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Has Anyone Else Been Told It's Not Pots, It's Psychological?


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Hi. I'm new here. I was told two years ago that I had POTS after a battery of tests and here in NYC, went to one of the main dysautonomia doctors who told me no, I suffer from under exercise and 'nerves'. He dismissed the Mayo reports. It is very aggravating to be dismissed and not find help where I live. And, of course, I cannot travel back and forth to Mayo. My hr goes up whenever I stand by 30-40 beats, and know that is part of the diagnosis for POTS. Has anyone else been dismissed by a specialist? Glad to find this site.

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I think a lot of us have. I was told many years ago I had chronic fatigue syndrome and in the same breath the doctor told me " and cfs is just what people have when they need to get in shape". This was after I told him I was already diagnosed with autonaumic dysfunction as a child. Even last year when I was in the hospital very sick the doctor looked at me like I was crazy when I said I thnk its my autonaumic dysfunction progressing. He said he never heard of such a thing and it was probaly just indigestion and being dehydrated. ( which I was niether) I went through 6 more doctors,specialists included and countless trips to the er before i found one that knew what I was talking about and treated it very seriously so keep trying and be your own advocate and dont give up till someone hears you and takes u seriously. Theres a link under common questions I htink with doctors and resources i believe, worth a try.

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Yes, for whatever reason - be it that POTS isn't seen as serious compared to other disorders, which honestly it isn't. (If you compare POTS to other disorders doctors regularly see, such as Parkinson's, Alzheimers, heart failure, cancer, etc. etc.) or that doctors just don't understand POTS and vent their frustration as our own psychological problems - it doesn't matter. We deserve the respect and dignity that we're under hardship and need help, and really you shouldn't go to doctors who treat you otherwise.

Unfortunately I'm in the zone of doctors who acknowledge POTS as a physical illness but have no time or interest in pursuing treating it.

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Doctors often label conditions as having a purely psychological basis when they don't understand them or don't know how to treat. It's not that long ago that MS patients and those suffering from Parkinson's had the same level of disbelief thrown at them.

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Yes, and as stated above, I think many of us have. I remember crying 1 1/2 hours home from a follow up visit of a supposed "Pots specialist" and that said that very thing. I had been diagnosed by an electrophysiologist locally when I was in the ER three years ago, but told that he did not treat POTS. Told me to increase my salt and water and go live a normal life. I then sought out a second opinion. That's when this second Dr. told me that there was nothing he could do to help me and that I should find someone closer to home and think about seeing a therapist. Said that I had anxiety disorder. I mean, come on, anyone with half a brain and a computer know that your fight or flight response is controlled by your ANS. If it is not working properly then, it is not out of the question that this disorder can present with and elevated anxiety level. My original dx Dr. actually went on the DINET site and printed information for me to take home. He told me that not many Dr.s are aware of this disorder and that even fewer treat it. My life has been three years of **** most days. It has changed my entire life, I am sadly no longer the person I used to be which was a person that rode a bicycle 9 miles a day 5-6 days a week, a person that was active in my children's lives (as I homeschool) going on field trip after field trip, having people over, going on playdates. Now I'm reduced to being a hermit most days, only getting out on Friday's to take my kids to a homeschool co-op (and that's only if I double up on my anxiety meds). My oldest is driving now, so she now has the burden of driving me around, but that is only on days that I don't feel crappy enough to stay in bed...I digress, in answer to your question, yes, I think many of us have been told "it's all in our heads". I think Dr.s can be so insensitive at times when they don't understand what it is that they are dealing with. Most Dr.s (in my experience) have this little box, called their medical textbooks, and if you don't fit into it/them then your ailment is considered "all in your head". It is a real shame, I think, as well as a disservice to patients out there with this and other similar disorders. I agree with K&ajsmom, keep trying and continue to be your own advocate.

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A couple of doctors told us my son had anxiety, didn't want to attend school or was depressed. I didn't buy into it, he was a mellow kid with lots and lots of friends. One doctor spoke to him for 10 minutes and diagnosed him with depression since he was no longer playing soccer or baseball. I tried to explain that he could no longer play due to the illness but the doctor wouldn't listen.

