Seeking reassurance

[Wufflebear]

I keep wanting to ask this but then not doing it but I think I will just do it.

I read somewhere that POTS and NCS are benign...It is not secondary to anything in my case..It just is..Is that true?? It can't really hurt you? Sometimes when it feels so crummy I get worried and this last spell just won't quit. All thoughts are appreciated and sorry if I am being a baby.

[Guest Julia59]

Your not being a baby---not at all. We all have fears, but I have not heard of POTS or NCS being life threatening. The spells come and go---and some like to hang around for a while but they shouldn't hurt you. You need to be careful if you pass out a lot---especially if going out so you don't fall and hurt yourself.

If possible have someone with you when you go out if your feeling a little off that day, mainly to prevent you from falling if you feel like passing out. Some of the symptoms can be scary, but we all get them, and we get through it.

There's all kinds of information on this site to help educate you on what to expect with POTS and NCS---and also other forms of dysautonomia. Always make sure you have fluids with you---gatorade or water---something to keep you hydrated.

Here are some links that might be helpful:

http://www.potsplace.com/what_helps.htm

http://www.potsplace.com/what_to_avoid.htm

I hope this helps a bit.

Take Care,

Julie :0)

[dawn]

You are not being a baby. I have thought I was dying for the last 13 years. Most days we feel like we are. I struggle to accept this illness (obviously). When you feel soooooo sick, it's only natural to think something is very wrong. I have been reassured by the best at Mayo that this is a chronic illness and is NOT life threatening.

Hope that helps.

Hugs,

Dawn

[Jacquie802]

Hi,

POTS and NCS may not be life threatening but they sure are debilitating. There are soo many things that I can no longer do because of the POTS/NCS. The thing with having spells is that you never know how long it is going to last. The hardest part for me personally is that I have a few good days, then all of a sudden there are bad days that last longer. I am thankful for the good days, don't get me wrong, but it's hard being able to do one thing on a good day and then on a bad day you have to use all your energy just to sit or stand up. Here's to more good days!!!

Jacquie

[EarthMother]

{{{{gentle reassuring hugs your way}}}}}

When you are feeling SO bad -- can't get up, walk, eat etc. -- and have been in a POTS hole for a long spell, it IS hard to believe that there isn't MORE. Something really sinister that must be causing this. The wonderful thing about this board is the rich history and wide range of experiences.

It is so reassuring to see that many of us have been "down" for months at a stretch and then gradually made our way back to some version of normal. For me "normal" looks like working in a very flexable environment where I can take long breaks (especially at lunch when I go home and lie down) and I work part time at home via the computer especially on really bad days.

I can do 10 minutes on a recumbant bicycle, while lifting three pound weights .... but a few years ago I was totally bed ridden and unable to sit up for even 2 minutes without becoming symptomatic.

While it is true that the future is uncertain ... one thing we can count on is CHANGE. Rest assured this will pass ... new adventures are around the corner. And you have a wonderful network of caring and informed people here who will be cheering you on.

Good luck on your healing journey.

EM

[Wufflebear]

Thanks to you all!

Last night I had about two hours where I felt fine and then it started coming back again. Thats the part I hate the most I think. Sometimes I don't realize how bad I feel till it goes away and I feel so "light and fluffy and clear" and then whammo I am back in it..to varying degrees....but definately back in it and definately not "light and fluffy and clear."

Thank you all for being so wonderful! It helps to know I can ask any question here and get a good experienced answer, without the doctor looks. (-;

[yikespanic]

Your not being a baby! I know just how you feel. Some days after feeling ok for a few days then it all comes back again can be really depressing for me. When I finally got a doctor who had some insight into my symptoms and took my BP possitionaly and said no wonder you feel like passing out[ and then said don't worry no one ever died of this, your going to be ok. It still feels like how can something that can give you so many overwhelling symptoms not hurt me? Even though I know this it' somehow shadowed by all the wierd symptoms and fear. Especially when I lay down to go to sleep at night and my heart feels like it is racing out of my chest, but when I take my BP it says it's ok. How can it feel like that and still be a normal reading? I just don't get it. It's just plain scary. I worry that my heart will wear out or worse. Don't ever think your alone, we all know how you feel and care.

Kim

[DSM3KIDZ]

Well I know exactly how you feel as I just posted something similar. My doctor says this illness is not terminal although somedays you probally wish it was. But it is a chronic illness and we just need to find a way to get symptom control...which is hard for me because most of the meds make my symptoms worse.

I know how hard it is to have good and bad days because on the good I'm hoping it was my last bad (spontaneuos recovery?) I actually enjoy my good days sooo much that I forget that I have this illness and then of course a few days later I get the reminder.

Your not a baby and this illness is scary but just try not to think to far in advance. And extra worrying will probaly make your symptoms worse so try to relax and keep keeping on.

Dayna

[Wufflebear]

yea, monday and then wed were terrible (wed not quite as bad) and now I feel like my heart is just bruised...like it has been beaten up. I suppose it is no wonder... But I wonder if it will just plain wear out sometimes!