Handling Doctors Who Don't Believe...

[Becia]

How do you manage doctors at the you encounter who don't believe POTS and all it's idosyncracies exist? Like, ones you can't escape?

I ask, because I'm currently in the hospital, mainly because the situation with my hips has sent me into a harder crash than we could manage at home, so we are trying to get me into a rehab for a few weeks to get them back strong and get me back to my baseline. This week has been a blur to me, as according to my roommates it's been seizure after seizure and I've been passing out a lot. I just remember wanting to sleep, which happens when I have hard times like this, but the end result of it all had me not eating and drinking because I was just out more than awake.

My power of attorney and friend whom I trust, packed me up yesterday to the ER, and basically said we weren't leaving until something was done. They gave me a liter of fluids, and begrudgingly admitted me, even though I had a seizure in the parking lot, was in and out in the ER from pain and orthostatics, and then when they got me to the room, the admitting hospitalist came in, and went into the story we all end up hearing: that this was all in my mind, it doesn't exist, and I'm doing this for drama and attention,

According to Dave (my POA), I came out fighting and got extremely upset, and rightly so. This isn't made up. The seizures are like my bodies response to severe stress, and with the recent events and the fact I'm in pain overload, yeah, they are frequent. But this doctor, basically spent a good half hour telling me I'm crazy, I need to see a therapist ande medicated (I see a therapist, medications don't have the desired effect with me), and this is all made up. And he wasn't nice.

POTS is real. So are anoxia seizures, which my neuros have all said that is what happens when my heart beats so a fasts, the transfer of oxygen doesn't completely happen, so my brain freaks out, making my body freak out, and having the seizure is it's way if rebooting itself.

I can't escape this "bunch of words and names that are really bad" because until my friends and my general practitioner that is working with my insurance have a rehab place and plan ready to go for at least getting my hips stronger, he is the hospitalist over my case. He is the one who wrote my admitting diagnosis, which he was nice and included syncope, but also added failure to thrive and mental instability. I'm not cool with those. I'm not cool with him telling me how I feel is invalid, stupid, and a drama ploy, or telling the nurses, so I get the "you're too young for this nonsense" lecture from them when I ask for help getting up because the world is spinning nine ways to Tuesday.

How do you handle doctors who don't believe you? Can you let is slide off your back? Or do you try to bring up articles and information to educate? I know the earliest I can leave right now is Monday, when someone tells me what's going on with the rehab situation, but I have this sinking feeling this guy is gonna be a pain in my side until I do leave. To appease him, I've agreed to another mental evaluation, which me and my POA don't really see as a problem, but I'm just like... Pulling my hair out. He's about to have a ball of anxiety at him, because last night was no sleep due to seizure precautions, loud ward, and no amount of classical music could drown that out, on top of being afraid of forgetting everything, so I stayed up reading and noting.

They are offering me Xanax. I'm about to say yes to one, just to see if I can rest and relax a bit.

How do y'all handle these types of doctors?

[arizona girl]

Becia,

I am so sorry how difficult things have been for you. It is very concerning that you have a doctor that doesn't know your history trying to label you with a psychiatric diagnosis. We had this happen with another member, who the hospital tried to commit and said the same things to her that you are hearing. She ended up having Stiff person's syndrome and she was not one bit nuts. They had to move her to another hospital to get her away from those doctors. You may be able to ask that another hospitalist be assigned to you. These doctors are not necessarily the best. I had one touch the tape on my wounds after my surgery without washing her hands, after putting her cell phone down. Her doctor notes were wack when I read them. I had to call her on it. Then I heard the nurses talking about her in a negative way. They are often just new doctors in training.

If you can't be moved to a different hospital, than either you or your POA need to contact the hospital and ask for a patient advocate. Every hospital has them. File a complaint with the hospital and ask for a patient advocate to be assigned to you. Your insurance may have one, though they can be biased as they are trying to save the insurance money. There are private patient advocates that can be hired.

Also your pcp who knows your history needs to be bought in to advocate for you. What is happening here is wrong and a violation of your rights. I would not comply with a mental evaluation if I were you and I'd let your pcp know they are trying to force that on you. While the xanax may help you, they may try to use it as proof they are right, not understanding that these meds often help people with autonomic dysfunction. I take diazepam as a gi and muscle relaxer, but not to calm me down as I am pretty calm mostly.

Your rights as a patient are being violated, let them know you know that. This is the last thing you need to deal with right now. Let us know what happens.

[Clb75]

Educate! Stay calm and direct even though you feel like screaming on the inside. It's infuriating when you are invalidated for everything you go through and even more so when dealing with a close minded doctor who doesn't listen and won't admit what they don't know. Doctors respond to research articles though so the more you have it might help get your point across. Vanderbilt's autonomic dysfunction site has an overview of Pots and also something about is Pots psychological or not. They of course say no it is not. Maybe a printout of that site could help too.

