Especially for Sailing Muffin and Marc

http://www.csfinfo.org/lectures

Watching the above physician lecture video (scroll down) on autonomic issues and sleep disorders, made me think of you both.

Yes, this doctor is speaking to Chairi and EDS patients, what he has to say would be interesting to anyone dealing with autonomic issues.

I'm sorry you have to wade through some preliminary talk before you get to the actual content on autonomic stuff!

But it is worth watching.

I really wish we lived closer to this internist.

Cheryl

Thanks Cheryl...I'll take a look. Hope you guys are doing the best you can.

-MGB

cheryl...

this was a bit hard to take a look at, but my cardiac situtation is starting to become more clear. the coronary disease is taking its toll, and it's having an effect on the the heart's electrical system. there's an autonomic dysfuction component with the vagus nerve, but it's clearly being treated by the pacemaker.

the most difficult issue at the moment is orthostatic hypostension. recently i've found i have 3 herniated discs in my neck to varying degrees. i'm going to see a neurosurgeon to get an eval...we'll see from there.

thanks for posting!

My heart goes out to you, Marc.

What I found interesting about this doctor is that he believes managing pain HELPS autonomic issues. And he is speaking to Chiarians who tend to have headache pain.

The headache neuro/docs often refuse to prescribe pain meds to HA patients for ANY reason.

I found this doctor on video to be so refreshing and "real."

Hi,

Thanks for posting. I have been out of town for a few days. I will definitely watch it though.

In my own experience, there is probably some link between pain control and the autonomic system- when I am in a lot of pain, I faint more than I do when I am not in as much pain. I sometimes wonder if the body jst gets overwhelmed and shuts down for a second due to pain? I will watch the lecture and give you my thoughts. I will probably also pass it on to mom or dad.

Marc, so sorry to hear about the fainting and the herniated disks- which disks are herniated?

Pain free days,
sconesail

Thanks guys,

Luckily my family doc is on top of the pain stuff--not a problem. The autonomic issue is now on back burner. There's a tie in with what's going on with the CNS, but the overall cholesterol problem is accelerating some problems. Damage to the small vessels throughout the body (thus the brain) is driving some things. Treating the cardiovascular and lipid problem helps to treat the rest.

Doc got me in to see an ortho surgeon that he has high confidence in Pittsburgh in about 2 weeks.

C2-3 has some facet erosion and osteo causing some issues

C3-4 has a central protrusion

C5-6 is "broad based" protrusion.

Hi,

Cheryl- thanks so much for posting the link to the lecture. It really is fascinating. I do not have Ehlers-Danlos, but I have pretty much every symptom listed for autonomic dysfunction- including sleep apnea. I may try to get in touch with the dr or find out if he treats autonomic problems in those that do not have Chiari or EDS. If nothing else he explains it so well.

I find the fact that pain control does help me. However, as you know, so many of the drs I have seen are against pain management for fear it will make fainting worse.

Marc- I hope you get the back and neck problems straightened out.

Pain free days,
sconesail

Hi All,

Thanks again for posting.

My mom watched it last night and agrees that it is the best description of what happens when I faint. I am going to call or write the dr who put the post together. We are already doing a good bit to control what we can, but to little avail and there may not be a straight or clear answer, but that will not stop me from searching.

I am having a rough morning after I had an IV Monday, felt a great deal better and did way too much yesterday.

Marc, i hope the back and neck stuff gets straightened out soon. I am so sorry you have to deal with that on top of everything else.

Pain free days,
sconesail