Autonomic Dysfunction has taken my life over..I NEEDHELP!

[bilieann]

I was diagnosed with autonomic dysfunction about 7-8 months ago. I began experiencing life altering symptoms a year ago. I woke up one morning complaining It was extremely hard for me to get out of bed, I was light headed, felt sick to my stomach and at best description felt as if I had the flu, it kept up and two days later went to my family doctor who told nothing was wrong...the next day at dance team practice I passed out and my mom brought me to another local doctor who began running tests. I have never felt the same since first complaining about feeling ill, we thought this would go away and it was just a bizarre virus that had to run its course. For months I was a medical mystery, had several cat scans, MRI's, like (5-6) was tested for diseases and all kinds of things I have never heard of, hospitalized twice I finally was diagnosed with Neuro-Cardiogenic Syncope, and was told after being put on the betta blocker and several other meds, give myself about 6 weeks to get back to my normal self. After 7 weeks of me not getting any better, but developed more symptoms and was passing out up to 5 times a day, the doctor told me he couldn't help me any longer, needed another opinion. 10 different specialist later and many of the same diagnosis that included --- POTS, NCS, Orthostatic Hypotension, Chronic Fatigue Syndrome, Orthostatic Intolerance. We had hope this would all get better but it hasn't, it has gotten worse...and fast. I know have severe fibromyalgia, IBS, chronic migraines and are currently getting more test done now including Adeline testing. I cant drive, take online classes for college, cant work, and lay down in bed 95% of the time, if I try and go out to eat I feel miserable and sick, this sickness has changed my life, the way I view life, and has changed my personality - sometimes not for the better, my depression and anxiety is so crazy I feel at times I want to give up....and that's something I never want to happen. If anyone could give me any help, advice, doctors names, or anything that could help me have a better quality of life it would be greatly appreciated. And to all of you out there that feel like your so alone YOUR NOT! That emotion runs through my mind constantly so im so glad to have found this website!

[fbrodya]

Sorry, hit "send" too soon! Anyway, I was considering returning to Mayo for GI issues but won't now.

[fbrodya]

Billie..
I've been down the exact same road with my daughter, and I'm so sorry you're experiencing it too. The BEST docs I've heard about (though I haven't been able to get there) for POTS/Dysautonomia are Dr. Claire Francomano and Dr. Blair Grubb. Both are up in Ohio I believe. Dr. Francomano is heading a new Dysautonomia clinic. Google her and you'll find it.

I'm also very disappointed to hear about your Mayo/Jacksonville experience. We had the same issue at Mayo/Rochester. Daughter's docs put her in the adolescent pain rehab clinic (TWICE) because they said nothing could be done, learn to deal with it. They didn't evaluate her for EDS (which she has), and the weightlifting program they put her on was the WORST possible thing for her. They blamed her for failing the program. It is true that deep breathing does work for calming the autonomic nervous system, but the pain rehab program is definitely not "one size fits all," and

[beema36]

Hearing your experience am glad I didnt go to Mayo. That's horrible!!  Pots girl has good ideas I think and she's right somewhere there is help. You and I just haven't found it yet.
Beema

[POTSgirl85]

Billie, have you ever had a tilt table test?  If so, what were the results?  What did your heart rate and blood pressure do during that test?  I've had POTS for 8-10 years and have progressed into the hyperadrenergic subtype of POTS as well as several other diagnoses.  The place that finally has been taking the best care of me is Vanderbilt in Nashville, TN.  They have some phenomenal specialists there that I see for several different diagnoses.  Are you on any medications?  What is your heart rate when you are lying down and when you are upright?  What other symptoms do you have?  Please be encouraged, there is help.  Without medication, I would be bedridden and unable to participate in life at all.  With medication, I am able to enjoy life (not normally and fully like those without illness.  I cannot work, but I can find enjoyment in life.  I am even going to part-time graduate school.  It's hard, but I'm slowly and barely making it).  You will see brighter days!

[bilieann]

Thank you so much!! and Yes I actually went to the Mayo clinic in Jacksonville and I would not recommend it to anyone with this! The doctor listened to my heart talked to me for 15 minutes and told me "this Is my life now" I left crying and the long drive and money wasn't worth it at all. and I drink around the same and take 3 salt pills a day plus add salt to every meal and only drink water and PowerAde but I'm always dehydrated so I needed a port put in to get fluids a few times a week, bc my veins have all started failing on me and being so young that's not good....were looking into why im always dehydrated so more testing to come. thank you so much for commenting back!!!!!
-Billie

[beema36]

My heart goes out to you and I know exactly how you feel! Most days I just think giving up would be easier but know that's not a choice. I am hoping some others on here have ideas for you but here's mine. Have you looked into places that specialize in this such as Mayo or Cleveland Clinic? In my case I don't think I could travel to do it let alone afford it but it is a thought. I have just about all those same diagnosis plus several more. One thing I find that helps is get 150 oz fluid daily sometimes more and salt load.

I hope you can get some good answers. You are so young to go through this! Bless your heart hang in there!
Beema