Dysautonomia

Since I last wrote, I've had an Echo, MRI and EEG

I saw the neurologist today to get the results from the MRI and EEG.

My brain looks fine. No tumors, bleeding, structural anomalies, etc. The EEG is abnormal. Apparently my brain shuts down (brainwaves stop) and then starts back up again. He said this happened several times during the EEG. So, I'll be wearing an ambulatory EEG for three days the first week of December. He doesn't need me to TRY to faint (thankfully), since he already sees abnormal activity. He just wants me to push a button and write down what's going on when I feel weird (or faint) to see if the body weirdness corresponds with the brainwave weirdness.

He said that this finding could be the difference between one type of dysautonomia and another. It could also mean that I have a form of epilepsy due to- or in addition to dysautonomia. It seems very confusing to me. I’ll have to bring BJ with me when I see him in December for the results of the ambulatory EEG.

I tried to find something about this on the Internet, but all I found was a guy that was able to stop his brain waves when he reached a very Zen place. Maybe I was feeling super Zen that day.

I see the cardiologist in November to get the results of the Echo. The only thing the technician said was that my heart rate was averaging 95 and asked me if that was normal. My normal resting heart rate is in the low 60's- so I can only assume that my heart was giving away the secret that I noticed I had a very cute and young technician and I was worried that he might see my boobies. Actually, I'm pretty sure it was because I had to lay on the arm that is still recovering from shingles. I'd be willing to bet that pain raises the heart rate.

Frankly, I'm ready to quit thinking about ALL OF this. True, I don't want to bonk my head anymore but I wish the process to get to the treatment phase was quicker and involved less doctor appointments. It will be nice to get to the bottom of all of my health issues, but I am one of those people who likes to put negative stuff away in a little box and not think about it. It's not like I'm declining in health or anything (well, except for the shingles- but I'm going to attribute that to Disneyland.) In fact, my fankle is great now, so I'm feeling more healthy with all the walking.

This is really harshing my buzz.

I just looked at the calendar of medical stuff I'm doing this month. Wow...

I met with the new neurologist yesterday. He agrees with the cardiologist about the dysautonomia diagnosis. He said that now he needs to get to the bottom of which form of dysautonomia I have because certain forms of dysautonomia don't respond to cardiology treatments (such as pacemakers.)

He got me on a bad day. We'd just returned from a four day trip to Disneyland and I was beyond exhausted. I was having trouble talking and he said, "Let's try something". He had me lay down on the table and wait a few minutes and then asked me questions again. It was much better, and I was able to answer his questions. That was weird, but he said that it was what he expected to happen. I guess I should hook up some sort of laptop so I can work laying down. Yeah! (I'm kidding, of course, but I thought that was really interesting!)

He is sending me for a two hour EEG next Monday, a brain MRI the following Friday afternoon and then depending on the EEG results he'll be having me wear a portable EEG device and will ask me to do what it takes to make myself faint. Not sure I know how to MAKE myself faint, but I do know what to do to lower my chances of fainting so I guess I'll stop. He said he wants to see what my brain activity looks like before I faint. He also is going to send me to a DNA lab after all the test results are back.

In addition to the neurological tests, I have a heart echo on the last Monday of this month. KaCHING!

I need to schedule a follow-up with the cardiologist, and will have the follow-up with the cardiologist the last week of October so I think I should have some solid answers the first part of November.

I'm not sure if there's a whole lot that can be "fixed" from what I've read, but who knows. At least I'll finally have a diagnosis, and maybe I'll give myself permission to take it a little easier on myself.

Nah- who am I kidding. I don't know the concept of taking it easy on myself.

I think that so many doctors got it wrong because I was seeing specialists for each separate issue. They only looked at the issue through their specialist glasses.

The lesson I've learned (and the one you should listen to) is that it's important to tell the doctor EVERYTHING that is wrong, even if it's not in their speciality. There are several things I've been diagnosed with via lab work that I don't mention typically because I'm embarrassed to have so many things wrong with me and thought that the specialist wouldn't take me seriously if they saw the list. I FEEL like a hypochondriac even though everything has been proven via blood work or MRIs, etc.

The last cardiologist was talking to me about something and I said, maybe I should have told you that I have "x" (an adrenal syndrome.) It's so rare that the endocrinologist tested me for it twice because he couldn't believe it. The cardiologist became angry with me that I hadn't disclosed it and accused me of not knowing what I was talking about.

So, before I saw the new cardiologist I sat down and typed out a list of EVERY.SINGLE.THING that I've been diagnosed with, and I think it was easy for him because the puzzle was right there in black and white. 

So, the lesson for me (and anyone reading this) was to not decide for the doctor what he needs to know based on his specialty. I'm still not sure that anyone except a cardiologist or neurologist would have put the pieces together, but I'm glad that now I know.

I'm wondering if growing extra stuff is part of this too. I'll have to ask. It would make sense since the bottom line is that my body doesn't regulate itself. Maybe it doesn't know when to stop generating bone and things like that too. I'm going to make a fine study some day,

I'm not sure how much better things will be even though I'll have treatment. The cardiologist was rather grim. The important thing is that they can do something about the fainting, and that's what matters to me most. It doesn't matter to me that I can't be "cured". I never thought I'd be told why I faint, so this is better than I had a week ago.

So it's OK that this is grim, because at least I know what it is. To quote Lady Gaga, I was born this way, so have learned to work around it for 50 years. But now when I'm tired, I will stop feeling guilty about it. And that is a good thing.