Contents:

An Open Letter To Doctors (Regarding the Anxiety Bias)

Dear Doctors:

I am a female.  I have an illness.  Because of many of your biases towards young women, women in general, and POTS (Postural Orthostatic Tachycardia Syndrome) sufferers, my illness was blamed on anxiety for many years.  This not only happens with my particular illness, but with many lesser known and rare illnesses.  I am not only speaking to you male doctors who are guilty of this, but the female doctors as well - who have been just as condescending and dismissive as their male counterparts.

My illness is categorized as a dysautonomia. My form of dysautonomia includes POTS (Postural Orthostatic Tachycardia Syndrome), and a few others that I am now finally being tested and treated for.  It has been an almost decade long journey, and because of this "anxiety bias", I am just now getting the correct testing and treatment.  I had to let my illness progress and be so sick that I was hospitalized for almost nine months and almost died for most doctors to take me seriously.   When I first came to you for help, I was experiencing REAL symptoms.  I have no history of anxiety, depression, or any mental health illnesses.  Though - even if I did, you still should have listened to me.

After the first few years of being told I had anxiety (even with a positive Tilt Table Test for POTS), I had read the medical journals and literature, and self diagnosed myself with dysautonomia.  I brought this information to my internist and he agreed with me.  He sent me on to find treatment from doctors he thought could help me.  Unfortunately, I was told bluntly, "If you really had dysautonomia, you would be dying the hospital," and , "you just have anxiety and panic attacks, " and - my favorite - "you are just going to have to learn to deal with being dizzy and your heart racing, it is just anxiety."  These are exact quotes, all from local Neurologists, who I have found to be notoriously unhelpful, degrading, cold, and unwilling to help find the cause or treatment for my symptoms.  I have seen 8 local neurologists, who have all either dismissed me, or have told me, "I don't want to deal with you, dysautonomia is too complex, and I don't know anything about it."  These things were said after I had a positive Tilt Table Test, the standard for diagnosing POTS.

Many of my daily symptoms are similar to those of anxiety.  Anxiety responses are controlled by the same nervous system that is malfunctioning in me.  This is an except from the journal article Postural tachycardia syndrome and anxiety disorders  (by Svetlana Blitshteyn, Clinical Assistant Professor of Neurology, State University of New York at Buffalo School of Medicine and Biomedical Sciences):


"The results of the study demonstrate that patients with POTS do not have an increased prevalence of anxiety disorders compared to general population, thereby challenging a common misconception that patients with POTS are more likely to have anxiety disorders. The study by Raj et al. is in agreement with two other studies that differentiated POTS from anxiety disorders. One study showed that excessive heart rate response during a tilt table test was not due to anxiety (2), and another one demonstrated that symptoms of POTS were phenomenologically different and clinically distinguishable from panic disorder symptoms (3). Taken together, the three studies provide evidence against a hypothesis that POTS and anxiety disorders are linked either by association or causation. "

I have a release of norepinepherine (adrenalin) in response to my blood not staying where it is supposed to, and pooling in my extremities and abdomen, therefor dropping my blood pressure.  The release of norepinepherine and catecholemines in an effort to cause my vessels to constrict in POTS itself causes anxiety - through sympathetic over activity among other things.  Even changes in blood flow in the heart can result in feelings of fight or flight. Since anxiety, panic and POTS all involve the same branch of the autonomic system, the feelings are very similar.  But the test results do not lie.  I had a positive tilt table test back in 2003, and it was ignored on many occasions.  I was dismissed by many of you, especially Neurologists, and told I couldn't possibly be as sick as I was feeling, and that it was all in my head or due to anxiety.  

Throughout the almost decade of you giving me blank looks, telling me I am just having anxiety, and being forced to try medicines for depression and/or anxiety that I reacted very badly to, I have in fact, developed secondary anxiety (which I was diagnosed with in 2006 as being secondary as a result of my medical conditions).  I was not listened to in the hospital in 2011 when I had been diagnosed with 5 DVTs from the negligence of a PICC line, and I was having severe suffocating chest pains.  I was told it was "just my POTS and anxiety".  After a few days and trips back to the ER, the doctors involved finally discovered I was having multiple bilateral pulmonary embolisms, and had a 2 cm blood clot in my right atrium.  I knew something was wrong, but you did not believe me, and it almost killed me.  I also have a chemical intolerance, and react very strangely to many pharmaceutical drugs, and the reactions can be scary.  I have developed random reactions to foods and other allergens - for which I am now being tested for Mast Cell Disorders (another rare and under diagnosed group of illnesses), but once again, I was told I am over-reacting and anxiety is to blame.  I have told you about this time and time again, and am very rarely listened to.  The combination of these issues: POTS, frightening reactions to medication, anaphylactic reactions to allergens, and almost dying last year, have in fact caused me great anxiety.  I think they would cause YOU great amounts of anxiety as well.

