POTS Syndrome

[beeatrice]

I am so sorry... yeap you have true POTS!! It's exactly what I go through.. I am happy you have a supported g/f..its important to have at least one person who believes in what you are saying~..... you know my cardio told me that exercising in the water will help cure pots... tried it and no..... It was so hard to get out ofthe water Pleaseeeeee let me know how your test went... I am here for you if you ever need to talk

[doyle624]

Hey Bee-
As I figured everything got worse when I saw my doc today. He's upping my Levisin because of the dizziness....and I have to have surgery on my throat. I have to have my tonsils out(no big deal) but I also have to have part of my palet cut out, which if I understand it right, is basically cutting out most of the back of my throat. Apparently when I lay down, my airway is very much almost closed. I had my CPAP test and still had 48 sleep disturbances in 6 hours. All from lack of air to the point of not breathing much at all. My Crohn's has gotten to be kinda rough....and I can't even get a CPAP mask for a few weeks. So I'm pretty much scared to go to sleep and I'm still dizzy all the time. All these problems are wearing on me...my doc said he can only give me meds to calm the POTS but can't start them full force until I have all these other things fixed. The reason being that some of the other problems I have may be making the POTS worse and he doesn't want to overdo the meds. He's a great doc so I trust him....but I feel like my body is quitting on me. I just have to do basically nothing to feel good which is not fun. I'll let you know if there are any changes...ttyl

[beeatrice]

Oh D-
I am sooooo sorry...... but hopefullly the surgery will give yousome relief at night... I know lack of sleep can also emphasize POTS as well so maybe this is a blessing in disguise and onceyou have the suregery youll have more sleep and therefore less pots symptoms...... Its not fair trust me I know..... At 30-33 how are bodies seem to be goinf out.... What will be like when we are 60.... Maybe well keep in touchthat long and when we are both 60 years laugh together and look back at how we used tobe becsue with our luck at 60 we'll be like atheletes and feel awesome!!!! Keep me posted

[sher66]

I am so glad i found your post! My 19 year old daughter has POTS. she has had it since 15. She has been on Florinef since. This past year at college everything got worse for her. We went to an adult electrophsyologist in June and she was placed on a beta blocker (Toprol) what a nightmare that med was for 4 weeks! Then a week ago she was placed on Theadur. My child can not move, sleep, eat. Her stomach has been a mess and her heart rate runs 130 to 180 when she is up. I have decided to take her off the theadur and put her back on the florinef. she also wears compression stockings now. any advice would be great.
sherr

[beeatrice]

Hi D!
Its Beeatrice, Havent heard fromyou for awhile so I hope that means you are doing better?