Is any cardiologist better than nothing?

[Pistol]

5 hours ago, POTSie78 said:

I see others who found the right treatment and can cope with this.

Dear @POTSie78 - well, the coping part takes a while. I too had to fight and advocate for myself when I first became ill with HPOTS. I literally went online and typed in " tachycardia and hypertension" and went from there. A week later I knew I had HPOTS, which neither me nor any other docs I knew had ever heard of. My wonderful PCP knew my symptoms were real and referred me to several cardiologists and to an autonomic neurologist at a big autonomic research facility - all treated me with various degrees of ignorance. Back then I did not really cope - I fought for survival and recognition of my disabling symptoms, and I fought to remain functioning. After 2 years ( and one year waiting period ) I finally got in to my current autonomic specialist and he diagnosed me on the spot, confirmed with norepinephrine tests. What a relief that was!

But even after diagnosis I was not coping - I still had these disabling symptoms and lost my job ( and any chance of ever being able to work again as long as I was sick ). It took years of trying different meds and treatments and eventually getting approved for SSDI, as well as a serious bout with depression before I truly learned to "cope" - it took full acceptance of the reality that I was never going to be able to go back to my former active life. Initially that felt like I was giving up, but it paved the way for me to learn to live with - and despite - my limitations from POTS. 

So - no, I don;t think most of us necessarily "cope", even if we might seem strong. And for most of us it takes exactly what you are going through right now: searching, hoping, getting disappointed and starting all over again. Not too long ago the time from onset of symptoms to diagnosis was 6 years for the average POTS patient. That has greatly improved - but not finding treatment. There are now many docs out there who can DIAGNOSE POTS - but very few that can successfully treat it. This is mostly due to the incorrect assumption by doctors that there is only one kind of POTS ( which there is NOT!!!! ). So if beta blocker, salt and fluid loading and compression does not work their arsenal is exhausted - go somewhere else. And unfortunately they often simply hand you off to someone else, equally unprepared to take on the treatment of POTS. 

So - at least be assured that you are not alone, that you are doing the right thing by continuing to find help, and that there is a lot of hope. Mayo has helped many other POTS sufferers - hopefully they will be able to help you too. Best of luck, and hugs!!!!!!

[POTSie78]

Hi @Pistol.  Thank you for your encouragement.   🙂 When I mentioned coping maybe that wasn't the right word.  What I meant is that people like yourself have perservered through the ups and downs trying to get answers and a treatment plan that helps.  Right now all I do is take is propranolol, medicine for migraines, increased my fluid and salt and wear compression socks.  My symptoms are still uncontrolled but I know there are other things to try with some positive outcomes.  I look at you for example being able to control your autonomic seizures and getting iv fluids to help combat symptoms.  That is very encouraging to me that more can be done for me once we know more about my specific dysautonomia.   Right now My doctors won't give me iv fluids unless I go to the emergency room first and  I don't want to do that every few days...ugh.  when I set up my appointment with Mayo I had expectations for treatment since I was already diagnosed but now I have to go through all their testing. I am hopeful that their testing will be more precise and will give me more detailed information so my doctors can do their best at treating this.

 

[Sushi]

@Sarah TeeI see that you are in Australia which brings to mind Greg Page (Wiggles guy with dysautonomia). I don’t know how hard he is to contact but I’d be pretty sure he would have checked out all the dysautonomia-literate doctors in Australia and could perhaps suggest someone. He used to be on a patient forum but that forum is no more.