According to an article published in The Journal of Neurology and Neurosurgical Psychiatry by Raj et al, "Patients with postural tachycardia syndrome (POTS) often appear anxious and report inattention. Patients with POTS were formally assessed for psychiatric disorders and inattention and compared with patients with attention deficit hyperactivity disorder (ADHD) and control subjects."

The results and conclusions of the study:

"Results: Patients with POTS did not have an increased prevalence of major depression or anxiety disorders, including panic disorder, compared with the general population. Patients with POTS had mild depression. They scored as moderately anxious on the Beck Anxiety Inventory but did not exhibit a high level of anxiety sensitivity. Patients with POTS scored significantly higher on inattention and ADHD subscales than control subjects. These symptoms were not present during childhood.
Conclusions: Patients with POTS do not have an increased lifetime prevalence of psychiatric disorders. Although they may seem anxious, they do not have excess cognitive anxiety. They do experience significant inattention which may be an important source of disability"



I am not the only one. Time after time, women, POTS sufferers, people with rare diseases, and younger girls are told anytime they have an elevated heart rate, blood pressure issues, or random unexplainable neurological or autoimmune symptoms that they are just stressed out, have anxiety, or in the case of the New York teens recently in the news - mass hysteria.  (3/9/12 UPDATE!  The LeRoy girls are being found to have PANDAS, an infection autoimmune disease!) Anxiety is a real disorder and issue for both men and women, and must be investigated - IF NO OTHER CAUSES FOR SYMPTOMS ARE FOUND.  The causes must be tested for first, not just blamed on anxiety.  Patients experiencing sudden onset of panic attack like symptoms should not be dismissed, and should be thoroughly evaluated for POTS and a number of other illnesses and disorders.  If you are incapable of testing for these things, please send your patients to a specialist who is experienced in dealing with them before dismissing them as having anxiety.

As a doctor, you took an oath to "do no harm".  The persistent or even occasional dismissal of your patients due to anxiety like symptoms is doing harm.  Being cold, condescending, and unwilling to help guide a patient to the resources needed for them to obtain treatment, is doing harm.   Being unwilling to sit down in front of a computer or your thick medical dictionaries and look up new research relating to your patients symptoms is doing harm.  I have luckily found a group of wonderful new doctors willing to do whatever it takes to help me regain function, but many patients have not. 

I challenge all doctors out there to set your egos aside, and commit to finding answers for your patients, even if it takes a little extra time and work.  It may save them years of suffering and increase their chances of recovering or going into remission.  It may even save their life.  This is, in fact, what you pledged to do when you became a doctor.  So please start doing it.

Sincerely,
Claire Martin
Founder: STOP POTS Virginia
Owner: Bella Flora

24 comments:

  1. Replies
    1. Well said ~~~ an all too familiar story of doctors trying to fob people off, ( and I agree, that it would seem to be more often with women/girls ~~~ 'The Hysterical Woman Syndrome.')

      I think that all of us with some kind of dysautonomia, show incredible strength to keep on fighting, not only the disease, but the professionals and the system whom don't always listen, even when there are clear and significant medical signs presented.

      I agree, this anxiety bias is very unfair and unprofessional. Thank goodness that there are doctors out there who do understand and are trying to help and I hope that all of my fellow dysautonomia sufferers are lucky enough to be able to find a good doctor. (Although it should not be down to luck and the medical profession needs to catch up on its understanding and management of these problems.)

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    2. Thanks, and amen. How sad that we have to go through literally dozens of doctors to find a few that "get it"!

