be the end of it, I know but at least I will know who to blame!!!!

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Well - just an update: the party is over. But it was nice while it lasted! Looking forward to the next good spell - maybe I get the other half of my house cleaned then!!!

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