Please Help

[oliviachristine]

I am 17 years old and was diagnosed with autonomic dysfunction in feb. I got it under control for a month but now it's worse than ever. I have pain, fainting, nausea, and absolutely cannot sleep. I need help. I don't know how to get it under control and I'm really just starting to feel hopeless. Any suggestions?

[oliviachristine]

My mom has been talking to the docor who treated me at Mayo for advice, but it's like I'm stuck in a cycle where I can't feel any better because It's nearly impossible for me to do the things I need to do.

I'm allergic to soy and peanuts and a lot of the nutrition supplements have one or the other.

Thank you so much for your support, I really appreciate it.

[laurab2818]

I know how hard things can be and how hard it can be to keep your spirits up.  Hang in there and know there are lots of people here who can relate and can offer you support.  

Can you call your doctors at Mayo for advice?

When I was at Cleveland they set me up to see a GI person too, which was helpful.  I do frequent small meals/snacks now.  Can you do liquid meals or even Ensure to get in some nutrition during this rough period?

[oliviachristine]

Thank you so much I really appreciate it. I hope your son gets to feeling better soon, it's a really rough thing to handle.

[CHRISTYDRAKE]

On the Dinet.org website, it listed 2 doctors in Chicago.

[CHRISTYDRAKE]

My son takes Thermatabs (salt pills) to get enough salt each day.  His neurologist suggested it.  Some people say it is hard on their stomach, but it doesn't seem to bother him any.  

The doctors in Cleveland that diagnosed my son, also treat him.  We live in St Louis and no body seemed able to help him.  So, I do a lot of phone calling back and forth.  They call in new prescriptions,etc...  We are currently in Cleveland now having more tests run on his motility issues (slow stomach emptying).  They are working hard to get at the root of his nausea.

Maybe find a doctor more up on dysautonomia in your area.  I thought there were some doctors in Chicago who were versed in it.

[oliviachristine]

I'm focusing my days on drinking enough water and gatorade but I'm having trouble getting enough salt because I can't keep food down very well.

I was being treated for it in Rochester at the Mayo Clinic but when I returned back to Chicago I just continued to meet with my neurologist who doesn't seem to be too educated on dysautonomia. He put me on chroral hydrate for sleep but I discontinued it because it seems to have the opposite effect on me.

Thank you so much for responding I'm getting really desperate and hopeless,

[CHRISTYDRAKE]

Are you being treated by a doctor? taking meds?  My son has all the symptoms you listed and is still struggling to get it under control.  His doctors keep trying new meds to see what works best.  

He was sleeping okay with Doxepin, but now that doesn't seem to work anymore.  Make sure you drink a lot everyday, get salt, gatorade,  etc...