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    3. Amen...well said! Doctors in general don't listen, not even to the parents. The whole experience of having an undiagnosed illness for years is hard enough but to be told it is all in your head is horrible. My daughter was told this from age 9yrs until we finally got a diagnoses at age 12 of POTS. I am still angry at the medical profession for what they have done to my daughter and to our family. Doctors need to swallow their "pride" and remember that they don't know everything, so when you can't come up with an answer look for one.

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  2. Thank you for posting this! As a medical student and patient suffering from the effects of both POTS and EDS Type III, I am realizing that the medical leave year I had to take in order to learn how to better manage the effects of both conditions may very well be the most valuable part of my medical training. There is hope... I can promise that I will listen to my patients and take them very seriously!!! :-) Great letter, and I am so, so sorry you had to go through so much in order to get a proper diagnosis. It's wonderful that you are such an advocate for patients with these "Invisible" Illnesses. Way to go! :-)

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  3. Thank you! I've only just begun reading through your site, and I'm so glad I found it! My 10 year old daughter has POTS. She's been sick for 6 months and it's been so hard to find adequate care for her! We even had doctors in the #3 hospital in the US tell us that she had conversion disorder (w/o a mental health eval) and that I must have Maunchousen by Proxy & reported me to social services because I wanted a second opinion!

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  4. It is scary to read your story. So many parallels in my life. I have spent most of my life since about 13 dealing with my invisible problem. The daily battles of fighting whatever it is nearly got the best of me. I struggled with the symptoms and worked. Then it started getting worse the fatigue seemed unbearable. I wrote it all off until I started having visual symptoms. Tried so many doctors and specialists to no avail. I was to the point of giving up. I found help with adderall. With a renewed sense of determination went back to seeing doctors. I was told it was conversion/hysteria causing all of my problems. With no help I started to give up. I started seeing a gp just to try and manage my problems and get the adderall that helped legally. He wanted to help find out what was wrong and get me off adderall. He started by cutting my 60mg a day to 30mg a day. Then my symptoms came back with a vengeance. When this happen guess what he diagnosis me with anxiety and starts me on zoloft. Know zoloft and adderall together starts helping. Not perfect but better. Still having problems so the doses start increasing. Then I start having gallbladder type pains front and back. The blood test comes back with elevated results but still nothing wrong. At this point I am thinking
    This is just all in my head. By now with zoloft helping I am convinced by the doctors its all in my head and I'm doing it to myself. I start talking to the doctor and tell him I can't stand it any longer and if it is all in my head I can't stop it and start talking about commiting myself to the mental hospital because I can't stand what I'm doing to myself. His reply changed everything for me. It can't all be in your head your blood work is abnormal and you need to see a gi doctor. That gets me on a research project of my own trying to figure out what is wrong with me. I finally come across something that mimic almost all of my symptoms "pots/dysautonomia". I start reading about it and reading peoples stories. It like I could have been reading my own personal journal so many problems I have shared. Then I did the unthinkable I took my pulse lying down then standing up. I didn't believe my results so I got a heart monitor from walmart and did it again. 89bpm lying down then standing 145bpm. Made an appointment back with my doctor and told him. Again disbelief but he did the test too. After over an hour of talking and me telling him all my symptoms and how they relate and him leaving coming back doing research he agreed it might be dysautonomia and wanted me to see a cardiologist but it could be pots because "blood pressure didn't drop" as most know that's not the case but I wasn't going to argue with him I finally on my way to get some real help. Hoping that soon I will get some real help. The cardiologist did the tilt test and haven't heard back from him but the tech told me some of my readings. Lying down 80bpm while standing 151bpm with a max pressure reading 171/112. I don't have a diagnosis yet but almost 25 years of dealing with this and being written off as crazy there is actually some measurable clinical evidence that there is actually something wrong. The last few years have been the hardest and no answers or being told its all in your head makes its worse. But don't think it just all because of your sex. I am a 37 year old somewhat succesful white male with a college education and was first told I had conversion disorder then anxiety. Doctors use that as a catch all when they are too lazy to figure it out. And thankfully I did because I was getting it a breaking point I wouldn't be able to return from. Never give up never give in.

