Stardust

Hi @EveB! Thank you so much for taking the time to write such a thoughtful response. Sorry that I didn't reply sooner; the past couple of days have been particularly miserable. I definitely have more symptoms! lol I left a lot out to try to keep the post shorter. I've definitely been having those "Aha!" moments and I'm really hoping to try to steer my doctor toward them too. My I really like my primary in the few times I've seen her, I just hope that when I come in with something this "big" that she doesn't dismiss it all. I've definitely gotten referrals from her before for other stuff so I'm hopeful but very nervous. I'm sorry that you also had to have such a runaround with them but I'm glad you finally got some answers! It was well earned. It's funny because with their limited time I always felt like I'd be more helpful by just presenting a list of "here's what I experience and why I think it leads to this," but I'm going to try really hard not to do that. lol I did mention in my request for an appointment what I wanted to discuss (and used diagnosis names), but hopefully that will just get the ball rolling in her head while she's hearing all the symptoms. I'm going to have to learn to be pushier like you did. I don't look forward to it. 😩 Then again, maybe I'll get lucky and she'll just refer me out! I was planning to bring her the contact info of one of the more local dysautonomia specialists and ask that if she doesn't want to refer me to anyone else or look further could she please just refer me to them instead.

@Pistol I'll have to see if I can find an affordable one, but I'll look into it. Thank you for the idea!

Thank you for this! I don't actually have anyone more knowledgeable than I am to help, but my partner was trying. It was difficult because it was almost as wide as my arm is long and it kept sliding down even when it was tight enough on top. Turns out that the product listing was wrong about its size and it was too small anyway. I was trying to stay as still as possible, though. Thank you for the input about the pulse oximeter too! I'll have to see what I can find.

@Sarah Tee Sorry to bother you again! I did manage to get a BP cuff and try it. Unfortunately it had constant errors and we thought it might just be defective but in looking in reviews of others on Amazon it seems that all of them are wildly inaccurate. I'm also plus sized with upper arms larger at the top than bottom (and right between cuff sizes). I planned to get a larger one next, but I can't afford one of the more expensive ones so I wasn't sure what might be the best option. Would one of the fingertip pulse oximeters even be worth trying or should I keep trying to get a BP cuff that works for me? I was hoping to have some readings to give my doctor before my visit in a week and a half but at this rate I'm not sure I'll have any. 😕

Thank you so much! I actually have been watching a lot of those and they've been great.

That makes sense... Still so dumb though. I'll never understand why an insurance company gets to have any say over a doctor's recommendation (at least here in the US). 🙄

It's almost like we just have to keep poking them to Please Do The Thing.

It sure seems like persistence and nudging with the "threat" of going above them really helped! The whole thing is so frustrating. I don't understand why it's so hard to just get tests because like you said, you can't know what you'll find until you try it.

@MikeO Seems like most of us go through so much with them, doesn't it? 😔 So weird that she didn't want you to provide any more data; like does she not want to know new things and help more people? It sounds very frustrating, I'm sorry you had to go through that. But I'm very glad you've got something at least and are on the right track! I'll probably bring up the OGTT you mentioned too. Can't hurt to test more things, that sounds better than not testing anything! Thank you again for your input!

@MikeO This is really specific advice and that's incredibly helpful for me, so thank you so much for taking the time to write that out! I did mention suspicions in my appointment request but in my experience the doctor doesn't even look at that anyway. I'll try to avoid specific names and just mention symptoms (without being too namey about it lol). I have a BP/HR cuff coming today that I can use so I'll definitely do that. I'm a little worried that I may not quite meet the criteria for POTS because in my own test with my watch (which is less, accurate, I know) while my HR did go up by well over 30 bpm (and over 120) it seemed to last about a minute and go down. I know an increase is normal but 30-50 seems like a bigger jump than it should be, regardless of if it stays that way the whole time. But who knows, maybe it'll change with the cuff. I'm already on atenolol (for migraines) which obviously lowers my heart rate, I drink water nonstop and my diet is (IMO) quite salty. I'm far worse in the mornings, and I did this at 5pm so maybe I'm just too well compensated to see a more striking result. lol (In case it comes off that way, I just wanted to say that I don't want to be sick. I believe I am sick and dysautonomia in general (and much of POTS) explains just about everything I experience when nothing else has. With POTS not being taken very seriously as it is I'm worried that other dysautonomic disorders are less likely to be considered. So I'm not hooked on one diagnosis, I just want to know what's wrong with me! Might end up having to fight my way to a specialist if I can find a way to afford it.)

