Alicat_326

Wow, thank you all for your amazing responses, I am so glad to hear that some of you have figured out how to get this under control for yourselves and for those of you and your friends who are still on that journey, I wish the best to you and I hope you all find something that works soon. This was so helpful and although I am saddened by how many of us are in pain, it's nice to not be alone. Stay safe and well lovelies.

Hey guys, I have always has horribly painful periods, long lasting, heavy flow, a laundry list of symptoms. But since having dysautonomia (they havent diagnosed me with pots or a specific form of it yet), my periods have been absolutely unbearable. Migraines, debilitating pain, SUCH a heavy flow, exacerbated lightheartedness, fatigue, brain fog, a high temperature, dehydration, I cant eat, i cant sleep, it hurts to move and to lie still. Pain meds never help, blood pooling gets more noticable the week leading up to it and during the duration of this time. I know dysautonomia can affect the light headed, heart racing, blood volume parts of this. But could the immense amounts of pain I'm in have any correlation to dysautonomia? And my stomach revolting against anything and everything I put into it? Is this something any of you guys have gone through? I'm just trying to find ways to make this easier for myself, I already salt and water load and wear compression garments, I know some pain medications can make flow heavier but I cannot make it through without anything to help. Thank you guys

Thank you both for your responses so much. This was so helpful and reassuring

Hello, I recently went to urgent care for migraines and mentioned my heartrate had been doing crazy things. I've been active my whole life, dance, working out 5 days a week. I was sick with mono for about 3 months in early 2020 and my body never fully recovered. Almost Everytime I stand up my heart rate skyrockets, my vision goes black, I get shakey, I have brain fog all the time, I'm always exhausted. I get nauseous after eating, I cant stand longer than an hour without my legs getting a throbbing ache. They put a heart monitor on me at the urgent care and set me up with a primary care physician. The monitor came back and I had sinus tachycardia, they found I was vitamin D deficient through blood tests, but other than that I wasn't anemic, so they couldn't figure out what was wrong with me. My primary care physician referred me to a cardiologist who listened to my long list of symptoms that have been going on for close to a year now and she said I had dysautonomia. They tested me for POTS by having me lie down, taking my blood pressure, having me sit up but still remain seated, check my blood pressure, and then they had me stand after a few minutes and took a final blood pressure. The doctor told me I did not qualify for POTS because my blood pressure did not drop enough when i stood. But the way they had me seated was my legs right out in front of me and not on the floor like they would usually be. And usually I wouldnt have such long pauses between each phase when I'm just standing up to move throughout the day. Is this an accurate gauge for if I have POTS or not? Or should I get a second opinion? They didnt explain much to me at my visit (thankfully indo my research so I knew what they were talking about) and they said they'd see me in a year unless things got worse. Gave me a treatment plan of increase my sodium and water, wear compression garments, and slowly work on exercise. No specifics, no general amounts for sodium intake. This was all about a week ago so I'm still trying to figure everything out. But I'm wondering how that was an accurate test for pots and how they could rule out orthostatic hypotension in a setting like that when in everyday life my vision goes completely black and I almost faint multiple times a day. If anyone has any tips at all as far as day to day goes, or if I should get a second opinion, i would really appreciate it, if you've read this far, thank you. It means more than you know.