Hi everyone, my name is Kelsey and I first want to say how excited I was to find this site! I have been recently diagnosed with POTS and have been lost and angry for a while. This site has given me hope to answers and a better quality of life. Starting January 15th, 2013 my life changed dramatically. I was a stay at home mom of two children, my daughter (now 6yrs old) was in kindergarten and my 3 yr old son stayed home with me. That morning, like any other, i wasn't feeling well. I was tired and just out of sorts but that was my norm so I went on about my day, sent my daughter off to school with my husband as he left for work while my son and i vegged for a bit watching his favorite shows, around 8:30 he wanted breakfast so I reached up to the shelf to get the cereal down and woke up on the floor to my 3 yr old screaming "someone help me my mommy died" as he sat on my chest and cried. I was terrified, i hurt something awful, and i had no clue what had just happened. I instantly calmed him, got him to go get my phone and i called my husband while sitting on the floor terrified to stand, shaking and exhausted! This started our journey! My husband rushed home and took me to the dr. I explained how my heart just started racing and then i woke up on the floor but they had no clue what caused it. I left the dr's office with no clue what had happened or if it would happen again, all they said was "well your fine now, call if it happens again". I was scared to be alone during the day so we "moved in" with my in laws till we figured out what was going on. The drs said my blood pressure was a little low but fine which was unusual bc i was always text book 120/80 and now i was 95/60. my blood work was normal, everything looked great but i felt AWFUL! I was being treated for depression and anxiety and thought maybe it was a drug side effect but that was not the case either. The night things got worse, i went up the stairs to get in the shower, when i got out of the shower i passed out again banging myself up pretty good, when i came to i was depleted of all energy i may have had left and just wanted to go to bed so my husband helped me scoot down the stairs (which by the way are now my arch nemesis) but going down didn't go as well as going up, i passed out clipping my husbands legs out from under him and took us both down the stairs the hard way with him on top of me (his description is much more dramatic and vivid lol). Starting the following day i was passing out anywhere from 3 to 7 times a day and was limited to doing almost nothing. We went to a different dr asap, that dr got me into a cardiologist and a neurologist. Let the testing begin.... i've done holter monitors (in office and 24 hr) both stating a jump in hr but nothing to concerning, EEG (in office), EKG, ECHO w/bubbles, MRI, MRA, CT(with and without dye) every thing came back "normal". They were starting to say it was all in my head, that i didn't really have these issues and i was soo frustrated bc i felt like no one understood or believed me. Finally one night while very doped up on pain meds from all the fainting injuries we had a sort of break through. i passed out and my family couldn't get me conscious for more than a few seconds to a minute. They called ems and rushed me to the hospital where i continued to fade in and out and was admitted. my hr kept jumping but they couldn't figure out why so they after two days there they sent me to Baptist where we did the 24hr EEG and they officially ruled out a lot of things but didn't diagnose me. One of the drs there decided to go out on a limb and put me on the tilt table. laying there i felt fine, i was talking to the nurses running my test and they told me the were going to stand me up and if i felt any different to tell them. Well they set me up and i remember saying "Going well....oh no not so." and then they were standing over me. my hr jumped from 86 to 127-135 (fluctuating for a min till they laid me down) but my bp didn't change much. The cardiologist there "labeled" me POTS but didn't give me hardly any info, as the other drs before her i was told "well go home and cope the best you can, nothing we can do for you". So at this point we leave baptist, go back to my pcp and he sends me to a psychiatrist bc in his words "People with POTS don't faint this often". The psych tells me i have extreme anxiety causing the fainting and medicates me, which seems to be helping with the anxious feelings but my lifestyle changes are whats helping the fainting, not the meds. The drs are still trying to "figure me out" as they put it and i'm so frustrated!! I can't drive, or be alone with my kids, my life is so different now and its hard to adjust. Over the last 6-7months i have discovered a few things on my own through trial and error, and research. Heat is a no go for me, anything outside when its 75 and up puts me down, flying is an all out nightmare!! i could barely stay awake during take off/ landing, car trips to the mountain are hard as well. showers in general just don't happen but i can't sit in hot water for a bath either so i must sit in the tub with the shower wand. activity is limited and at times i feel like life is just over. my doctor isn't really "treating" me at all, he has little to no info, and tells me to just try new things and if it doesn't work don't do it. Any advice or help you can give would be greatly greatly appreciated bc trying to learn on my own has been a nightmare and just knowing there are people out there who will hear my symptoms and not say i'm being a baby or its all in my head means so much to me i started crying! so far all "triggers"/symptoms are fairly well maintained but still annoying!! the constant fatigue is one of my biggest issues, the syncope was/is very rough but for the most part is now maintained by paying close attention to my hr (while i can't stop the spike in hr i now notice little signals i never saw/felt in the begining), new breathing techniques to maintain a low lvl hr, elevating my legs often, avoiding stairs and elevators when possible, avoiding stressful situations or anything that gets my hr going fast, major water and salt increase (i crave salt so badly i will literally eat it plain straight from the shaker), dizziness still hits from time to time but isn't too bad, i can't power clean like i used to i have to take it slow in everything i do with lots of breaks. I know i'm doing better but I want to drive again, i want to play with my kids and live an active lifestyle, will that ever happen for me? am i destine to live like this forever? what can i do to make it better? has anyone actually recovered from this? my daughter, bless her heart, was asked if she wanted to climb in bed with mommy while i was at the hospital and her answer was "NO!!! i don't wanna catch mamma's passing outs!" and as precious as it was, as much as she made me giggle, it worries me that it could be something that will be passed on to one of my kids. does anyone have more info on if genetics play a role in this? I know there are many more questions i want to ask but my memory is also horrible now and i can't think of any of them at the moment. I just want to thank all of you in advance for any help you my have, and just to thank you for being here and letting me know i'm not alone! God Bless you all!
