Since I have been diagnosed with CM, I have paid attention to things that I thought were "normal" or that everyone experienced. I had one happen tonight and asked a friend (non CM) if she ever has this happen... her "uh..no" response confirmed that some of this stuff is either chiari related or I am just some sort of a freak of nature..so, I want to ask some of you, do you ever experience:
1. Sitting and vegging, unconsciously staring at something and you begin to see a steady beat that goes along with what you are looking at and it also along with your heartbeat?
2. How about having random stuffy ears, like if you are on an airplane and want them to pop. Then if you sit real quietly you can hear a steady, muffled beat that goes along with your heartbeat? Sometimes I don't hear the woosh, woosh beat until I try to pop my ears because the pressure is making me batty (I am sure I am not supposed to do that but haven't had that suspicion confirmed yet).
3. Have you ever been really still when you feel head pressure and felt your heartbeat gently on your face?
gawd, I sound like a nut asking these questions, so if I get no responses, my nuttiness will be confirmed! As I type, I am surrounded with the muffled beat in my eardrums....
So...anyone?? any of these occurrences? How about other strange things that aren't on the top of chiari symptom lists, but just seem rather odd?
I have all of those symptoms happen pretty often. Sometimes it feels like my whole body is throbbing. It's worse when the weather is bad. You are not crazy.
I have been realizing, too, that a lot of the things I took for granted as being "normal" are anything but! I have always gotten headaches if I stretch too long, laugh too hard, or strain too much. I thought that was normal. When I finally found out I have a Chiari malformation, I asked Phil (my husband) about all these "normal" things... His eyes got big and he said, "If I would have known you were experiencing all that, I would have gotten you to the doctor years ago!"
When it's part of your daily reality, you think these things are normal for everyone else. That's why I started a list of ALL my symptoms, whether I think they're Chiari related or not. It kind of irritates the doctors but I am worried if I leave something out, that will be the KEY piece of evidence they need to diagnose me lol
I always worried about head pain when I strained. Even when I pee it causes shooting pains. I was pretty sure it was abnormal plus my family has a history of aneurysm so I lived in fear of dying in the bathroom. I feel a little better now that I have an explaination.
I hear whooshing in my ears a lot. My head gets tight and tingly. So many strange sensations. My legs always feel like they are every so slightly vibrating underneath the surface. This gets worse when I'm really tired.