joshrandall Posted November 5, 2015 Report Share Posted November 5, 2015 I had an event monitor handed in 3 weeks ago, im supposed to see the doctor in clinic, cardiologist. Been told no urgency, dont think he has any clue about POTS. I showed clear signs of it in hospital. My family dont think there is anything wrong with me, all the while my quality of life *****. I mean it could be worse, but vertigo, heart racing, dizziness, bounding pulse after eating, all give me more anxiety, and I no longer feel like a normal person. If someone would just say oh there is something wrong with you, i know id feel better somewhat. this just *****, and i dont know what doctor to turn to, i dont think they honestly know anything about the condition in this area. Quote Link to comment Share on other sites More sharing options...
Alma Posted November 5, 2015 Report Share Posted November 5, 2015 I had a similar experience here. I just don't think many doctors know much about this. Indeed, the head cardiologist at the hospital I was in told me that he didn't know if there even are any specialists in this province! There is a list of specialists on the main page of this forum, maybe they'll have someone listed there in your area. I wish you all the best, it certainly is frustrating. Quote Link to comment Share on other sites More sharing options...
bigtrouble Posted November 5, 2015 Report Share Posted November 5, 2015 Even if you don't find a specialist on POTS, you have to keep in mind that the important part is to suppress the symptoms so that you can function. Perhaps get beta-blockers, Ca channel blocker, increase salt and water intake, etc. Quote Link to comment Share on other sites More sharing options...
statesof Posted November 5, 2015 Report Share Posted November 5, 2015 Have you taken a look at the physician's list? http://dinet.org/index.php/physician-list , you may find a doctor in your area. It is important to seek out an autonomic specialist, or cardiologist who understands POTS so that you can at least get a tilt table test done to see if you have the typical hr increase upon standing. Quote Link to comment Share on other sites More sharing options...
joshrandall Posted November 10, 2015 Author Report Share Posted November 10, 2015 the problem i face is, i sufferd with mental health issues and have used drug in the past, when i went to a and e i just wanted them to take me seriously so i told them id used cocaine, i spoke to a dysautonomia doctor, that someone mentioned on here who is kind of close to me, but my doctor read the hospital report which said my hr was down to sinus tachycardia caused from drugs and binge drinking when on 2 seperate occasions they acknowledged my hr was high for no apparent reason none of this was put in the hospital report, just standing on the treadmill the nurses saw my hr was 110, before i was even walking, it had jumped from 90 to 110 and they went to ask a doctor wether they should go through the test, again none of this in the report and i suggested them twice to that it could be neurological, and they dismissed it, told them of my dizziness and then my hr was up to 200 bpm just on a 12 minute walkin test yet they said i passed the test. I went to my gp who literally said, that even if i had a syndrome the best thing for it is was work - how am i supposed to work, he wouldnt refer me, based on the hospital report and he said if someone suggests it ill take them to court.... Quote Link to comment Share on other sites More sharing options...
fitnesskelly Posted November 10, 2015 Report Share Posted November 10, 2015 Get copies of your records - tests, lab work, everything - and get a new doc. Maybe be cautious what you tell the new doc - don't lie about your history, but stick to the point of why you are there to see them...current symptoms, etc. There are good doctors out there, but there are also doctors influenced by their biases and it's hard to get them to see around those biases. At 20, I had severe pancreatitis and the gastro immediately wrote me off as a college kid who drank too much, meanwhile I didn't drink. I also agree with docs not knowing much about dysautonomia. I had my first cardiology appt. last week and it was rather disappointing, but doc did admit that most don't know much about dysautonomia yet and I appreciated that he said he doesn't really know much about it (I'm in Ohio and doc suggested Dr Grubb or the Cleveland Clinic for a better diagnosis).Hang in there. It's tough. I was so bad off in February of this year that I thought I might be dying. It's taken this long of seeing docs and specialists to narrow things down to some form of dysautonomia. Quote Link to comment Share on other sites More sharing options...
joshrandall Posted November 11, 2015 Author Report Share Posted November 11, 2015 i have been to 2 doctors already ive just made a complaint against these doctors. Quote Link to comment Share on other sites More sharing options...
statesof Posted November 11, 2015 Report Share Posted November 11, 2015 It is difficult to find doctors who completely understand this illness, and sometimes even more difficult just to be able to get appointments to the doctors who do. From my personal experience hospitals and emergencies rooms are not in any way helpful to our condition, and many doctors try to send us the psychologist/ psychiatrist route because many of our symptoms bring on or mimic anxiety and psych disorders which are typically more common among the general population. Just keep trying to find a doctor who is willing to listen and refer you to someone who can run a tilt table test, at least that test seems to give many of us solid proof that its not all just "in our heads". Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.