a bit of a vent rant.... thanks for listening

[stellaluna]

I went back to the doctor today.... one listed here on and the best I have encountered so far and the least frustrating HOWEVER...  

Today he seemed to contradict some recommendations for medications/changes and predictions for the future and wide generalizations vs. the last visit 6 months ago.  (I won't go into all that...)

Despite taking little time with me,  he seems to sum up that my triggers for what he called today my neurogenic dysautonomic dysfunction/POTS... not sure exact or even if I have an exact diagnosis yet (only TTTs, EKGs, ECHos and verbal histories)  but he thinks my "cause" is-- stress.   I quickly tried to reexplain what I have come to understand as my triggers (heat, too many weeks with only a few hours sleep, not keeping up with water/salt) and what I believe what the initial major catalyst was 2 years ago but his body language and lack of eye contact showed me he was done with the conversation.  

I'm sure I appear to be doing much better today.   I woke with energy and able to function well.   In the office I was not upset nor visibly "stressed" as last time though I am under extreme stress right now--just lost immediate family member unexpectedly last week, another is terminal and two others very close  are in very upsetting and stressful situations, among the other general life challenges I'm sure we all go through--and I am also under duress at work.  If stress were the major cause of my POTS/dysauto. triggers., it would seem I should be in crisis /flare at the moment.  

Though florinef that this dr. prescribed seems to be having a positive effect, I mentioned that the other very hot humid day, my heart rate shot up to 220 just walking slowing down a hall-never had it been this high and I felt VERY sick, while other times it is going very low ( 49/50s resting or sitting) and though I don't quite have a normal, lately one normal is 85-120 sitting walking though that can vary of course.   The dr. had nothing to say about this except the heat will be very difficult for me and stay out of the heat and drink gatorade.  I have long told him that the nausea prevents me from keeping down many of the electrolyte products including gatorade, powerade & coconut water.   I occasionally do a few powders, drink lots of water, doing well with salt, and do what I can otherwise and generally eat healthy.  When discussing the need for potassium, the dr. said there is actually not much posstassium in bananas ( I had been eating 1 per day for this purpose) and gatorade is better for that.  

What?   I just looked it up and bananas have 420mg of Potassium while gatorade has 42mg of Potassium so I would need to drink 10 gatorades to get as much Potassium as one banana. Also, I eat other healthy things such as avocados often which have a good amount as well. I know for a fact that doctors get little nutrition training but this day was SOOO frustrating today especially when I think of this 10 minute consultation and med refill as a service that I pay so much for out of pocket as well as someone I look toward for problem-solving.    Thank you for listening. I long for a dr. that is willing to take more than 10 minutes with me and look at the whole picture.    Or maybe I  should just "long" for or wish for resolution and cure...

 

 

[Goodr189]

Finding the right doctor is rough sometimes but pays off sooooo much in the end. Are you able to look around for someone that understands POTS better or at least is willing to learn and listen? 

We all have been there in some way whether it being frustrated with meds, symptoms, doctors, friends, family, etc. so you're not alone. Hope all goes well for you in the next coming days.

[corina]

I'm sorry you had a bad experience Stellaluna, I wish this hadn't happened. Reading through though  made me think your doctor might have had a bad day him/herself (re the potassium thing ie, I'm sure s/he knows better!). After all, our doctors are human too. I hope next time you'll see him/her will be better! It doesn't help you but knowing it wasn't you might! 

[stellaluna]

Thank you both...

This is a EP cardiologist found listed on Dinet.org.   I initially had such high hopes and again MUCH better than last few (one had misdiagnosed heart failure!! not!) cardiologists AT LEAST he does have experience and some knowledge of POTS/dysautonomia.   Yes, I forget doctors can have bad days too.   I am a teacher of young children so I feel I have to try so hard to be patient, "on", attentive to 20-some individual-needs, and aware of all things at all times every day when I am working; It's hard for me to be forgiving with a doctor who just needs to focus on just me for a few minutes.  I'm sure I don't know all of a doctor's stress and pressures.  I have to work on forgiveness and empathy in that regard.  ( I guess I'm acting like the kids I teach, a bit ego-centric right now)

However,  I may start the search again for another doctor.... We'll see.  He didn't want to see me back for another 8 months.  So unless I have a need/crisis-- I have time to think about it or switch if I can find someone else.  

I never even got to one of the questions I wanted to ask the dr.--I am often pre syncope though Florinef seems to be helping with that. I have never passed out.  I want to have a plan in mind if I ever do faint.  Do I need to go to urgent care/ER/dr?    If I feel well and my BP and heart rate normalize,  would it be important to go anyway since this would be first incident of passing out and also is it important as documentation in case some years in the future I need to apply for disability if my situation changes drastically?  (I am still able to work now).  Obviously, I am not asking for medical or legal advice from anyone here.  I'm asking hypothetically and asking about personal experiences if you are willing to share. 