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  5. It is scary to read your story. So many parallels in my life. I have spent most of my life since about 13 dealing with my invisible problem. The daily battles of fighting whatever it is nearly got the best of me. I struggled with the symptoms and worked. Then it started getting worse the fatigue seemed unbearable. I wrote it all off until I started having visual symptoms. Tried so many doctors and specialists to no avail. I was to the point of giving up. I found help with adderall. With a renewed sense of determination went back to seeing doctors. I was told it was conversion/hysteria causing all of my problems. With no help I started to give up. I started seeing a gp just to try and manage my problems and get the adderall that helped legally. He wanted to help find out what was wrong and get me off adderall. He started by cutting my 60mg a day to 30mg a day. Then my symptoms came back with a vengeance. When this happen guess what he diagnosis me with anxiety and starts me on zoloft. Know zoloft and adderall together starts helping. Not perfect but better. Still having problems so the doses start increasing. Then I start having gallbladder type pains front and back. The blood test comes back with elevated results but still nothing wrong. At this point I am thinking
    This is just all in my head. By now with zoloft helping I am convinced by the doctors its all in my head and I'm doing it to myself. I start talking to the doctor and tell him I can't stand it any longer and if it is all in my head I can't stop it and start talking about commiting myself to the mental hospital because I can't stand what I'm doing to myself. His reply changed everything for me. It can't all be in your head your blood work is abnormal and you need to see a gi doctor. That gets me on a research project of my own trying to figure out what is wrong with me. I finally come across something that mimic almost all of my symptoms "pots/dysautonomia". I start reading about it and reading peoples stories. It like I could have been reading my own personal journal so many problems I have shared. Then I did the unthinkable I took my pulse lying down then standing up. I didn't believe my results so I got a heart monitor from walmart and did it again. 89bpm lying down then standing 145bpm. Made an appointment back with my doctor and told him. Again disbelief but he did the test too. After over an hour of talking and me telling him all my symptoms and how they relate and him leaving coming back doing research he agreed it might be dysautonomia and wanted me to see a cardiologist but it could be pots because "blood pressure didn't drop" as most know that's not the case but I wasn't going to argue with him I finally on my way to get some real help. Hoping that soon I will get some real help. The cardiologist did the tilt test and haven't heard back from him but the tech told me some of my readings. Lying down 80bpm while standing 151bpm with a max pressure reading 171/112. I don't have a diagnosis yet but almost 25 years of dealing with this and being written off as crazy there is actually some measurable clinical evidence that there is actually something wrong. The last few years have been the hardest and no answers or being told its all in your head makes its worse. But don't think it just all because of your sex. I am a 37 year old somewhat succesful white male with a college education and was first told I had conversion disorder then anxiety. Doctors use that as a catch all when they are too lazy to figure it out. And thankfully I did because I was getting it a breaking point I wouldn't be able to return from. Never give up never give in.

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  6. Bravo Bravo, thank you from all your dysta systas (and brothers)..speaking from the perspective of an (older) hyperpots diagnosed ie... finally believed; late in her fifth
    decade of life, i wont go thru what has already been shared... same frustrations, experiences.years of being told its everything including all in your head.. being ashamed that perhaps somehow i was making this happen... Im blessed with a few incredible drs that finally did believe if not in what this was called but in me.. their patient and what they saw with their own eyes...OPEN eyes and OPen MInds...... Hopefully this will become more and more the norm and first response drs from pediatrics to family drs and gyn will be educated as well and when they see so many seperate parts of ones body seemingly unconnected having issues they will have a AHA! moment about the connection to the ANS....and its devastating possibilities,Shalom, Sue

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  7. All I can advise everyone else and myself is to keep fighting for yourself/your child. My daughter had her first POTS episode at age 10. After multiple trips to specialists who found nothing wrong, in desperation we took her to a psychiatrist. He put her on Effexor XR which she took for over a decade, because it helped to reduce, but didn't totally eliminate) most of her symptoms. We had never heard of POTS and did not know that Effexor is sometimes used to balance norepinephrine levels in POTS Patients. We assumed she had an anxiety disorder.

    Then, in college, the Effexor became less effective, and her POTS episodes (severe dizziness, fainting, etc.) became more severe and frequent. Our family doctor (who still thinks my daughter has an anxiety disorder) tentatively diagnosed her as also having POTS, which was verified by a tilt-table test and an evaluation at Vanderbilt University. She was told to stop taking the Effexor XR (which was an 18-month long, truly horrific process).

