Dysautonomia (Autonomic Dysfunction) Community
I'm not a b$@ch I promise..
About This Community:

This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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I'm not a b$@ch I promise..

Hi there,
I have just been diagnosed with pots and am so scared about the impact this will have on my life.
I am a business owner and at the moment I feel like its going to go down the tube because I'm neglecting it so much.
Some days I can't even muster the energy to reply to emails or answer the phone.
When I do go into work by brain fog means that I sound like an idiot most of the time (not good for business!)

I am also very sad about how this affects my relationships.. I have no children and my boyfriend left me just before I got diagnosed. I have had this all my life and know now that it is the cause of my inability to hold a relationship.
The mood swings, the lethargy and the irritability... Not so attractive is it :(
(The small consolation is that I now know I'm not a "*****" as my last boyfriend described me.. I am just ill).

I have no one to talk to about this so if there is anyone that can relate to those 2 things, I'd desperately love to hear from you.

Thanks in advance
4 Comments Post a Comment
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875426_tn?1325532016
I and my sibling both have been diagnosed with P.O.T.S.- I was diagnosed back in 2004 and my sibling, this year.  My sibling is taking midodrine which is helping some, but not a hundred percent.   I don't take medication for mine, just live with it with some adjustments to my lifestyle.

Are you able to apply for disability there in Australia?  

Did they suggest any treatment to you?

I'm sorry you are having trouble relationship wise.  Some guys don't seem willing to handle a relationship with someone who is disabled in some way.  Some, like Joni Eareckson Tada (a paraplegic due to a diving accident), get a gem of a husband who is.  
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Thanks for your reply!
I'm glad to hear that you are coping without medication. That's what I want to try and do: lots of salt, water and exercise seems to be all I can do.

I think I sounded a little overly dramatic in my first post because I am definitely not disabled by this, i am still going to the gym 4 times a week for an hour and I'm going in to work today., I just never know if its going to be a "good day" or a bad one (a bad one is staying in bed for the entire day because I can hardly move)

Does anyone know if there are degrees of this syndrome, for example I may have it mild compared to most and hopefully it will one day go away
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875426_tn?1325532016
I do believe there are degrees of disability and varying degrees of P.O.T.S..  For example, some faint who have the syndrome, while others do not.  While my numbers seem dramatic at times to me, I imagine my case would be considered a fairly mild form and the one time I've fainted, it was induced by nitroglycerine on a tilt table test.  My sibling is more affected by P.O.T.S., having trouble (some days more than others) even though taking medication, head ringing, etc..  

It's been said some people have P.O.T.S. go into remission.  While I've had periods where it seems to be improved, I don't know that I've experienced any remission like has been spoken of.  Diagnosed over 8 years ago, I'm a lot more adjusted to it than I was when I was newly diagnosed.

I encourage you to keep working out at the gym as you're able, because deconditioning is not a good thing for people with this syndrome.  I recommend though that you keep track of your pulse to make sure it is not racing at dangerous levels there!
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4506709_tn?1355630318
I think I have this, I have been struggling with something since 2008. I have passed out more than once, now my feet turn purple when I stand. I get vertigo sometimes, dizzy spells and morning are rough when I try to get out of bed, I get a horrible headache and everything tturns white, and chest hurts. Tired constantly, muscle aches...ect. I could go on and on. Does this sound like any of your alls symptoms? How did you guys find out you had this and where do you start with finding a diagnosis. And...after researching I am scared with what I am seeing on prognosis. What are your alls drs saying about a prognosis? THanks so much, Kristin
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