Penelopesmom7

@Heidi123 i am very double jointed in all fingers, but not my elbows, knees or any other part of my body. Would that still be considered hypermobile? @Pistol I think it must have to do with circulation. Sometimes, I’d feel my brain shake/crazy pressure. I hope it’s just circulation related vs brain swelling or atrophy. @StayAtHomeMom thank you, I know everyone’s case of dysautonomia is very inidividual and unique. I just wish I knew for certain what specific type of dysautonomia (or whatever else) is causing this already. The not knowing is the worst. I definitely intend to keep looking for answers. @KiminOrlando I tried asking a neurologist to do that, but he dismissed me and said that that was unnecessary. I’m gonna ask the next one I go to do that. Thanks everyone for all the input and support

@StayAtHomeMom thank you yes, I’ve seen multiple cardiologists and structurally, my heart is fine. I was looking up what autonomic conditions occur because of pregnancy and the only one I saw was POTS. But I’m not even sure that’s what I have (my heart rate isn’t always 30bpm faster standing than seating). I’m just nervous it could be something way worse. And thank you for the suggestions @Pistol and @KiminOrlando. I’ve been to a few neurologists already and so far, none have been of much help getting to the bottom of whatever this is. But I’m going to keep doctor hopping til I get some answers. Do any of you ever feel a pressure type feeling in your brain? Specifically, around the base of your head/right above your neck? I have so many bizarre symptoms that are so hard to explain that don’t seem to fit neatly in the POTS box. Thanks all,

Thank you Pistol..i’m actually signing up for a gym next week and am hoping to see continued improvement. But besides that, that shaking sensation is not just in my pelvic area, but almost everywhere (noticeable with movement), which is what makes me wonder what exactly to attribute it to versus just chalking it up to the birth process. Thank you for your insight! I just really, really hope whatever this is goes away as quickly as it seemed to come on.

Hi everyone, I’m hoping someone can help me out as to what in the world it is I might be dealing with here, so here goes: All h*** broke loose inside my body when my daughter was born. Six days after I gave birth to her, I was rushed via ambulance to the hospital and treated for postpartum preeclampsia. Then, I continued to feel horrible..I had tachycardia, my pulse pressure was super narrow (very high diastolic reading), lightheaded, dizzy, and pretty much always on the verge of passing out and/or dying (or so it felt). I noticed every time I stood up, my heart rate would sky rocket. So after like 9 trips to the ER and countless looks of disbelief from doctors, nurses and even family members, one doctor mentioned I could have POTS. And then (after researching it), it all made sense. I did take 2 tilt table tests a few months after, and they came back negative. But I took an ANSAR test, and the results showed I do have an autonomic dysfunction (something about sympathetic withdrawal). So I was put on metropolol, and it’s really seemed to help as far as my heart rate goes. I’m able to be upright now...there was a good two-three weeks where I was literally unable to sit up. It was awful. Awful is an understatement..especially having a new baby to care for. Downright traumatizing. Now my my heart rate is just all over the place. It’ll go from 50 something (even when standing) to 110 to 70. Just bounces all around. But now, thank God, I’m able to be a lot more functional (6 months after her birth). But I still have super weird symptoms and I have no idea if it’s related to this new illness. I notice when I move any body part, it’s not a smooth, seamless movement...it’s rickety and shaky. Not the movement itself, but my joint where the movement is coming from. I think it’s the joint. For instance, when I go to reach for a spoon, my shoulder area trembles. When I lift leg, my spine shakes. It also feels like my spine weighs 1,000 pounds and like gravity is pushing it down. When I lift my neck, it shakes. I know it sounds crazy and it probably doesn’t make any sense, but I’ve had no luck figuring out what this could be or how to describe it in a way that a doctor can understand/help me/ give me a diagnosis. I’m honestly terrified it’ll only get worse and it could be multiple system atrophy (I had weird tingling sensations and was unable to completely empty my bladder for a few days). The only thing that makes me think it’s not is the fact everything happened after my daughter was born and that I’m only 29. Does this sound like POTS? Or is it something else? Thank you!