My subconscious motto is often "Plan for the worst and hope for the best".  I really have become more optimistic as time goes on in life but I do like to have a plan in my head and then I feel like I can handle anything that comes my way if that makes sense.  I feel like a dr. would always say--go get checked out--due to liability and worse case scenarios.  I'm just wondering what others have done with their first syncope episode or what you think for documentation purposes...

Thanks again for listening to my appointment rant yesterday. It feels better just typing it out.      It is so comforting to know I have this outlet with listening ears that can understand and empathize.  

[SarahA33]

Hi there,

Sorry you had a frustrating experience. A lot of us here can sympathize with you and know what you are going through, I've been discouraged after appointments also.  Patience can be hard in our situation, as we aren't feeling well and have already been to previous doctors that haven't had the answers. By the time I found my POTS specialist, I had been passed around to many doctors and was so sick, I wanted answers very quickly and placed a lot of expectations on him. It took a good 4 visits before I started to make real progress. A diagnosis is really important, but I think the follow up care is equally important, too. So, in my opinion, 8 months sounds like a long time -- especially when you are feeling symptomatic and still have medication concerns. I think it's important to remember that all doctors are different, there are some that are very supportive and will ask if you have any concerns or questions. Then, there are those who can be short and to the point, where you have to be the one who does most of the communicating. In any case, if you feel disrespected and rushed, a second opinion/finding another doctor might be something to consider. Also, DINET does not endorse the physicians on the physician list. Perhaps you can do a search above to see if there are past threads about doctors in your area/state, or start a new topic to see if anyone can recommend someone.

In my personal experience, anything that is new and concerning warrants a visit to the ER/Urgent care. If you pass out and are on Florinef, it can affect certain electrolytes, so you may want to have those checked out even if your vitals return to normal.

Wishing you the best! Sarah

[stellaluna]

Sarah,  

Thank you for taking the time & care to respond.  

Yes, I guess I knew what my possible syncope plan should be.  Silly of me not to plan on going to hospital if I pass out.  In my heart, I feel it will just be a simple blood pressure/heart rate thing but not worth the risk to go unchecked  and I WILL go get checked out if and when it happens.   Just so tired of medical bills and the SAME tests redone with same results but such is the story for many here.   Money should not be a consideration when it comes to medical care...I will do what needs to be done. 

At the beginning of some of this when I was much more pre-syncopal  (if that's a word?!)  my potassium was very low.   So I've been diligent with bananas and other nutrition supplements; one reason why yesterday's EP's lack of knowledge on that was esp. upsetting/annoying as I've been careful with that.   Yes,  good reminder Florinef can "mess" with electrolytes and something to watch for.  Thank you.

I knew the doctor list here on dinet.org wasn't a recommendation or screened list per say but thought at least it was a good sign that this cardiologist (EP) had experience / knowledge treating POTS/Dys. patients.  And I have to say, in comparison to many other doctors that I have left in tears or have been hugely or nearly comically misdiagnosed, this doctor was an enormous improvement.   He just might not be the best or right one for me.   

side note:   For a totally separate issue-my gastroenterologist (not POTS stuff) that I really like, that I have been "worried" for years would be gone or retire (He just looks very old, not sure how old but very good bedside manner and I trust he knows his stuff);  Well, I just got the call that my next appt would have to be adjusted because he is retiring...AARGH!  I've long felt I could use a life assistant just to make apts, make calls, maybe interview doctors!  Just a dream...

I tend to be more than a little cautious when it comes to the internet, social media and sharing personal information.  I don't do Facebook and for twitter and others always use fake names, rarely to never share my location.  I have shared here that I am a teacher and as of late I am increasingly concerned that my health situation or the perception of my abilities may affect my employment. Working with some school boards is contentious.  Some school systems would ask you to go to their doctor to clear you to ensure that you are fit to perform the job.   I'm probably being overly cautious.  There are many other pieces to this I could go into but this would be much longer--I tend to be wordy!  My point is that I'm not sure I'm comfortable sharing my area in order to find a doctor --even though I have not used my real name.  I will have to think about this.   I have thought about making a trip to a large center/hospital that specializes and many people have good experiences there though this would not be a location I could go to more than twice a year.   It also may be complicated with insurance.  

Again, thank you for your posts and for listening.  The process of me typing as well as  hearing other thoughts is very helpful in me organizing my thoughts and putting things into perspective.