Last night was scary. It was hard to stay conscious. What was different was my head/neck movements. Ever since this whole thing started, I list to the left. When I slump in my living room chair or power chair, it’s always to the left. I have also lost the most muscle mass from my left thigh/butt. When I am about to have trouble with consciousness, it is always my right eye that flutters and the right eye where the pupil gets huge.
Yet…my usual MG stuff makes my left eye droop the most. To make my face and voice work, my left eye is the best one to cover. It’s definitely different problems…but when I am weak enough, they blend together. I don’t lose consciousness with MG…it’s more like being spaced out. I have come to appreciate the differences.
There are different ways I start to lose consciousness. At first, it was mostly when I stood up and/or raised my arms. Then it started happening from turning my head and now I really don’t have to do anything to bring it on. Back in July, I went to the ER when there was pain in my left arm/chest/jaw. Then in August, I was sent to the ER when I had similar pain, but was also having a hard time staying conscious. That’s when the nurse told me I had been unresponsive.
This whole weirdness has unfolded slowly but surely. I was probably an idiot to go right from the ER to the temple that day. Live and learn. The steroid high made me think I was strong. That was the beginning of the worst lapses in consciousness, the extreme listing to the left, drooling and head weakness. When my wheelchair hit the wall of the temple, it freaked me out for many reasons. I had briefly blacked out while driving the chair and my brain was soooooo not working correctly 😦
I have been to both the internist and NP, complaining about how hard it was to stay upright….even while sitting down and I told them the impossibility of staying fully cognizant. The internist went into his musing about what was the point of life if you just die. The NP was more practical. I told him how scary it was to feel the life and strength draining out of me and how difficult staying conscious was. After I saw the NP about this repeatedly, he made it clear I wasn’t going to last much longer and there wasn’t much that could be done for me medically.
The more effort I expend to seem positionally stable and aware of my surroundings, the harder and faster my heart has to beat to make it happen. It’s also harder and harder to casually breathe. It takes extra effort. When I am not trying hard to be here, I start slipping away. It feels like if I don’t fight the falling, I will slip into the abyss. Well…last night was a new chapter.
I had been noticing that more and more, I had to tip my head back and swivel it around to keep my head working. Now I have periods when my mind is going and my head cannot be controlled. My head drops down, sort of rolls around and often gets stuck down and to the left. I had to physically hold onto my head to get it to stop moving….and then that gives me a wicked bad headache. When my head falls and rolls hard, I see sparks, stars and bursts of light. Not liking this new weirdness!
After all that rolling and bobbing last night, the back of my head and top of my neck were massively swollen. I don’t think I have ever had so much head edema before 😮 When I woke up this morning, much of the swelling had gone down, but now both the head rolling and edema are coming back. I figured I had better write about it before my brain quits working.
When I feel like my consciousness is trying to slip away, I have been going out around the block or further afield. It seems like if I can distract my brain, that I can avoid some of the slippage. I’m not so sure it’s going to work today. I think I will go out for a spin in a bit. Our high will be 70’s again today and tomorrow 🙂 The more leaves I can see before passing out…the better!