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Well, I am finally going to introduce myself to the forum. My name is Sarah and I am 26 and live in a very rural area of West Virginia. I was diagnosed with POTS in November 2004 followed by an agreed diagnoses from an EP in Feb 2005. Along with POTS, I was also diagnosed with SVT, Arrythmia/Disrrythmias and ARVD. In March of 2005 I was discharged from the military and subsequently lost all of the current treatments because I had to move back to WV. Since then, I have had some trouble finding any doctors who are familiar with POTS. I was recently hospitalized because of a 2nd heart attack and had another Echo done, this echo came with the diagnoses of Cardiomyopathy and Paroxysmal Tachy, as well as an EKG which told us that I have silent Ischemia. I have been getting treatment at our local VAMC, which has been fair, but I haven't seen a cardio since last year, and can't get in to see one until next month. So I am pretty much just sitting around waiting, and it is frustrating. I am on 100mg of Atenolol (50mg 2x a day), but since the heart attack 3 weeks ago, my BP was so low that now I have to check it 2x a day before I can take my heart meds. I was prescribes propanolol for the Arrythmia, but I didn't care much for the Cardio at the hosp who prescribed it. He met with me for about 10 minutes, completely seemed to dismiss the idea of POTS and just didn't seem to care, so I am waiting to see my doctor before starting any new medications.

Well, I hope that I haven't rambled too much, and if anyone has any opinions or advice, please feel free to tell me. I need all the help I can get from people who know what this disorder does. Things just seem to have gotten worse over the past 6 months and, as all of you know, it is hard to function some days. So I hope everyone is doing well.

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Hello! I wanted to say Welcome! :) I am gald you found us.

After reading your post the one thing I would like to say is if you didn't like the doctor, and felt he didn't listen to your problems and needs.... please look into finding another doctor. I have gone thought a few doctors to find one that really is going to listen to me and help me.

Again Welcome to the forum you will meet alot of great people here!

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Hi Sarah,

My heart goes out to you. Yours sounds like a pretty serious situation. I wish I knew how to really help. I'm very new to POTS though. I'm still full of questions myself. I am your age. 26. I can so relate to your frustration with doctors and the feeling of having to wait til you can find someone to help you. It's so frustrating to deal with this when you are so sick. It's important to keep looking til you find someone you like and can work with. easier said than done, I KNOW! I'm still looking too. maybe someone here can help you.

I know the feeling of having a hard time functioning day by day.

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Guest dionna

hello sarah,

my name is sarah and i was diagnosed with POTS august of 2005. i was discharged from the military march of 2006. wow i can think of 7 things we have in common already. name, POTS, being in the military, discharge in the month of march, the VA has only been fair, none of them have ever heard of POTS, and i have not seen a cardiologist in over a year either.

***the VA needs to hurry up with my claim too!!! i hope yours has gone through.

i was a marine. lol.

welcome to the forum!!!

sarah dionna :)

aka LCpl, USMC Ret.

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Welcome Sarah. Your situation sounds more serious than most. I am sorry you have been so ill. Do you have someone in your life who can play the role of advocate for you? I think that really helps when one is so unwell and not making headway with doctors. I agree that you should not have to wait a month to be seen again considering the seriousness of your situation. Often doctors offices can find a way to fit serious cases in much more quickly than more routine cases--but someone needs to press the doctor's office for that, it sounds. It also sounds like it would be best if you could be seen by an EP, which may mean travelling for you.

Take care and please let us know how you are doing.

Katherine

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Hi Sarah,

welcome to the forum. Most of us have POTS but there are a whole variety of other cardiac diagnoses here too. You sound like you have quite a combination of cardiac problems and I'd echo that you need to be seen ASAP. Sometimes just phoning repeatedly can get you an appointment sooner. Do you live with your parents / someone else who could go to the office and pester on your behelf and explain how ill you are.

The doctor that prescribed the propranolol, did they know that you were already on atenolol? Did they want you to stop the atenolol? Please don't take both together as they are both beta-blockers and you could end up in problems from a really slow heart rate.

((((HUGS))))

Flop

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Hi Sarah

Welcome to the forum. Thank you for sharing your experience. I agree, you should get another doctor, one willing to help and who knows about POTS.

I have been dx a few weeks ago and I am new to many things, but I am sure you will get some excellent informations and suggestions from the forum.

take care

Love,

Tessa

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Hi Sarah,

Sorry to hear of all you have been going through but glad you found the site. I too agree with the others on persisting that you be seen. Your age and the crisis that you have gone through should raise red flags for them that you need to be under a dr's care. One who can handle it all or at least be willing to consult with others.

I'd keep calling also or like someone else suggested, to get an advocate, mom/dad, sis/brother,,someone who can call and spend the time explaining your situation and the need to be seen a.s.a.p.

I hope you get the help you need soon. :)

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I was thinking I should modify what I wrote. I said tell them "you must see him"- it won't help to demand- but to plead. Explain your case. And I've been told that if you go to the ER and complain of chest pains you will get carefull attention.

I think it is urgent that you know the treatment pain. You might consider the ER if you find that you feel its urgent too. And as a 50 year old who could be your mother- I suggest you tell them that you have chest pains- you think its stress- BUT?????

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hi sarah -

i just wanted to chime in with my welcome. i'm glad you found the forum though am sorry you have reason to be here. i'm about your age (27) and while i haven't had the cardiac complications that you have i'm pretty extreme as far as systemic problems go so can empathize with being far outside of the "norm" as far as the more typical autonomic patient. and while i never actually was commissioned, i was on a military scholarship in college (which got derailed due to my declining health.)

while i don't want to discourage you from trying to get into the doctor sooner as others have mentioned, i also don't want you to feel discouraged if you're not able to do so. in the world of specialists, they actually often consider a month's wait in the "urgent" category. i do hope that you already have and/or would encourage you to seek out a primary care doc that is willing to partner with you as you navigate the medical maze, though i know that this in and of itself can be VERY difficult to secure.

hang in there,

B) melissa

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