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POTS or conversion disorder?
I am a 45 year old, female college professor recently exhibiting symptoms of POTS. I have a long history of anxiety and depression, including two past suicide attempts. I am well controlled on anti-depressant medication and mood stabilizers. I'm in therapy with a wonderful pyschiatrst who knows me well. I have written and published extensively on issues related to my health history, including a full length memoir focusing on the two overdoses; I specialize in the field of "writing as healing" or "writing toward wellness" and the memoir especially has been the best therapy of my life, helping me to fully examine and understand my psychological issues.
I use this preface to illustrate that though I have a history of pychiatric issues, I also have a history of full analysis and acceptance of those issues.
This summer, while visiting family in Atlanta, I became dehydrated and had to go to the ER via ambulance. My family called 911 after I fell to the ground with the room spinning and could not get up again. I left the hospital well hydrated, walking, and, though tired, completely fine. Later that night, I started falling again, though with no dizziness of any kind. We thought it still related to the dehydration event. Over the next several days, which included traveling to Nashville to see another family member, I kept falling, with more severity. I could not walk, as I would fall nearly every time I got up; I was starting to fall off chairs while sitting, and even tumbled off the bed when I tried to sit up.
I was hospitalized for five days with several teams of doctors assigned to me. I was told initially in the ER that it seemed to be POTS, but more testing would need to be done. When they discovered my history of depression and anxiety, a pyschiatric team was added to the medical, neurological, and and autonomic teams. I was tested/studied for POTS, narcolepsy, and conversion disorder. I was told at various times during the five day period that I seemed to have POTS, except that I didn't faint when I fell. I had some of the symptoms of narcolepsy, but not really, I did not seem to have conversion disorder, but I did have some life stressors (loss of a job and a new relationship--the relationship wonderful in my eyes, but which they said was too serious too suddenly).
I was finally told that I did "technically fit all the criteria for POTS" except that during the tilt table test I fell while my heart rate was skyrocketing instead of after it had skyrocketed. For this reason, they would diagnose POTS. I was released without a diagnosis and told by the last doctor I spoke to that "we can call this a sort of psychogenic POTS, since you have the symptoms but also the life stressors. Hopefully when you go home this will all just gradually go away."
Four months later, it has not gone away. After searching for the right doctor and being put on waiting lists, I was finally able to see a cardiologist (at another well known research hospital) who admitted on seeing me that he knew very little about POTS. I had three episodes of falling in the doctor's office before I saw him. A gaggle of nurses did a number of tests on me. The doctor said that because my blood pressure did not decrease while my heart rate went up, I could not have the disease. Only after I pulled down my pants and showed him the baseball-sized bruises on my legs did he express vague concern and finally said "I can prescribe Midodrine, but it won't do you any good. Because your blood pressure is low, though, it won't do you any harm."
I could finally walk normally with this prescription. At the end of four hours, I can feel its effects wear off and if I somehow forget or am not immediately able to take the next dose, I start falling again. I saw the same cardiologist for a follow up and he said there was no physiological reason the medicine should be helping me. He insisted that although I did have orthostatic tachycardia, I did not have orthostatic hypotension. I told him POTS is orthostatic tachycardia. He said without the hypotension, I did not have POTS and there was no reason the medicine should be helping.
I finally have an appointment this Friday with a POTS specialist. I have been feeling confident that the appointment would confirm the diagnosis. This past week, though, the falling has returned despite the medication. The episodes have been worse, with near-fainiting though I still do not completely lost conciousness. It takes me longer to get up. I am not menstrual (when the symptoms are always far worse).
My husband told me last night he does not believe I have POTS, that my symptoms do not match what is on the POTS website, (they do...), that my symptoms get worse only when I'm just about to see the doctor(s), etc. He believes I have conversion syndrome. So does my sister, and one of my friends. I'm floored. Stunned. Not to have the support of my friends and family is devastating. I don't know how to approach this appt with the specialist. I'm afraid of being told that it isn't POTS, and that it is conversion. I've said since the beginning that whatever it is I want to get well, if it's not POTS fine but it has to be something, that I didn't think it could possibly be conversion but I would re-examine the "issues" with my psychiatrist, which I have been. I simply do not see how this could be psychological, not does my psychiatrist.
What the hell do I do?
I use this preface to illustrate that though I have a history of pychiatric issues, I also have a history of full analysis and acceptance of those issues.
