miajnt Posted August 3, 2012 Report Share Posted August 3, 2012 Hi Everyone, I have been reading the board for awhile and am just able to post today. I am a 49 year old woman who was living a normal life, working ,2 teenagers, exercising, eating healthy. I thought I was doing everything right to be healthy and I ended up in the hospital twice in the past month.Tachycardia, difficulty breathing, unable to eat, chest pain etc..I thought I was dying. I was happy to find out I was not dying but I guess now I want it all...a normal life. I am taking beta blocker which helps a lot and gradually trying to exercise...walking. I have not gone back to work yet and not sure if I will be able to. I feel fairly well in my house but going out is another story. I am very weak and my muscles fatigue quickly.Still deciding if it is worth persuing a cause or just trying to treat this. I would like to know the cause of this and the type but it seems like a mission toget to one of the good docs as I live in South Florida and unbelievably there are no specialists here. My electrophysiologist told me on my last day in the hospital this is just an inconvenience !!Im worried this will give me a problem securing my short term disability and FMLA if he tells the insurance I have an inconvenience. Anyone have experience with insurance for these diagnoses??? Well, good luck to all of us and I appreciate any input, advice anyone offers, I have already learned a lot reading all your posts. Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted August 4, 2012 Report Share Posted August 4, 2012 Welcome to the group! I'm sorry to hear that you are on this journey... I had the sudden onset of illness as well, which as you mentioned, is an abrupt change from a previously healthy lifestyle...and they are many of us in that situation.It seems very individual as to whether or not you want to pursue a cause. Personally, I feel like I'm at peace with not knowing (and because there are no clues at all pointing to it), but that may be the stage I'm in right now. I may feel differently if I continue to have no improvements in symptoms. You just have to do what feels right for you.I think comments like the one your EP said are meant to put our mind at ease (i.e. it's not life threatening), but you are exactly right that those kind of comments are not helpful at all. I think it is really important to give your docs a very clear picture of your day to day life, especially when they have no experience with POTS and when you are in a position to be applying for disability benefits. I found that I could never seem to get that point across to the docs during the appt. because there are so many things to discuss and my brain stops functioning effectively part way through. So, I started bringing data with me (blood pressure/heart rate readings from 2x/day in chart form); any extreme symptoms are noted; a list of current symptoms; how it affects my life (i.e. can't drive; can't shop, etc). My hope is that when the docs sit down to fill out the forms, they will refer to this info (even if they state "patient reports feeling..."; it's better than just me saying it). So far, they have been happy to receive it. I keep it brief and concise, so they can read it at a glance. Quote Link to comment Share on other sites More sharing options...
corina Posted August 4, 2012 Report Share Posted August 4, 2012 Hi miajnt, welcome to the forum!Like AllAboutPeace I mkae short lists to bring to my doc too. I can't keep things in mind so that's really helpful. I hope exercizing (walking) will help you feel bettter! Quote Link to comment Share on other sites More sharing options...
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