Thank you, I might have to try that!!

@MaineDoug Thank you!! 💙 Hoping I'll be blessed with the latter lol

@MaineDoug That must have made things so much easier after that point, lol "Look what I can do!" I'm a little worried about symptoms not showing up while being tested to be honest - they're better or worse depending on the day. Sometimes they're awful and sometimes I'm okayish. Wish they could just follow me around. lol But I'm taking the advice of another user to get a blood pressure/HR cuff and keep a log! Thank you so much! Again, I really appreciate the validation from you guys.

Thank you so much!! 🥰 That means a lot. lol that's a great idea! Easier to say "What symptom don't I have?" 😂

Craving salt and crossing legs all the time are related too? Another thing to add to the "apparently I've always had been this way" list. I do have a ton of symptoms but I was going to try to make it slightly less overwhelming by putting them in a bullet-pointed list by category. lol Thank you so much for the advice and encouragement. It really helps to hear from others that it's not all in my head, 💜

It's so weird though! People always ask what's wrong lol

@Pistol Thank you! I've checked it out a few times. There are 1 or 2 relatively nearby (I'm in California but California is huge) but I doubt they would take Medicaid and I can't afford to pay out of pocket. If I end up getting nowhere with my primary though I might have to see if I can make it work. Actually it looks like with at least one of them it's possible to get referred, but I would still need to be approved for it by Medicaid and that will probably be a big fight.

@Sarah Tee I'll see if I can manage to get a cuff and I'll try to keep a log too. Documentation is always helpful! In the meantime I'll try it with my watch too. Thank you for the validation that my symptoms seem consistent and are worth looking into more! I'm always worried about being dismissed or not believed. I haven't searched for a location-specific group but I did check out the specialist lists. Unfortunately it seems like most of them are pretty far away and I have a feeling none of them would probably take Medicaid anyway, but if I run into a wall I might have to find a way to get one of them regardless.

@Sarah Tee No, no doctor I've spoken with has tried it. I don't have a blood pressure cuff but I'm considering getting one to try the tests. I'll definitely do it with someone around to help! I do have a watch that measures heartrate at least, is it worth trying with that? I don't think I experience the same dizzy/faint feeling when standing in a queue or sitting still at a desk unless I'm very hot (which to be fair happens easily). I feel like over time while standing I start to feel generally unwell/exhausted and like I just need to sit down, but it's not that same acute dizziness. The tachycardia that I feel seems to be in correlation to the position change. It can happen when standing from sitting but getting out of bed in the morning/overnight seems to be worse. I have the same reaction after bending over too (like leaning down to pet my cat). ETA: That video looks perfect, thank you! I'll definitely check that out.

I have this on my right cheek! I often wake up that way too. It's so weird. I haven't been diagnosed yet but POTS and MCAS are both things I was already planning to bring up to my doctor.

I haven't been diagnosed yet but I'm noticing this right now too. I see things mentioned that I experience that I always thought were just weird things I have for no reason are common in/related to dysautonomia. It's helping me compile a list of symptoms that I have but might not have thought would be related.

Hi MaineDoug, Thank you so much for your response. I'm sorry that you can relate to so many of those symptoms but I'm grateful to know I'm not alone or crazy. Assertiveness is something I definitely struggle with but I would really like to try. I'm tired of the runaround with all the different doctors and really want to say "Can you please just give me a TTT/test for this specifically or send me to someone who will?" I'm so glad you hear that you're finally getting the care you deserve. I'm sure it was a long time coming. Sending you all the best!

Hi Mike! Thanks for your input. I thought so too, but when I've taken my blood sugar while experiencing symptoms it's been normal. ETA: I have never been able to test when the symptoms were at their absolute worst because I'm too shaky and foggy to physically manage it, but I've been trying to accomplish that.

Thank you so much for your advice, I appreciate it! My only concern with narrowing down the list too far is that it's what resulted in my being sent to specialists who couldn't see the bigger picture. I definitely know that they're not fans of independent research, lol. I fully understand that I don't have a medical degree... But at the same time, I have been right in the past. I was so sure that I had narcolepsy and every doctor said it was sleep apnea, but when I got tested I had no apnea and a clear narcolepsy diagnosis. That was the only other time I've felt like something fit my daily experience so well. (Not that this will mean much to them, just to share.)

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.