Hello I'm new

[Kimberley]

Hello Everyone. I'm new to the Forums. I've been looking at the posts alot since August when I was told I had POTS. Seems Helpful But I do Have some Questions. Hope someone can help. I've been sick off and on for about as long as I can remember. I always went to the doctor and was told I had the Flu, Sinus infection. sometimes sent home with anitbiotics and that's it. It seemed like I was always comming down with the flu ALOT I thought. A little over a year ago I almost passed out twice in one day. I did not go to the Hospital, just home to bed, was very extremley Dizzy and nauseated and had a headache that could kill a moose. So a week later I went to My family Doctor. I was told this was vertigo, probally left over from a viral infection so I was sent home, The next week Still VERY SICK went back to the Doctor They ordered a brain scan, Came back OK, sent me to a Nerologist Seen Him for Migraine. I explained to him that It is the Dizziness and Nausea that start first tham after a while I get a Headache too. So I did not feel it was just a Headache. So I get sent for lots of tests Hearing Sight, they came out OK. Then Went for a Tilt Test I only Lasted 4 minutes. They could not do a second part of the test because right before I passed out I got very upset and Loud, I was scared I felt myself shutting down, Could not breathe, Felt like I was going to die. So they stopped the test I guess right when I passed out. I remember waking up all sweaty and cold, Here is what they say EKG showed Sinus Arrythmia, What is that? I tolerated 70 degrees tilt for only 4 minutes, Flattening of T durning Hut, What's that? Then they did a Blood Volume Test They say I have Postural Venous Pooling, Probably normal autonomic reflexes. They have me on Lopressor and on effexor. Is this a Heart Problem or a Circulation Problem? Also, Can I get a Stroke from this also? Thanks.

[WifeofPotsMan]

Hi. I know that there are probably people here with more knowledge on this topic than myself. I do know from seeing my husband experience so much of what you're talking about that it can be at best unsettling, at worst frightening. Hasn't a doctor gone over this information with you? Of course I know from personal experience that sometimes it is very difficult for one to get a straight answer from the doctor. They like to be evasive at times. I have found this to be especially true if the doctor isn't quite sure how to treat you. I can tell you that sinus rhythm is what they call the heart rate when it's normal. So when you had a sinus arrhythmia, means that your heart wasn't beating quite right. It sounds as though you had a positive tilt test, which means that it showed problems. From my experience with all of this - which isn't a vast amount, my husband was only diagnosed in July of this year - sounds like the test just confirmed the POTS diagnosis. My husband has a lot of cardiac involvement. It seems to me that the cardiac and the circulation problem seem to go hand in hand. My husband has a lot of pooling in his extremities. He also has a lot of tachycardia, skipped beats and arrhythmias. If there is one thing that I've learned from all of this, it's that each person with this condition has similar problems, but each one is individual. I think if you continue to read the posts you'll find that sometimes what worked for one person, didn't work for another. As to your question about a stroke, I don't really know. The best advice that I can give you is to get with a doctor that is sensitive to your condition and willing to help you and LEARN . Good luck! Write in again & let me know how you're doing.

[hilfgirl33]

Kimberley,

I don't know the answer to your questions. I have POTS but have never had a diagnosed true arrhythmia. I do know some arrhythmias are not harmful, and some can be dangerous. I am sure (i would hope) that your doctor would have informed you if anything truly dangerous is going on. My advice is to keep pestering your doctor or find new doctors until you are satisfied you understand what is going on. YOu are your only advocate!!

Elaine

[ethansmom]

I also am not sure of the answers to some of your questions, and I don't want to try to answer them and steer you wrong, but I will agree with the previous post that you need to make sure you get the doctors to work with you to find out what the problem is. You have the right to ask questions and to find a doctor who is knowledgeable about POTS who can treat you. Have you seen the list of docs?

http://www.ndrf.org/physicia.htm

This is a great link. I did want to add that based on what I know, POTS not a heart or circulation problem specifically, but rather a malfunction of the Autonomic Nervous System. I will post another link that I hope might help you understand things better:

http://www.pediatricnetwork.org/medical/OI...ohnshopkins.htm

Good Luck, and keep us posted on your progress!!