Just Diagnosed

I have only talked to one doctor that has even heard of pots. I've never talked to another person that has this, and would like to. I finally found a name for all these problems that I've had over the past few years. Now, I'm just waiting until that day when I won't be able to stand again. I'm a stay at home mom with 3 kids, now I'm unsure if I'll be able to continue taking care of them.

impetus impetus
8 Responses Jan 13, 2009

I feel you I have 3 boys.I was diagnosed with Pots last year and it has been a struggle.In the beginning I couldn't even get out of bed and when I did my heart would feel like it was running a race .I ended up in the hospital where I stayed for about a week with no answer to what was going on with my except you must have anxiety.My heart rate was out of control so they would not release me.Then my hero came he was my moms heart doctor and he knew just what was wrong with me and now I'm on my road to recovery.I find that riding my bike helps me and drinking lots of water I mean lots of water.It still takes me down sometimes where I cry all day I fell like nobody understands.I pray you get better

my daughters pot is getting worse by the day, now she faints 2-3 times a day, she cant drive anymore and attempts to work but everyday is a struggle, i pray for a cure to help her, today my 6 yr old grandaughter called me from work to tellme her monny passed out again, its scary

We all are so proud that we finally have a diagnosis, then we realize there is nothing really that we can do. But let me assure you as bad as it may be you will find ways to do things they just have to change a little sometimes. I have learned kids can really be a big help and you still get to bond and learn together. For instance I can not stand at the stove to cook, so the kids help me gather all we need for dinner at the kitchen table then we mix things up. I sit on the counter top to watch the food and stir, I will crawl when I can not stand ( the kids think it is funny so we all get a laugh) oh yeah use socks on your knees and tie them around to help with the floor being so hard on your knees. These are just a few things I do. It is my way of saying it may get me down, but it will not stop me.

I don't have children, so I can't imagine how tough this must be for you. <br />
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I went through a period of time when it was very difficult to stand but things improved. I switched doctors, tried a different beta-blocker and did my best to reduce stress, get enough rest, eat fruits and veggies, etc. <br />
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It's a slow process but from what I understand, most people get better over time, especially if they are finding the right recovery process for themselves.<br />
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Wishing you the best!

I am a mother of two girls and I just got diagnosed with this P.O.T.S., I've been going through my episode for quite sometime now, it hits me more whenever I sit down, and lay down... so almost every night when I go to sleep, I wake up feeling like my head, face, is semi numb, my hands and legs get tingly and are really heavy, my vision get's blurred and almost tunnel like... my heart goes fast, then slow, then fast... I'm alone with my girls all the time, I often get scared that I am going to pass out, and what is going to happen to my girls. I don't like this at all... I hope I find support here.

I really understand the feeling of being scared that your going to pass out. I had a really bad episode yesterday, almost passed out but it really freak me out. for more of my story I created a website, about me, and my treatments www.aviationsupplements.com

Me too! To a T:

I am a stay at home mom of two daugthers. I have been lucky to have a support of family and church family, but I know it is hard when you feel like you can't do anything and you feel like your family is struggling. My girls have come custom to eating cereal and p&b sandwich for dinner. I am just lucky they are school aged.

Hi, I am to a mother of 3 young children and I have the help of my family to take care of them. I have had several months of not being able to stand.......but I have improved some so never give up hope. And remember this can (hopefully) go as quickly as it arrived and not all patients with POTS reach the stage were they are bedridden. As with every illness it hits people with different strengths and symptoms. Feel free to get in touch with me if you would like any advice or support.

Where do you live? There is a DR. Karen Friday that works at Stanford hospital that is very knowledgeable about POTS. She may be able to help.