    She is now seeing both a psychiatrist and a POTS specialist and is taking Xanax, Prozac, Pindolol, Clonidine, Fludrocortisone, salt tablets, and just started Adderall, which seems to be helping some. She is only 25 years old and now totally incapacitated by POTS... And yes, she now has secondary anxiety caused by the stress of having a debilitating, unpredictable health condition, and mistreatment by ignorant medical personnel. We continue to struggle and seek answers.

    Interestingly, our family doctor's daughter was recently diagnosed with POTS after a head injury, and the doctor is only now making a serious effort to learn more about POTS, but I think she still doesn't understand that POTS, itself, causes anxiety-like symptoms.

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  8. Great letter!.....Sorry so many have been struggling with POTS..I was diagnosed last year, at age 61.....went to hospital for chest pressure and shortness of breath.....(first time I actually went to an ER)...cardiac work-up was Negative..but had a few episodes of heartrate in 150's during the night, when I got out of the hospital bed....doctor's figured it was just an arrhythmia....and was discharged. I kept getting really short of breath with heart pounding, everytime I stood up at work. I called the cardiologist and told her what was happening and got an order for a 24-hr holter monitor...THEN, sure enough, my cardio called me to tell me I had POTS....heartrate went from 60-70's to 150-160 everytime I got up. Luckily, my rate comes back down after a few minutes. Went to Mayo clinic in Jax....confirmed POTS, but I do have a "delayed" response from the autonomic nervous system....I'm fortunate so far, and living with symptoms of fatigue, palpitations, shortness of breath...tried different meds to help, but reacted to everything!....I just sit down when dizzy and heartrate goes up!....Love this site...appreciate all of the information! Be well.

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  9. I agree to almost all of what you wrote with the exception that it is my son who has been subjected to the abuse of physicians. He has also been told by neuro that in spite of the Mayo diagnosis, it can not explain all the symptoms, like weakness and tremors. Much can be attributed to basic lack of education and "blame it on the patient"!

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  10. Your letter really hits home with me. Two months ago doctor's found a PE and then all these symptoms started. I was told I was just anxious from the trauma of the blood clot but I at least they scheduled a tilt table test for me. It was positive but both my neurologist and cardiologist just shrugged their shoulders at me with "I don't know what to tell you, go eat some salt". Now I'm sitting here going "now what?".

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    Replies
    1. My symptoms started before getting the blood clot in my brain properly diagnosed. I am told the blood clot is now gone, but my POTS symptoms along with daily migraine, fatigue, and cognitive difficulties are still there. It's not anxiety; I didn't even know I had a clot when my symptoms started to get the best of me. Have you received any additional answers?

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  11. Your description reflects our family's experience for one of our teens with POTS. We were fortunate to find a POTS specialist after a year of hearing "anxiety disorder". The specialist blew the lid off the anxiety diagnosis in one visit.
    But I can tell you that even with a physician family member saying the diagnosis was POTS, before the specialist confirmed it, other physicians did not believe it. There are many symptoms for POTS patients, and not all are present all the time. The anxiety is physiologic anxiety from the POTS and not a primary "anxiety disorder". Also, this "invisible disability" causes many to discount the reality of suffering and actual symptoms people experience. It's very hard for the sufferers of POTS who may not appear to be sick in their physical appearance.

