Young Adult Dysautonomia

[Linj10]

All through highschool from the time I was 16 until I just turned 22 I woul randomly just get the feeling and could feel myself beginning to pass out. I only fully fell out twice. I got to the point I could pinpoint the signals and sit down.

We constantly thought it was low blood sugar. I had that checked and it was fine. Still no answers. My blood test did show a b12 deficiency and I started doing weekly injections. Those made the headaches and blurry vision ease up and definetly helped with the mood swings but the dizziness and faintness did not stop.

Over the last year I developed horrid chest pains. To the point i would be standing and talkin and take a breath and suddenly it felt like someone had reached in with bear hands and a knife just ripping me to pieces. It would take my breath away and cripple me over for about 30 seconds.

Randomly while at my yearly gyno checkup last fall I had a pain and asked her. She grabbed a stethoscope and listened and heard a skip am sent me straight for and echo that showed nothing. She did not feel right and referred me to a cardiologist.

Turns out this cardiologist works in a practice that specializes in mitral valve prolapse and dysautonomia and I have both full fledge. However, I did my get much info and I cannot find much on the Internet either. I have cut out caffeine completely. Going from probably 5 or 6 can drinks a day to none or caffeine free. I did it cold turkey and talk about rough. But it has helped.

Along with the passing out I was always anxious or nervous or constantly worrying. My heart would race to the extent I thought it might just jump out. I would have extreme mood swings, headaches that weren't migraines but enough to make me useless and I was always tired and lethargic.

Since being diagnosed I was put on the b12, klonopin, lexapro, Wellbutrin, and bystolic because my BP was always rediculously low. I felt fine for a few months but since thanksgiving I've gone back down hill.

My questions are:

1) what exactly does this "diagnosis" mean?

2) do adrenaline surges feel like mini panic attacks starting up but then disappear?

3) is it normal to feel so overwhelmed?

4) does going gluten free help? I am considering it.

[mully2014]

It is totally normal to feel this overwhelmed...it's a lot to take in and it changes your life. I've seen that it helps some people to go gluten free especially if they have GI issues. Adrenaline surges make me shake and feel really weak. I guess they could feel like mini panic attacks some of the time. WIsh you luck in figure all of this out!

[jangle]

I can only answer the first and third question as I do not know about adrenaline surges or gluten free.

I would say the diagnosis means that you have some type of dysfunction in your autonomic nerves which prevent adequate venous constriction or blood supply to your brain while you're standing up. This can result in the lightheadedness and headaches you were describing. The good news however, is that according to preliminary studies 80% of the people with your form of dysautonomia (people who began in the 15-17 year old range) typically recover by their mid 20s. So hopefully in the next few years you'll find your symptoms diminishing.

Yes it is common to feel overwhelmed but I guess it's good to take to heart the fact that people have lived with this condition for many decades and have been able to function. There are treatments that can ease the symptoms and help you live day to day, it's just a matter of finding what works for you. Also there is this website which can be very helpful as a support mechanism. Hopefully you start feeling better soon.