hawaiigirl789

Hey everyone, I was going to search through the member list to look for all the people from Oregon, but it is a long list....so I thought this might be faster!!!

Name-Ashli Jones Age-17 Diagnosis-POTS, NCS Age of Diagnosis-about 14 Where you live-Eugene, OR Symptoms at best-fatigue, headaches, brain fog/forgetfulness Symptoms at worst-extreme fatigue, headaches, brain fog/forgetfulness, tachycardia, stomach pains etc. Medications that didn't work-ProVigil, ProAmatine, Adderall XL Medications that do work-Adderal XR, Sectral, Levsin, Florinef, Lexapro, Ortho-Tri-Cyclen

Hey everyone I hope everything has been going well!!! One more month until school starts ..but hey it's my senior year!!! Anyways I need some help with this huge paper!!! First it would be great if anyone can send me a story about how they came to get diagnosed with dysautonomia etc... as much detail as possible would be wonderful! I also am having a difficult time coming up with my thesis. I want to focus on teens and how they cope but I just cant seem to put what I am thinking into words. Any help at all would be very much appreciated!!! If you are on or close to the west coast please contact me!!! Thanks for all the help! Ashli By the way please email me at ashlij51788@aol.com that is the screen name I use for school oriented stuff

HELP!!! I have had POTS/NCS for 4 years now, and unfortunately each year it has gotten worse. The first 2 years was spent on doctors that would say it was "all in my head". Now, although I do have a diagnosis, I cannot find a doctor that knows about dysautonomia and will treat me! Dr. Grubb has even sent my physician a plan to follow concerning medications if I feel worse, but she won't follow it because she doesn't feel comfortable. I am going to see a doctor in Redmond on thursday that treats someone with dysautonomia, but if anyone knows of other doctors I would love to know! Also I know Ehler's Danlos is connected with POTS patients, and if anyone with EDS has any ideas to help with pain that would be great! Ashli, OR

Hi, my name is Ashli and I have had POTS/NCS for 4 years now. One of my worst symptoms used to be excruciating stomach aches. I don't know about your daughter's stomach aches, but mine always happened after I ate. Even anything like plain bread or crackers would give me stomach aches. However, now I no longer experience ANY!! It is amazing. There are the occasional few, but ever since my doctor (Dr.Grubb, Ohio) prescribed levsin the pains have almost completely gone away. I take the medicine before every meal. I know it works because if I happen to forget to take it I pay for it. Concerning the sleep problems I also understand. One thing that might help is taking a warm shower or bath (which ever is best for your daughter) right before she goes to bed. The warm water makes me sleepy since it relaxes everything, and in turn it helps me sleep. I hope this will hope, and I hope i am posting this correctly! I am new so I am not quite sure how to work all of this! Good luck! Ashli, OR