It was wonderful when we saw Dr Gisela Chelimsky(in Cleveland at the time) and the first words out of her mouth were " this is not in your head" and gave him a hug. She has been my favorite doctor of all, out of all the doctors who we have seen. She said she has to tell all her patients that because most of them have been diagnosed with mental disorders before getting a correct diagnosis.

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Hi. I'm new here ...Glad to find this site.

Welcome Lynnie! I'm glad to have this site too. I have had so many questions answered and feeling validated here. I hope you will rally and find the right doctor to help you. You are incredible just to keep going in the face of your daily struggles. Stay strong mentally and always, always hope.

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I just wanted to thank all of you for your feedback and positive support. It really helps to know there are so many others out there who have been through the same thing. That was a good point about MS, and it is really hard to find a doctor who is willing to treat my condition -- even a so-called expert. I hope you all don't mind that as a new person, I am posting my different questions. Thank you for being there!

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Welcome to dinet Lynnie,

I hope you'll find answers to some of your questions here, as well as a lot of support.

I've been dismissed by a lot of specialists and a bunch of ER drs before getting my POTS diagnosis...and after.

If I end up going to the ER they will still treat me like an anxiety case - regardless of my complains their first questions are usually about my heart - is it racing?, my breathing - am I hyperventilating? and about taking my meds - particularly the clonazepam they know I'm on. Despite trying to explain to them what I have been diagnosed with, I still have not met an ER dr that is familiar with POTS. I mentioned dysautonomia once (and please I do not intend this to be offensive to anyone) only to be told that I don't look Jewish. I think the dr thought of familial dysautonomia which is almost exclusively encountered in Ashkenazi Jews.

Alex

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*perks up* There's something called familial dysautonomia which is found in Ashkenazi Jews? I'm ethnically Jewish, and I have EDS and autonomic problems running in my family. *googles* Ah, right, totally different condition, then.

And yes, "You don't look Jewish," is indeed an inappropriate response. It wouldn't even be appropriate if you had just announced that you were Jewish, or raised the subject in another way.

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Batik,

I apologize once again. I didn't mean to point any fingers.

The comment that dr made just showed me how little they know about POTS and dysautonomia. I knew at that time about familial dysautonomia so I didn't engage in a more detailed discussion on the topic with the dr. Needles to say that I found his remark totally inappropriate.

Alex

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I don't get it. I can see how this happens before diagnosis and even then it's horrible, but you have the diagnosis and he's choosing to dismiss it? Maybe he's been reading all those studies that say POTS is caused by deconditioning and somatization. I'm really curious who this NYC dysautonomia expert is? I'm in NJ and have seen NYC Doctors. Can you pm me? I think he needs a brochure!

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Unfortunately, your doctor experience is one that i think we can all sympathize with you on. If the doctor is not willing to help you, you can always request a new one and work from there if possible. There is an important component to your question though that i believe needs to be addressed. In the sense that doctor's use "anxiety" and "psychological" issues as a cop out, they are neglecting that there is something physical going on in your body that you have little to no control over. On the other side of the fence, keeping anxiety levels low and avoiding stress makes my pots symptoms less prominent. So is there a psychological part to pots? I would say yes. Is it the 100% cause of symptoms that most ignorant doctors suspect--no. For me i would say psychological aspects play about 20% into the disease. So for me it is important to maintain a healthy psyche, but no amount of saying "calm down" to myself could ever do what my medication does.

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Like everyone else here. I have been dismissed as anxious. My family doctor of 11 years told me I had anxiety and gerd and that I needed to relax and eat! One cardiologist looked at my BP and heart rate and told me I was also anxious and that was in the first minutes of meeting me, he hadn't even gone over any of my records. He told me I needed to address my weight loss. Even after being sent to a specialist by a doctor that finally felt it was POTS, the "specialist" told me yes it was POTS, but I didn't need to see him just continue my BP meds and eat lots of fruits and vegetables!