A few months back I posted about having to go to the ER after a dose of Lexapro. When I went back to my cardio to tell him, I asked if Pots made you more sensitive to meds (which I've read about from a lot of people). He told me no, that I was probably getting depressed then offered me Paxil! Depression will not send you to the ER for excessive presyncope and hypertension! They try to turn it around on the patient when they don't have any more answers or symptoms fall outside of the box. If you talk to the psych consult perhaps you can explain and educate them as well. They can't diagnose a somatization disorder unless everything physical has been ruled out and you have documented physical causes for your symptoms. I'm sorry things are so tough right now but it sounds like you have great support.

[blueskies]

Hi Becia,

I'm sorry to hear you are experiencing this. I was misdiagnosed with panic disorder for nearly 2 decades. During this time a neurologist told me I had 'a garden variety of balance disorder' that would cause me to feel bad at times but not to let it stop me doing anything. During these decades I brought up three kids, held down jobs, and got a university degree but I felt ill most of the time. I was not getting over my anxiety despite applying the cognitive behavioral therapy I had been taught each and every day, except during those 'strange periods' when I would end up in bed for a day, or week, or month unable to walk unless to get to the toilet using furniture to lean on and trying to hold myself steady against walls making my way to the bathroom and back. While I can understand the misdiagnosis - no one had heard of POTS in australia 30 years ago it had the profound effect of causing me to doubt my sanity and I ended up having little belief in myself as a result.

I wasn't looking for a diagnosis - I thought I was crazy and this also explained away the migraines etc. But allergic responses continued to increase and then my bowels stopped working entirely. It was my allergist who suggested I see the doctor who diagnosed me with POTS.

I nearly didn't bother to go see the doctor who diagnosed POTS and ERYTHROMELAGIA. When he gave me the diagnoses and said I had postural Orthostatic Tachycardia Syndrome I started to cry. I told him that I had thought I was a hypochondriac - that everyone now thought I was. Except, weirdly, the psychiatrist I had been seeing for quite some time who had told me a number of times that he thought something else was going on besides anxiety.

POTS explained so much, was/is a legitimate diagnosis, yet I had come to question myself so much that while I knew I had it, I still didn't quite believe it. So profound was my lack of belief in myself after years of treating an anxiety disorder that was not ever going to be treated because it was not what I had. Although you can be sure these years have left me anxious ( but 'panic attacks' are part of POTS) with a real struggle to believe this is really happening to me. At one point I rang my psychiatrist (my old one had moved away) and asked him if he thought I might just have a somatoform disorder - this despite having so many years of the symptoms of POTS that specialists were treating me for. My psychiatrist responded that he wanted to think about it for a few days. 3 days later he called me back and said that no, I did not have a so mato form disorder but to believe my other medical specialists.

To this day I still sometimes wonder if this is all real despite having well respected specialists treating me. I have been so sick, am sick as I've ever been at this time, yet 2 decades of being told it was all in my head and I could make it better even though I did everything I was supposed to do to get better, i was the 'poster child for applying cognitive behavioral therapy' - cbt -all those years - with no results. Because I was doing things everyday that I should not have been doing, such as making myself stand in line even though I felt like i was going to fall, would feel very ill and bring on an extreme migraine or other pots symptoms. I gave nearly 20 years to cbt and ended up still anxious as well as terribly depressed that I could not get better despite religiously doing everything the cognitive behaviuoral therapy asked of me. To this day, i still will often find myself in situations where my body is demanding I lie down and my brain will be saying' you are fine, you don't need to lie down, what is the worst that can happen to you?' That is how effectively I was 'trained' despite also knowing my body will not allow me to push through anything - it will stop me immediately or I will manage to get home and crash there.

Don't let this happen to you. I have the quote from Shakespeare at the bottom of my post to remind me I have pots but also, should I come across a disbelieving doctor I can just think to myself about them " honestly? You know more than Shakespeare? I don't think ssoooooooo" it's still not water off a duck's back, but if a doc isn't interested I no longer try to enlighten them. Because they aren't good doctors anyways, and really, for the sake of sick people, should be doing something else, not doctoring. It is impossible for anyone to know everything, and indeed, the more expert someone becomes in their field, the more they realize that there is so much more to know than they will ever be able to learn. I don't think you can be a good health professional without realizing that very simple fact. It is impossible to know everything about anything and there is something wrong with people who don't think like that.

Xanax is a help for some peple with pots, i have read. I take it now, but am switching over to valium. It helps calm my autonomic system a little bit. However, I don't know that I would be taking a psychiatric med on the advice of a doctor who thinks what I have is psychiatric. I would be speaking to my pots doc about it if possible.

Blue