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  12. Just a quick story relating to a great website. I am a 64 year old male. Began running in 1979 after watching the Boston Marathon on the news one night. Next day got rid of my cigarettes and laced up my Chuck Taylor tennis shoes and hit the road. 1 year later qualified and ran my first Boston Marathon. Ran many races in the next couple years then acquired a virus. Continued to train but at slower level and eventually could not run without. Extreme fatigue. Ended up in Johns Hopkins Hospital in Baltimore. spent 10 days and a bill totaling 35 thousand dollars. A specialist was examining me and said are you still running and I replied I had just finished the Cherry Blossom 10 miler. He asked what my time was and I indicated 58 minutes. 58 minutes!!!! He replied, I could not run 10 miles in 58 minutes....Why are you here in this hospital? I'm here because I should have run 55 minutes. He gave me a look I'll not forget. Did extensive exercise tests and did well but was exhausted afterward. gave me a prescription for Valium and a letter stating I had Neurocirculatory Asthenia (called Pots now) and stated I had personal problems I was not dealing with. Recovered by cycling as I could hardly run at all. Fast forward to 2012 and after 30 years as a cyclist including having a team with many awards for triathlons in the 80's got the flu in January 2013. Recovered but started noticing increased cardio stress the next couple months. Finally could not ride at all my late March. Suffering extreme distress ended up in local er with extreme high blood pressure...170/100.....normally 110/50. Explained my main problem was as soon as I started riding my pulse was already up to 130 BPM and was exhausted after only 15 to 20 minutes. The cardiologist finally let me stand and saw my pulse go from 65 to 127 BPM in one minute. Initially checked my charts and said I may show symptoms of Pots but I didn't fit the criteria which he stated was girls in the teens to the 30's. I was going to say the only difference between me and the demographic was I was a male and 64 but just wanted to go home and not have any confrontation. Diagnosed with extreme anxiety. The moral is the more things change the more they remain the same! Even small things like running/swimming/cycling any sports that people devote sometimes a lifetime to are as important as the food we eat or the air we breathe. Enough said. Thanks for anyone who reads this post and may find a common thread good or bad
    jay

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  13. i am a 17 year old female ,Ive been going through the same problem i told my doctor how ive been feeling and he said its just anxiety. I know its not ive had anxiety before, this is not that, but he wont listen because he doesnt believe in POTS or dysautonomia because he is never heard of it. he had to ask me what it was ib told he that it was a disorder with your autonomic nervous system, so the he did a test on peripheral nervous system....so stupid. he is know sending me to a pediatrician and said if he thinks its anxiety he thinks i should go see a counsellor. My mother and i both believe its not anxiety but i dont know what to do about it, i am tired of feeling this way....HELP!!!

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  14. I can relate to so much of this. I am now 22 and have POTS as a result of an uncommon neuromuscular disease CMT, which is degenerative and currently without cure/treatment. My significant POTS symptoms emerged when I was approaching 17. I was not yet completely collapsing , and I was told I was exaggerating and that it was in my head. With the POTS and the general "attack" of not having the "signal" for blood to go to my brain, I was accosted with entire episodes varying in severity that included a massive delay in breathing , delays all the way around, so once I got to the point that I was collapsing , unable to speak clearly, unable to move , slowed breathing with random gasps, and sometimes complete confusion, I was still met with little to no answers. So for the span between initial symptoms where I was told I was "being dramatic" or "It is just stress" and between the point of being bed bound because I could not sit up or get up without collapsing, I received a lot of degrading and upsetting answers. So final conclusion, I met with a great neurologist who knew more about my original condition. I mentioned the issue to him in a basic way, expecting the answer of " Oh, its nothing", "Sounds like anxiety" , etc. He instantly knew what it was, why it was happening, that is was a very recent connection seen with CMT patients and that there were 3 main medicines that could help it, see a cardiologist. I had seen approx. 4 cardiologists before age 21 who had no answer. No one even connected the change in position to the change in blood pressure and heart rate! This one spoke with my neurologist and let me tell you once we got it "right" (diagnosis and medication) it was really, really right!


    So to all of the parents and especially late teen/ early adult women, this is what it is, there is definitely help, there are 3 basic medications out there that helped, florinef, midodrine, and mestinon. YOU ARE NOT CRAZY! I will say, those symptoms alone will lead to a bit of depression but once you have the issue under control, the "fog" lifts.

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  15. My daughter was diagnosed after positive table tilt test. But all the cardiologist told her was drink Gatorade and consume more salt. Seriously, her anxiety is increasing and can't concentrate on college courses. Almost had suicide attempt. What medications are you POTS people taking to directly treat POTS or the norepinephrine levels? Any suggestions would be appreciated.
    L

