Stardust Posted March 15 Report Share Posted March 15 (edited) Hey everyone, I just joined but have been reading a lot of posts. I'm not looking for a diagnosis from anyone here, but it would feel validating just to talk to people who might understand. I have an appointment in two weeks to talk to my primary about dysautonomia in general but I'm nervous about it and was hoping also for some advice on how to present my "case." For pretty much as long as I can remember, I've never felt well. It's like my thing: I always feel bad in some way. Over the past decade or so I've been bumped from specialist to specialist (gastroenterology, ENT, neurology, cardiology, etc) who in the end can't really find anything specifically wrong with that system. Naturally I've gotten the "it may be in your head" and "you just seem very sensitive" plenty of times. I'm afraid that by doing this the big picture is being missed. I started to suspect POTS around 2018 because of symptoms like: Dizziness Weakness Confusion Nausea Trembling Hot and sweaty feeling (often while clammy/cold skin) Fast heartrate I saw a cardiologist about it who was mostly dismissive but gave me a holter monitor. That showed tachycardia, but obviously didn't show what a TTT would. He put orthostatic hypotension on my chart but never did any other testing, and thenhe left the practice and I was left in limbo. Between then and now I've also been diagnosed with narcolepsy, Chiari malformation, migraines and PVCs. Other symptoms: Temperature disregulation Extremely intolerant to heat (it makes me feel awful, and similar to the symptoms above) Flushing - my face, neck and chest often get huge, bright red splotches that radiate heat. This can happen when I'm stressed (physically or mentally) but it also happens randomly. More specific flushing - sometimes just one side of my face will be bright red and radiate heat. Sometimes it's just one ear, but bright red and super hot. Blood pooling (mostly noticed in hands because they're what's visible most of the time, but I feel like I've seen it in my legs especially). When I let my hands hang by my sides they feel tingly and swollen. Constant fatigue, even doing small things feels exhausting and leaves me winded. Pain at the base of my skull, neck, shoulders and upper back. Bloating, sometimes feeling full very quickly. Constipation, stomach upset. GERD, including stomach pain and burning. Frequent urination (Liquid seems to go right through me. I could pee 4 times an hour with barely any intake so far that day, but I do drink a ton of water in general). Petechiae - light scratching (even through clothes) causes this, most often on my arms, thighs, stomach and breasts. I've also woken up with an entire hand and forearm covered in it looking like a horrible rash, but under the skin. I often get dizzy/faint in the shower. Basically constant headaches, aside from migraines. Chronic nasal congestion (not like I need to blow my nose but like it's swollen shut) I'm worried that a huge list of symptoms is just going to overwhelm my doctor and she'll zone out. I was planning on trying to narrow it down to categories with bullet points underneath with symptoms I think are related. Does my huge mix of symptoms feel familiar to anyone else? Does anyone have any advice how to present this to my doctor in a way that makes me less likely to be dismissed? I don't really have the ability to be picky about providers because I'm on Medicaid so finding a doctor specifically versed in dysautonomia isn't really an option. Sorry for the wall of text. If you've read this far, thank you so so much for taking the time. Edited March 15 by Stardust Shortened post Quote Link to comment Share on other sites More sharing options...
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