TripleBlessed

Hi everyone! Im a new member and I am desperate for help. On August 31, 2017 I had a near syncapy episode at school picking up my children. Once I finally made it to my car my lips and face went numb, my jugular veins were distended my hands and feet went ice cold, I had to urinate constantly, I had diarrhea and was very tired. I went to urgent care the following morning and they put me on stroke protocol. I didnt end up having a stroke after all. After that my symptoms kept developing with chest pains and pain down my left arm. My fave would and neck would feel like it was on fire and would burn constanly. I develeoped a severe pressure and pain in the base of my skull and would scream in pain. I have been to the ER many many time where I was told that i was just having panic attacks. My heart rate continued to increase, and on ER visits my bp would be very elevated. My bp normally is on the lower side of normal. I was hospitalized for 2 abnormal EKGs for possible heart attack as well. During a hospital visit I had an episode of this feeling like i was literally drowning on my own saliva. I couldnt stop swallowing. It was terrifying. They hospital staff being in a small town had no idea what was wrong with me and thought I was a mental case. I didn't end up having a heart attack as they had thought though. I have episode that happens as soon as i drift off to sleep I wake up gasping fpr air and them my body begins to have tremors and my head shakes to the right side. I have both interal and external tremers. I have more iternal tremors than external. I get muscle twitches or my muscles will get hard knots in them that last for up to an hour or so and then go away. This happens all over and its very frustraging. My tongue is also extremely painful and stays swollen very this. At some times it prevents me from talking due to the swelling and pain. It has been this way for 6 months now. My hair is falling out, I have this unquenchable thirst all the time. My skin is very dry as well. I have found that if I eat any amount of sugar or carbs, I get extreme shortness of breath and my tachycardia is also worse. January of 2018 I was diagnosed with POTS but all they told me was to eat less carbs, have a little caffiene in the mornings (even after I told them that since August 31st I can even drink small amounts of caffiene bc I have a terrible reaction which all started AFTER the first episode I had) I was also told to drink water before I get out of bed and try compression socks. My dr wanted to put me on a beta blocker but it would also lower my bp. My bp now drops drastically on its own for no reason and even more after eating. I was concerned abt this so I am not taking any medications to help me. Thats it though. I have no other diagnosis even though I have multiple symptoms going on. Ikeep a puffy neck around my thyroid area as well as a red butterfly in that area all the time. My thyroid levels are always normal. My hands stay like ice pops. I can't tolerate cold weather and when i am hot I dont sweat very much. Eventhough they did the sweat test at Mayo and said it was normal. It all just leaves me confused with more quetions. If I get chill bumps sometimes its only.on one side of my body. I have had countless blood work at Mayo Clinic in Jacksonville but no one can figure out why my tongue is swelling on in so much pain. They don't even act concerned about my issues. My labs showed that my testosterone levels and prolactin levels are both elevated though. They aren't doing anything for that though yet which all seems a bit odd to me. I'm desperate for help. I have been driving 8+ hours to Mayo bc I live in Tennessee. I'm a mother of 3 and 2 of my children have Autism. I need assistance with my health so i can get back to being a Mommy again to my precious children. Does anyone have any thoughts as to what might be going on or do you have similar symptoms? Any DR recommendations for me? Thank you all for you time and assistance. It's nice to find others battling these health issues like me.