Just keep searching for doctors. I currently have one that is kind of helping and I am looking into a consult with Cleveland Clinic. The doctors go home to their lives, we have to go home to this, so don't let them tell you there is nothing wrong. Hopefully one day, more doctors will realize what this is.

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I was dismiessed sooo many times in the past few years I cant even count the doctors. Doctors who told me it was in my head and didnt run tests or even examine me. Its hard to not get discouraged and give up. BUT in the mix of all the dismissals I have found some amazing doctors. I believe they come few and far apart. Dont give up! Hopefully you will find one soon

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If this isn't disturbing, I don't know what it. While doing an exhaustive search on hyper pots before my appt with cardiologist this article came up.

It's called 'autonomic impairment in borderline personality disorder'

Wow!

http://www.eric.ed.gov:80/ERICWebPortal/search/detailmini.jsp?_nfpb=true&_&ERICExtSearch_SearchValue_0=EJ860847&ERICExtSearch_SearchType_0=no&accno=EJ860847

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Kitt it does get worse!!! With studies like this one: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365276/

"Moreover, in postural tachycardia syndrome, which commonly occurs with hypermobility (and may have a common basis in collagen variants), heart rate acceleration compensates for dysfunctional vasoconstriction giving rise to physiological symptoms (e.g. palpitations and light-headedness) that are shared with panic and anxiety states.3 Such deregulated responses are likely to affect neural processes supporting emotional feelings.4,5

Differences in the structural integrity of temporal and parietal cortices may underlie wider behavioural phenotypical expression of hypermobility: abnormalities in superior temporal cortex are also seen in autism.11 Inferior parietal cortex can affect proprioceptive awareness and hypermobility is itself linked to dyspraxia.1 Our findings suggest that processes compromising function in neuro-developmental conditions may occur in individuals with hypermobility, putatively enhancing vulnerability to stress and anxiety."

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I got told by my GP that it was normal for your heart rate to go up by 30-40bpm when standing and that POTS simply did not exist. He also told me that EDS was too rare for me to have.

A neurologist said I had somatiform disorder despite his staff recording a blood pressure of 80/50 and a heart rate of 54. I felt like I was dying!

I promptly changed GPs thanks to Anna on this thread! and the neurology team at the local hospital refuse to see me despite acknowledging I have POTS and EDS. My current GP and a private rhuematologist asked them to see me due to the myasthenia gravis symptoms I display and they flat out refused. Great care!

My sister has the same as me and she is regularly challenged about her diagnosis, Ive been lucky so far since recieving the diagnosis. But I am sure in the future I will come up against ignorance in the medical profession.

Rach

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If this isn't disturbing, I don't know what it. While doing an exhaustive search on hyper pots before my appt with cardiologist this article came up.

It's called 'autonomic impairment in borderline personality disorder'

Wow!http://www.eric.ed.g...&accno=EJ860847

Maybe these people actually have dysautonomia and were misdiagnosed with a personality disorder?

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That was the first diagnosis my daughter's PCP gave her "anxiety". After getting diagnosed with POTS she also saw a POTS specialist who said that she did have POTS but that she was also "anxious and depressed" and that is why she was unable to tolerate meds and that she should see a therapist. Really?????

I'd be anxious and depressed too if I felt like I was having a heart attack, had trouble breathing, and had lost the active life I once knew.

I think we finally found a doctor that gets it but she has only seen him one time. Time will tell . .. . ..

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I know the cardiologist I saw at Cleveland Clinic said she had NEVER had a patient come thru her autonomic lab who hadn't gotten labeled with anxiety and/or depression somewhere along the line before they got to her.

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I've actually found it really helpful to have a psychologist on my treatment team. That way, when someone suggests that it's all in my head, I can say, "No it isn't. I already have a psychologist and he says that I'm anxious because I'm sick. I'm not sick because I'm anxious." :P

In all seriousness, my therapist really has been helping me come to terms with this whole disease and disability thing. He's a good dude.

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