is there really someone who understands what this is or they just saying they do. because no one here in colorado knows anything about me how, or how to help all they do is had me pills and say takes theses the will make you feel better. I want to feel like a normal person again and not have someone ask me every 10 mins if im ok or jump up every time i stand up so i guess my question is can anyone really help me.
If you look at literature out there on the net, you'll find that dysautonomia is still pretty poorly understood. They are still trying to figure out about orthostatic intolerance issues such as P.O.T.S.. They try to put out fires with medications, hoping the medicine will alleviate your symptoms. They suggest things like eating more salt, wearing compression stockings, etc..
The best you can do (aside from leaning on the everlasting arms of the Great Physician if you belong to Him) is to go to those who are the best researched to get the latest thoughts on dysautonomia and treatment proposals (if you can manage to travel to them and get an appointment). People like Dr. Grubb and places like Vanderbilt, and I think Mayo are where a lot of people wind up going who are desperate for answers.
I believe they tell you what their prescription for you would be and you are supposed to take it back to your local doctor from there to follow up on their recommendations.
For some, I don't believe there is an easy answer, and we learn to live with the changes in life style that come with orthostatic intolerance and other dysautonomia symptoms.
It kind of helps to have a community like this one, where you can see you are not isolated and alone in this dysfunction.
I will guess that the people jumping now and asking you often if you are okay will soon grow more accustomed to the new you and while still caring, become a little less jumpy. At least, that's the way it seemed to happen recently with my sibling. (I was diagnosed way back in 2004 with I.S.T. and then P.O.T.S. and typically, no one's jumpy about me at this point- I don't take medicine for it right now. My sibling was diagnosed with P.O.T.S. and N.C.S.- though fainting was not complete on tilt table- last year and still we get quite concerned at times.... sibling taking midodrine.)
May I suggest-what a blessing for you to have people surrounding you who apparently care about how you are with this dysfunction? A support system is important, so while you are learning to adjust and trying to cope with this, it might help to remember those jumpy people around you need to learn to adjust and cope with your condition as well.
In addition to talking to us here (and PLEASE continue to do so, I see that you're not only asking questions but supporting others which is exactly what this community is all about!), have you checked out the DYNA website?
I think you're right at the age where you're straddling between youth and adulthood, and I can't imagine how difficult that makes it to find people to relate to how you're feeling about having a rare disease. I mean, having a rare disease is *really* rough. Many, many of us reach out to the internet every day to talk to others with similar experiences because the people around us in real life don't "get it" no matter how much they may try to sympathize. At the same time, you're at a stage of life where you're not a child anymore and you're ready to be free of parental support and control. For many people, regardless of age, getting dysautonomia means giving up control to some extent and relying on others for support ... in many cases adults go back to relying on their parents/family; the struggle of a person with dysautonomia who has their onset in their late teens is unique.
I can't say that I "get" how you feel completely. My onset was at age 27 and I'm 33 now. I can say that I'm here and I'm listening any time you want to vent. That's probably 50% of how I've coped with my dysautonomia is venting and talking to other people with dysautonomia who either just commiserate or give advice. The other 50% is pretty much what you describe: take pills. For me, it also involves a lot of going to the doctor and being poked and prodded for various tests.
Having a younger onset, unlike many of the "old farts" like me you'll meet online, you do have a higher likelihood of being in the best outcome group that recovers completely. There is hope that your life will be "normal" again. In the meantime, go ahead and keep me busy. :-)
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