ChiariMSwithPOTS

Thanks for all the great links! KLS Boston, MA Celiac sufferer

That sounds exactly like Celiac Disease. Where you can't tolerate wheat, barley, etc. I'd get it checked out if you haven't already. It can cause many of our symptoms. KLS Boston, MA

I had my follow up appointment, and my cortisol was low as well. I'm going to an endocrinologist to see if he can shed more information. Just wanted to add my two cents. KLS Boston, MA

Rachel and Emily: Thank you for the replies. I have some cervical stenosis as well. Yeah the symptoms are smiliar. Steph: I hear yeh. Lots of rare disorders here too. Julia: Nnnn??? I saw a post earlier, but now it's deleted, about someone who saw, Dr. Bolognese. That's who did my surgery. KLS (who needs to work on making her signature. hehe) Boston, MA

Come on, I know you're out there. Don't be shy, Chiarians.

Hi POTS People, I'm looking for some friends on the board who have Chiari. Would love to compare stories, compare, etc. Reply or send me a private message. Thanks. KLS Boston, MA

Hi Nina, Thank you so much for responding. I think mine were before the Propulsid too but obviously, not helped by. Glad I'm not alone. Yeah, I have reflux and motility dysfunction. Thanks for the link and again for responding. KLS Boston, MA

Hey POTS'ers, I had a few questions, especially since I'm going to a POTS specialist soon. And also some comments. Just a brief intro to you all. I am a 29 year old female with Chiari Malformation, Multiple Sclerosis, Asthma and Ehler's Danlos. Do others have Ehler's Danlos? I keep seeing EDS, but I don't know if it means something else too. I have POTS most likely due to the Chiair Malformation. I was also on Propulsid for 2 years, when it got taken off the market causing heart problems. That's when I first noticed the tachycardia. But I could have had it before and just didn't notice much. I also have High BP from time to time, again because of the Chiari Malformation and the intercranial pressure (which raises BP). Also, having asthma, I'm always on albuterol, which produces tachycardia. My tachycardia is worse when I'm at a lower position, like laying down/reclining. I've been having chest pains for like 2 days now. I don't know if it's because of a pulled muscle or not. I have big breasts, 38-40 D/DD. I'm small framed so the big breasts on me causes back pains, pulled muscles, tenderness. So it's so hard for me to distinguish. Does anyone else have this problem? Also, because of the asthma and because of extreme heat, I deal with a lot of edema. And I also wonder if that's what's causing the discomfort around my chest area. Any ideas on this as well? Thanks for reading all this. Will post again if I remember annything else. KLS Boston, MA

Hi POTS people, I'm new to the forum. I was wondering if annyone finds that their POTS is worse laying down. I'd be interested to find out. Because I seem to be the opposite of everyone else. KLS Boston, MA