i'm laureejo, i'm 15 year olds and i recently got diagnosed with pots. they're pretty positive i've had it almost my whole life. i've always been a pretty sick kid, when i was little i was in the hospital a lot for dehydration and i would get dizzy very often. i missed more school then most of my friends because of stomach pains, nausia, dizziness, too tired. all that fun stuff but in januay of 07 is when it started getting worse. i started throwing up constantly and i was in so much pain. then i got better and then the next week it started again. i couldn't keep anything down. i went to the doctor in my town, and they said 'oh it's just a virus' i've always felt something was wrong with me, but my doctor always says 'it's just a virus' like when i was in 7th grade and felt weak all the time, but it wasn't mono he said it would just pass and i needed rest. anyway, i went back a month later annd i got refered to mayo, i live about an hour away from rochester thank god. so i went there and they thought i had chron's disease and so i got countless tests, 'everything was normal' which really bothered me since it felt like they thought i was making it up. after i got protonix, to settle my stomach, i was alright through the summer, i exercised a lot which probably helped. but headaches started to become a problem, they doctor said it was tension headaches. once school started up again was back to feeling weak and sick all the time. i kept going to school but then on christmas eve night i woke up and was throwing up literally every 15 minutes and i had to force myself to get up because i coudln't walk, i had to crawl to the bathroom. i was in the er for about 6 hours getting 4 liters of fluid. for the rest of christmas break i was very sick, the pain in my stomach was extremely bad. so i had to go to mayo again, getting even more tests. i stopped going to school in late december, and after about 3 months of bed rest basicly, the dizziness started to get worse, my legs were in so much pain i coudln't sleep. since the gastreoanologist? ha i have no idea how to spell it, didn't know what was wrong i went to an immunologist at mayo, who talked with me for two hours. since, my stomach was the main problem, i just talked about that, but then my mom told him about all my other symptoms i had told her. i had thought they were all normal, because i'd dealt with it for so long. but she didn't think so. he saw that my blood pressure was pretty low when i was sitting so he decided to take my pulse and blood pressure when i was standing. when i stood up my blood pressure dropped to 80 over 40 i think and my pulse went up to 152. so he said i had an autonomic dysfunction and i got refered to docor porter who specialises in that stuff. i got the tilt table test, and it as determined i had pots. that was in march. i've yet to find a medicine that helps, but i'm trying the other stuff like exercising, right after eating helps me. and high salt diet, fluids, that kind of stuff. after researching this, it amazes me that i have so many of the symptoms. like a lot of days, i don't feel sick, just so weak. and the brain fog, the cold hands, sweating, so many symptoms i have and no one knew what it was. this has been such a hard thing to deal with, it's been so frustrating. i 'm still not able to go to school and i feel so alone, not having anyone that understands. i'm very greatful i found a forum for people with this :]

Hey, Laureejo,

It's me again, Judielise. Glad you came in here. I know others will chime in and say hello.

Also, do you know about dynakids.org? It is a youth group for kids with dys/POTS, etc. Check out the website and if you want to join up, your mom (or dad) can go through the steps. My son is active in the forum there and so am I.

Even though you have been going through for a long time, it is always better to have more people around who understand.

Take care,

Judi

Hi Laureejo,

Welcome! Sorry you are feeling so sick, but thank goodness you have now gotten a diagnosis and can work on treatment.

Have they tested your vitamin levels too? Maybe there are some issues there contributing?? (Just maybe).

And KUDOS to your mom for realizing that all this was not normal and pushing the issue with the dr.

Good luck.

Hi Laureejo

Ive been suffering with POTS for about 2 years now and have a lot of similar symptoms-nausea, pain, low blood pressure, fast heart rare, excessively hot,headaches, dizziness/fainting. They vary so some days I have no pain and other days I hav pain in my legs/chest/stomach.etc.
My new specialist has said that my pain might be because of a condition called hyper jointmobility so Im going to have even more tests to see if thats the case. I find it difficult to trust anything the docs say to me anymore bacause I was mis-diagnosed a lot. I was also told at first it was a virus and they think that this started my POTS. I also find it difficult to cope as Im quite young and I feel like Im missing outon everything!even when people try to comfort me or make me feel better it doesn't work because I know they can never understand.
I should be out at uni, shopping, clubbing and I cant do any of that!

Are your doctors trying to find any medication for you? Im on tablets called Procoralan ivabradine to slow my heart and codeine for pain and domperidone for nausea.

Have they tried to give you anything to stop you being sick?


Tara

Hi Laureejo,

Welcome to the forum! I am glad that you have a diagnosis; That's the first step in getting better. I am still waiting for a definitive diagnosis but I believe it is POTS. Finding the right doctor can be challenging when you don't live near one of the main research facilities.

Best of luck!
Tish

Welcome

So sorry to hear that someone your age has this frustrating disorder. I feel for you, as many of my symptoms are the same. At one point 2-3 months ago I couldn't even keep water down. This went on for over amonth. I lost 13 pounds, which was good, but the low pottassium and dehydration was bad. The ER Dr. put me on prilosec for reflux for 2 weeks regimine, and it helped calmed things down. Now I can eat, but no meat. Hang in there, I found small bites, and grain worked best, like rice, oatmeal,farina. Just remember you are not aone in this....this is a great group to be with.
suzq