I have never been diagnosed for OI, but a doctor at Emory in Atlanta told me he thought my problems are from a disfunction of my autonomic nervous system. After looking this up on the internet, I agree. I have Orthostatic Intolerance.
Mine began 17 years ago after the birth of my son. I never had any problems until a few weeks after he was born. I had an epidural. I think this is what started it.
The summer months are worst for me. I live in GA, therefore it is hot. I may have a couple episodes a day. I love cold weather, I may go the entire winter without an episode. Also, when out in the heat, I become very weak. I started exercising about 4 years ago. Walking a min. of 4 miles a day on treadmill at a fast pace has really improved the fatigue I feel.
My episode will happen mostly when I get out of the car after driving. I will take a few steps and then I feel the sensations begin. It is so hard to describe. It begins at my feet and will travel up my body until my sight goes black. There will be a rushing sound in my ears. My legs will be very hard to pick up. Heavy. They will also tingle and feel very hot. Then it will move back down my body, like it exits my feet and I'll be fine.
My episodes are always the same. It will happen after I have been laying down in a lounge chair by the pool. Everytime I stand to walk to the pool, I'll have an episode.
No one has been able to diagnose me. Years I went from doctor to doctor. Each one telling me I was ok. My family doctor started giving me MRI's every 2 years, just to rule out MS. But, a couple months ago, the doc at Emory said this is an autonomic nervouse system problem. Told me that as long as I could live with it and it didn't get worse, then just deal with it. So, that's what I'm doing. dealing with it.
I do have major gastrointestinal problem. Take 2 nexium a day, along with an irrital bowel syndrom medicine.
The worst for me is the heat. I absolutely hate to be out in hot temps. My poor family has a hard time with this as we have a lake house and they want me to stay with them on the boat.
Good luck with your daughter, but she will probably have this for life.
