Undiagnosed as of yet, just hoping for discussion/validation and advice on talking to my doctor.

[Stardust]

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, 2023 by Stardust
Shortened post

[MomtoGiuliana]

Unfortunately a long list of symptoms is typical for dysautonomia.  And the symptoms can change daily or weekly which can raise doctors' skepticism, in my experience.

Yes most if not all of the symptoms you note have been noted here on the forum by dysautonomia patients.

Suggestions I have from my past experience:

• Write out a list of your symptoms as a reference--it's easy to forget things when in front of a doctor
• Keeping a diary of symptoms in general may help
• Identify the 1-3 most concerning/consistent symptoms you want an answer on and treatment for and focus on those
• don't mention internet research--so many doctors react negatively to this, even tho there is a lot of good information on the internet and you may be right about what you have concluded from the research (you may also be wrong!).  Try to approach the dr with an open mind.
• bring an advocate with you who has observed these symptoms/observed you feeling unwell

This may contain some helpful information for you:

https://www.dinet.org/info/pots/patient-guide-preparing-for-the-er-new-medical-visits-r151/

 

[Stardust]

15 minutes ago, MomtoGiuliana said:

• Identify the 1-3 most concerning/consistent symptoms you want an answer on and treatment for and focus on those
• don't mention internet research--so many doctors react negatively to this, even tho there is a lot of good information on the internet and you may be right about what you have concluded from the research (you may also be wrong!).  Try to approach the dr with an open mind.

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.)

[MikeO]

24 minutes ago, Stardust said:

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.)

First part of your post is indicative of hypoglycemia (just my take). not sure what your food intake is like but i did fall thru the cracks for DM until i received a OGTT and started getting support. DM is easy to miss. Like Mom said take a few steps at a time that is what i had to do.

Best of luck.

[Stardust]

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.

Edited March 15, 2023 by Stardust
More info

[MaineDoug]

Hi Stardust,

I have almost all of the symptoms you mention. Good advice by the others.

I’ll just add, be prepared, be assertive. Insist on being taken seriously and treated with respect. Insist that at the least you get a plan to either investigate your symptoms or to refer you to someone who will. I wasted many years being passed back and forth, before changing docs, asking new ones if they will work with me, and insisting on care. 
 

I’m finally being heard, have been diagnosed with POTS, and am getting better treatment and finally feeling better. I wish you the best of Luck!

[Stardust]

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!

[Sarah Tee]

Has anyone checked your “orthostatic vitals”? This can be done at home if you have a blood pressure cuff gadget that also measures heart rate.

There are a couple of methods, all valid. Search for “NASA lean test” and “active stand test”.

Be careful when doing this at home because you may feel faint. It helps to have someone with you to take the readings.

You mention feeling dizzy/faint in the shower – how do you go with standing in a queue or sitting still at a desk?

Also, when you get tachycardia (fast heart rate), is that related to standing, or transitioning from lying to sitting to standing, e.g. getting out of bed in the morning?

[Sarah Tee]

This lecture might be helpful:

 

[Stardust]

@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.

[Sarah Tee]

@Stardust, it sounds like checking your blood pressure and heart rate would be worthwhile.

If you can manage it, try keeping a log of your symptoms, HR and BP, and activity. (Meals too, if you feel the timing or what you eat may be relevant.)

I’m not a doctor, of course, but everything you have described could be consistent with dysautonomia. It definitely needs to be investigated.

Is there a Facebook group for POTS or dysautonomia that covers your location, e.g. state, region, city? This is a good resource for finding an autonomic specialist in your area that you can access.

You can also check the specialist list here:

http://dysautonomiainternational.org/page.php?ID=14

[Stardust]

@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.

[Pistol]

@Stardust there is a physician list on the main page of this site, click on the physicians tab on the top bar. 

[Stardust]

5 hours ago, Pistol said:

@Stardust there is a physician list on the main page of this site, click on the physicians tab on the top bar. 

@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.

[Pistol]

@Stardust You can check with the medicaid provider in your state and ask them to either tell you what specialist they recommend or you can ask them to add a specialist to their list of providers if they dont have an autonomic specialist. I did that once when my daughter needed to see a pediatric dermatologist but my states medicaid did not have one. It was a fight but in the end she could go out of state. 