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  16. I was dx with neurocardiogenic sncope after many doctor visits at age 45, the original dx was because a doctor with a family member with a similar dx knew to do the simple heart rate test (pulse) sit to stand when nothing showed up at the ER. My heart rate was 65 sitting and over 126 when I stood, it is still more than 30 beats up on medication but I no longer get as many symptoms. Mayo Clinic suggests low doses of Beta Blocker for women over age 40 at dx, so if all else fails try some. I too am overly sensitive to medications and responded by getting worse with some of the other medications, or just not responding well. Lots of salt and water, sleeping with my bed at an incline. Increasing gentle exercise (walking everyday, at first with a family member in case I collapsed). 15 years out I am much better, but still must eat a high salt diet, drink fluids and keep to my (reduced) beta blocker. We have found some things wrong with my body over time but none that would explain NCS or POTS. Secondary anxiety due to having no one listen is so real, it took us 7 doctors and over $16,000. Insurance companies would save lots of money with a more informed medical profession. I repeatedly asked Dr.s if it could have to do with blood pressure as certain postures made my head feel better. I have found www.dinet.org and www.ndrf.org to be very helpful websites. Find a doctor who is knowledgeable and sympathetic, and keep trying. Read everything and try all that you and your doctor can agree on. Keep a food water and medicine symptom journal, you'll learn a great deal. Some doctors I have seen have been grateful for the websites. Dinet.org will send brochures to doctors for you and most need to know about the heart rate sit to stand or prone to stand test. How easy is that! I am lucky, my blood pressure often also does odd things so eventually doctors pay attention. So few know the harm being dismissive causes not just to the patient but to the whole family. Youtube now has a few films of folks sick with POTS also. Hang in there, these websites also have lists of doctors by region who know about these things, perhaps that will help you get good care. Thanks to all who wrote its so good to share experience - these experiences much too common, keep taking care of yourselves and eventually we'll change the general medical response! I believe you will get better if you can just keep at it. Breathing exercises for anxiety can calm the nervous system. Even when it is heart related or secondary anxiety. Don't disregard the salt and fluids. It even makes medicines work better for me.

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  17. This is both scary, yet relieving for me to read. I'm 16 and have been diagnosed with POTS since 2010 although my symptoms were no where close to where they are now. I genuinely thought for a solid year that I was an overly anxious person who was lazy and dehydrated (causing dizziness). I knew of my diagnoses, but was only seeing my cardiologist once a year or so. The doctor didn't seem to have a huge concern and simply told me to relax, drink water, and get more rest! I just felt like I was lesser than others for no reason, because I had no understanding of POTS. Now since my symptoms are much worse (I'm laying here in my bed with my laptop on my stomach and water next to me), it is reassuring to know that i'm not insane or creating this issues in my head. I have my appointment tomorrow and hoping for the best.

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  18. Amazing article! Dismissed as anxiety for 23 yrs. for my Newly acknowledgedheart problems, & am being dismissed as anxious for a sudden-onset neurological disorder that has destroyed my life for 3 years now. I'm going to show this to the Neuro I saw today who didn't Believe my newly dx'd heart condition WASN'T anxiety til I showed him the bottle for the prescription I'm on!
    So sick of this. Thanks again!

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  19. "As a doctor, you took an oath to "do no harm". The persistent or even occasional dismissal of your patients due to anxiety like symptoms is doing harm. Being cold, condescending, and unwilling to help guide a patient to the resources needed for them to obtain treatment, is doing harm. Being unwilling to sit down in front of a computer or your thick medical dictionaries and look up new research relating to your patients symptoms is doing harm."

    YES. This is spot on. In April, I saw a rheumatologist because my PCP and I thought I might have fibromyalgia (at the time it seemed like it could be). My weakness had progressed quite a bit by the time I saw my rheumy, so he suggested that the cause was autoimmune. I have spent hours upon hours researching the only autoimmune disease that my presentation fits -- CIDP. It's a rare disease affecting 0.08 to 0.35 per 100,000 people. It's even rarer for my age group (29 and younger). In the first week of May I went to the ER because I couldn't walk and I was admitted to the hospital. I was there for 10 days, and with only blood tests done -- which can't be used to rule out CIDP and other neuropathies -- the doctor there diagnosed me with conversion disorder. I've since then been in a rehab hospital for nearly a month with no improvement in strength. In fact, I'm getting weaker and my other symptoms are worsening. What started off as just demyelination is quickly moving towards irreversible axonal damage. By wrongly diagnosing me with conversion disorder, that doctor has clearly harmed me. All because she didn't want to admit that she doesn't know everything and was only seeing what she wanted to see; did I mention that she left out all of my symptoms with the exception of "weakness in legs?"

    Doctors like that should lose their license.

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