How to handle consult tomorrow?

[Milliesgirl]

..Seeing cardio physicians assistant tomorrow. I have been taking my BP w heart rate regularly since my tilt test (borderline pots) several weeks ago. I learned about poor mans tilt here and was curious.  I will take my readings along to show him. Wondering at what point  to bring up those findings; after he tells me what THEY think or are going to do?  What if I disagree because of my findings (I want to determine if I think they are really knowledgeable about dysautonomia or not?) Trying to tell docs about stuff is usually NOT appreciated my experience here.When I try, I often  get shut down. Cardiologist wouldn't even listen to me when I told him I had Eds on first consult and wondered if it was relevant.  He dismissively and almost angrily said "we don't deal with that here!" We outsource to Mayo for that" He didn't even chart it!  But, I have not met this PA but can you see why I'm anxious to talk now?

This is what's happening.

I think I need some volume tests and the epinephrine test at least (if I understand protocols). Think I have PAF or NOH with supine hypertension. BP Readings are always high laying down with hrate 50-60. Last night while watching tv in bed BP jumped to 182/91. HR of 60. I was very thirsty, so I was probably just dehydrated. Got up and jumped around to get blood moving and got more to drink. BP came down immediately to 139/84 w/hr of 80. Took a bit of Xanax. Slept good! Better today. Sound familiar to anyone?

[DizzyGirls]

Consults are stressful, aren't they!?  We have one on Thursday with a rheumatologist that I don't particularly care for, but rheumys are not a dime a dozen, so I'm going to take a different approach this time.  As far as presenting your bp readings (which is a very good thing to do), I would give him/her a chance to get through the formalities and then present them to the PA.  I have found that sometimes PAs listen better than the actual MDs.  EDS would most certainly be important in your condition as the primary reason that you have Dysautonomia.  My daughters have EDS III.  I know our cardiologist gave us an answer like "everybody's being diagnosed with EDS these days".  Well, yes, because they've just now figured out how to diagnose it.  I actually have a Fibromyalgia doctor that we were seeing for a while write to me occasionally regarding symptoms in my daughters to see if they were matching what she was seeing in her practice.  It was a desire to not let anyone slide through the cracks.  Great doctor!  If this doctor won't listen to you and dismisses things that we all know are important, might be time to find a new doctor.  That being said, sometimes that is not an option (insurance, location, etc.).  I have made the mistake of using words that are actually diagnoses and not symptoms.  When describing my daughter's dizziness, I use the word "vertigo".  I know it's vertigo, but that is a diagnosis, not a symptom.  So, I'm trying to tell my girls when we see all of our doctors, to try and go about the approach of describing their symptoms instead of using the term for the diagnosis.  It's hard to do, but it might work.  Also, try to bring a print out of a list of your current medications and your dose (it will speed things up), a list of your recent symptoms that brought you there, and maybe a list of things that have already been diagnosed.  We are going to the rheumy to see about possible Lupus for my oldest, but I do intend on telling (nicely presenting) her about my daughter's EDS and Dysautonomia (POTS, Vasovagal issues).  Our parts are all connected to one body and doctors who "part us out" do us all a great disservice, as we all know Dysautonomia and EDS can affect almost any part of the body. 

Hope your appointment goes well!

[Milliesgirl]

Thanks Dizzygirls. Kinda what I thought too. Shut up for a bit and then use info for questions maybe? Sounds like you have your hands full! Good luck at your appointment to! Bless that Fibro doc of yours for her caring!

[Milliesgirl]

Well, My appointment went pretty well. The PA was very nice.  We did do a sitting and standing BP  and it was relevant. Dropped 23 points in 30 seconds. She took me off the amlodipine (Norvasc) and started me on Metoprolol (long acting) beta blocker. My BP is too high all the time except during a crash when it goes to something in the healthy range lol. But still big (40+) swings which isn't good. After all the research I've done I still didn't understand what bb's do. She explained that it helped block the erratic signal between my brain and heart. (found out later she was talking about epinephrine) which is why she didn't need to do those tests, I guess. I asked about blood volume tests and she said She didn't need it at this time. Just drink fluids and in Any Form except alcohol or much caffiene. Not just water. Water dries my mouth out. Sounds stupid but it washes all my saliva out and I feel like cotton mouth. 

She's worked with POTS for 30 yrs!  I was stunned, as we so often read here that so many docs don't know what it is! I mentioned my EDS as a possible explanation but still got that brush off. Said to go back to the rhumatologist for that. That's a bit frustrating. Not that I expect her to do something except chart it Maybe? Be a little interested? Typical specialists . I think she was surprised that the heart clinic I went to 5 years ago did everything EXCEPT a tilt table test though.  She didn't think I had to worry much about compression hose unless I wanted to just get a cheap pair for those hot days.  I don't pool badly. Yay! She's hoping we can stabilize my BP to 130-140 but she knew it might be tricky.   

I took her the database of my vitals which she thought was amazing, but then cautioned me about overwhelming myself with too much reading and charting because of all the confusion about the many concomitant conditions.  (I felt a little foolish) but her colleague told me to go Google it . (She was like,  " he said What? That doesn't sound like him. He must Be had a bad day.") So yes, I probably went overboard, but mostly I'm just fascinated by it all and I think my research helped!  She understood though because after 39 years (post delivery of my daughter), I finally know what this is and tips to help myself. But, I think I will now redirect my energy to more fun things for awhile and hope this settles down. Hoping you all find good help too! Wish me luck and chime in if anything sounds familiar. I'll check in on ya!

[DizzyGirls]

So glad your appointment was considerably better than the last!  Yea!!  I hope you start feeling consistently better with the new meds.