[MikeO]

Just had to queue in on this conversation. From my experience do take written notes with you to a visit. All too many times i would forget or be in the (brain fog mode) and just never brought up what was on my mind. Also do your best to come up with understandable terminology as to what you are feeling (i have struggled with this one). Folks on Dinet can help with this. Whooshing does not cut it for shure. Don't use some of the terms that do show up on the forums as well like (adrenaline rush) instead just say my heart feels like it is racing along with palpitations when i am up right (standing) and i feel lightheaded or dizzy. A good cardiologist will understand that because it medically makes sense.

MCAS is one other i would avoid. If you do have the normal medical symptoms of this you more than likely be ballooning up after eating a offending food. Instead go with food gives me problems (do your best to explain what ones if known and how) and question some type of intolerance your doc should understand that as well. 

Capturing good data does help so log what bothers you (what where and when). I did when i finally suspected that my bp was tanking after eating so bought a new bp cuff that was bluetooth enabled and download a app on my smart phone and got very aggressive for a month in capturing data (almost every hour during the day along with changes in activities and food intake) this was productive (for me anyways). Just don't get over focused on the numbers. Since i have stopped as i know what to expect.

Best,

Mike  

[Stardust]

7 hours ago, Pistol said:

@Stardust You can check with the medicaid provider in your state and ask them to either tell you what specialist they recommend or you can ask them to add a specialist to their list of providers if they dont have an autonomic specialist. I did that once when my daughter needed to see a pediatric dermatologist but my states medicaid did not have one. It was a fight but in the end she could go out of state. 

Thank you, I might have to try that!!

 

[Stardust]

@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.)

[MikeO]

1 hour ago, Stardust said:

@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.)

I have gone thru a whirlwind with my care providers. I have experienced many faces of presyncope along with syncope and POTS like symptoms. I would not even know to categorize it. Went thru med changes that helped. After pushing back on my faint clinic the Gal finally acknowledged that Diabetes (after providing a ton of data) can produce autonomic dysfunction along with orthostatic hypotension (sticky thick blood). Not sure i buy into this and she does not know? and just does not want to hear it again. She asked not to provide any more data and to work with my local team (guess i will see how that goes) I do know food does affect me and changes in diet does work.

Keep after it.

So far now i have something 

[Stardust]

@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]

21 minutes ago, Stardust said:

@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!

@StardustI am a big advocate for testing. IMO don't know until you test and i know that the faint clinic can do this just don't. If hindsight is 20/20 should have seen this already. I did get some traction when it came time to see my cardiologist but after went crickets. This go i did leave a long MyChart message trail with multiple folks on the CC that did not get closed out. I did state my local team (DM Trainer) was aware of how BG levels affect the blood but stopped at that so i did forward the info and simply stated i would have to ask the higher ups. And Yo got a definitive response.  I didn't mean to go to management with complaints but she did come forth with relevant info. Sure she asked the bigger players on that team.

Sure i will get help.

[Stardust]

10 minutes ago, MikeO said:

@StardustI am a big advocate for testing. IMO don't know until you test and i know that the faint clinic can do this just don't. If hindsight is 20/20 should have seen this already. I did get some traction when it came time to see my cardiologist but after went crickets. This go i did leave a long MyChart message trail with multiple folks on the CC that did not get closed out. I did state my local team (DM Trainer) was aware of how BG levels affect the blood but stopped at that so i did forward the info and simply stated i would have to ask the higher ups. And Yo got a definitive response.  I didn't mean to go to management with complaints but she did come forth with relevant info. Sure she asked the bigger players on that team.

Sure i will get help.

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]

1 hour ago, Stardust said:

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.

Getting testing goes beyond me I did ask the faint clinic for testing for my droopy eye yet they provide me with Mestition and was rejected. I am sure that my PCP will order tests (c-peptide) and the antigen antibody (GAD) tests.

[Stardust]

1 hour ago, MikeO said:

Getting testing goes beyond me I did ask the faint clinic for testing for my droopy eye yet they provide me with Mestition and was rejected. I am sure that my PCP will order tests (c-peptide) and the antigen antibody (GAD) tests.

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

[Pistol]

@MikeO @Stardust I know that most doctors are being pressured by insurance companies to only order tests for certain ICD10 codes. In the old days a doctor could just order any test they wanted for any reason, like "rule out something". Now there are set guidelines which only qualify a patient for testing if there are certain symptoms or abnormalities in exam or lab testing that have to be present in order to "earn" a test. MRI's are a perfect example - they are very expensive, so a doctor has to justify ordering one. Often there have to be other tests done first that were negative before a MRI can be done.