After more than 10 years of bouncing around from doctor to doctor, being completely ignored or accused of using heroin or some other illegal substance, you start to become disenchanted with mainstream doctors. I've been to various different types of doctors and none of them have any solutions to my issues. When one of the "trusted" drugs or supplements fail to give you the expected improvement, then they literally throw their hands up in the air and give up.
Are the doctors I see just bad doctors? I wish I knew the answer to that, but regardless POTS
patients are suffering. We suffer on a daily basis and cannot resume normal activities even while on 10 medications and following their salt and water intake suggestions as well as wearing uncomfortable compression hose and raising the head of our bed. Just typing all of that out makes me even more angry. Something is wrong here. These doctors should realize what they are doing is not working. Whatever theory you have used to trial these meds in POTS patients has not panned out and it's time to get back to the drawing board. PERIOD!POTS doctors are only treating symptoms and in my case have no desire to figure out the underlying causes. In most cases, they are incapable of even controlling symptoms, so they are failing at all aspects of their job. There are always breakthrough symptoms in every single person I have spoken to over the years with POTS. You might see a slight improvement with standing HR numbers, but you still classify with POTS and still cannot lead a normal life. What else truly matters in life?
Once you start mixing medications, it becomes damn near impossible to know what side effects are from what drug. How do you know what is a "POTS" symptom and not a side effect from the new beta blocker you started taking or the new SSRI you have been put on?
It gets to a point where enough is enough and that is why I am bitter. I am sick of POTS doctors treating POTSy like guinea pigs. I did not sign up for this! There has to be others out there that feel the same way as me. Surely not all of you are brainwashed that we need all of these medications especially when they are NOT working?
There ARE others who feel the same way that you do. I feel like a guinea pig almost every time I go to the doctor. I generally end up telling them what to do, which Rx I need/want and which tests they need to run. It's absurd and I too would like to see the medical community try to get to the root cause instead of simply treating symptoms.
ReplyDeleteI know this is an old post and you may have found a Dr who works out great. I'm not sure where you are from, but a friend of mine has POTS and she went through dr after dr after dr not know what was wrong with her. Finally they sent her to Ohio and the found out POTS. She now sees a Dr in Floridia who has a POTS clinic and actually has POTS himself. She loves him. I believe his names is Dr. Charles Randy Thompson!
ReplyDeleteHow have you been feeling lately Dana? I am on a one to two year wait list to see a specialist who diagnoses POTS. I'm 99.999% sure I have it. Mine waxes and wanes. Can't work at all when it's really bad. Have you found anything else that helps you alot? Hope you're doing better!
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