Unknowingly Having Dysautonomia For Five Years

so i have been sick for five years. im 17 now and have been sick since i was twelve. it started off as just being light headed and very tolerable but then when i got to my junior year in high school i could'nt do it and had to quit this cosmotology program i was doing and be home schooled from being so sick and having so many symptoms.

i went to so many doctors and tests imaginable and they could never find anything wrong, except for my low blood pressuare and then they started to find out more like my heart would race when i stood up and then the puzzle peices started coming together. it was a very long,slow, frustrating and troubling process. i didnt find out i had dysautonomia till winter of 2008 and i still have been getting worse and have not found the correct doctor.

my symptoms are low blood volume (32% defciant, anemia,light headedness, dizziness,presyncope, dots infront of my vision, heart palpitations, chest pain, fatigue,trouble breathing,cant walk that far,cant stand that long,nauseia, dream like state,sweating,sever anxiety, foggy mind) i could go on but those are just my main ones. i really hope that i could help someone whos going through this like i am cause it has caused me severe suffering and i was very alone and id never want anyone to go through it alone. hopefully i can get back out there soon and find a treatment plan and help other people who are suffering as well

brirehab brirehab
18-21, F
3 Responses Mar 5, 2010

I think I have dysautonomia as well... Still haven't been diagnosed, but I'm pretty darn sure this is my problem. I have the tachycardia upon standing, and standing for long periods of times makes me feel so dizzy and ill. It's gotten a lot better since I've changed my diet and such, but on the other hand it's almost gotten worse in other ways. I think when our bodies constantly go into fight or flight, they slowly start to break down. You mentioned sweating in your list of symptoms... That's one of my worst symptoms. I'm always soaked when it's the slightest bit warm in the room. I can't bring myself to date someone because when my body is going through these reactions I can't stand being touched! I've found evidence of people being cured through exercise, breathing techniques and NAET (alternative allergy treatment). Hoping that these will bring me some relief.

I have a daughter who is 13 y/o. She was admitted into the hospital in severe hyper sensitive pain back in sept 2011. Then began convulsing head to toe for 9 days. She was a star athelete and can now barely get out of bed. She was originally ddiagnosed with Addisons disease but has just recently been diagnosed woth Dysautonomia. We feel so alone and feel that hearing your story helps. We have an awesone dr here in Amarillo,TX who is actually an inventist...we r trying a experimental treatment involving effexor. We r praying for some relief. I will continue to pray for all that must go thru this horrible disorder....God bless all of you

Hi Brirehab--thanks for sharing. I have dysautonomia, and so does my 18 yr. old son. He had to quit high school too and homeschool instead. We know how hard it all is for you. As far as Dr.s not many know what to do--a neurologist is usually best. If you have really good insurance you could contact one of the Mayo clinics and see if they can help--they seem to be the most knowledgable about this. I went to UF/Shands in Gainesville, FL, but can't afford to keep going with my minimal insurance. My local Dr. is a neurologist and he helps a little with my symptoms. There's a study going on with an enzyme called secretin--especially for dysautonomics who have a lot of digestive problems--but I don't know if any Dr.s are treating with it yet. I'm going to ask my Dr. about it. Hang in there--I understand it sometimes gets better when your hormones level out after all of puberty is over--after 20 or so. I'm hoping my son's gets better then, too. Take care--Delina