This summer, while visiting family in Atlanta, I became dehydrated and had to go to the ER via ambulance. My family called 911 after I fell to the ground with the room spinning and could not get up again. I left the hospital well hydrated, walking, and, though tired, completely fine. Later that night, I started falling again, though with no dizziness of any kind. We thought it still related to the dehydration event. Over the next several days, which included traveling to Nashville to see another family member, I kept falling, with more severity. I could not walk, as I would fall nearly every time I got up; I was starting to fall off chairs while sitting, and even tumbled off the bed when I tried to sit up.
I was hospitalized for five days with several teams of doctors assigned to me. I was told initially in the ER that it seemed to be POTS, but more testing would need to be done. When they discovered my history of depression and anxiety, a pyschiatric team was added to the medical, neurological, and and autonomic teams. I was tested/studied for POTS, narcolepsy, and conversion disorder. I was told at various times during the five day period that I seemed to have POTS, except that I didn't faint when I fell. I had some of the symptoms of narcolepsy, but not really, I did not seem to have conversion disorder, but I did have some life stressors (loss of a job and a new relationship--the relationship wonderful in my eyes, but which they said was too serious too suddenly).
I was finally told that I did "technically fit all the criteria for POTS" except that during the tilt table test I fell while my heart rate was skyrocketing instead of after it had skyrocketed. For this reason, they would diagnose POTS. I was released without a diagnosis and told by the last doctor I spoke to that "we can call this a sort of psychogenic POTS, since you have the symptoms but also the life stressors. Hopefully when you go home this will all just gradually go away."
Four months later, it has not gone away. After searching for the right doctor and being put on waiting lists, I was finally able to see a cardiologist (at another well known research hospital) who admitted on seeing me that he knew very little about POTS. I had three episodes of falling in the doctor's office before I saw him. A gaggle of nurses did a number of tests on me. The doctor said that because my blood pressure did not decrease while my heart rate went up, I could not have the disease. Only after I pulled down my pants and showed him the baseball-sized bruises on my legs did he express vague concern and finally said "I can prescribe Midodrine, but it won't do you any good. Because your blood pressure is low, though, it won't do you any harm."
I could finally walk normally with this prescription. At the end of four hours, I can feel its effects wear off and if I somehow forget or am not immediately able to take the next dose, I start falling again. I saw the same cardiologist for a follow up and he said there was no physiological reason the medicine should be helping me. He insisted that although I did have orthostatic tachycardia, I did not have orthostatic hypotension. I told him POTS is orthostatic tachycardia. He said without the hypotension, I did not have POTS and there was no reason the medicine should be helping.
I finally have an appointment this Friday with a POTS specialist. I have been feeling confident that the appointment would confirm the diagnosis. This past week, though, the falling has returned despite the medication. The episodes have been worse, with near-fainiting though I still do not completely lost conciousness. It takes me longer to get up. I am not menstrual (when the symptoms are always far worse).
My husband told me last night he does not believe I have POTS, that my symptoms do not match what is on the POTS website, (they do...), that my symptoms get worse only when I'm just about to see the doctor(s), etc. He believes I have conversion syndrome. So does my sister, and one of my friends. I'm floored. Stunned. Not to have the support of my friends and family is devastating. I don't know how to approach this appt with the specialist. I'm afraid of being told that it isn't POTS, and that it is conversion. I've said since the beginning that whatever it is I want to get well, if it's not POTS fine but it has to be something, that I didn't think it could possibly be conversion but I would re-examine the "issues" with my psychiatrist, which I have been. I simply do not see how this could be psychological, not does my psychiatrist.
What the hell do I do?
I read that article in the Oregon newspaper and that is my son exactly. The gradual increase in symptoms and severity. Since he is a boy, he especially lost almost all of his friends. Boys don't have that maternal instinct. No one calls to see how he is doing. Since he can't hang out or play they just don't call anymore. He has one very good friend though that comes over every weekend.
The good part is, my son doesn't have a pity party or do the "why me". When he is feeling well, he is happy and very funny.
The good part is, my son doesn't have a pity party or do the "why me". When he is feeling well, he is happy and very funny.
below is the link for the article you mentioned:
http://www.bendbulletin.com/apps/pbcs.dll/article?AID=/20090531/NEWS0107/905310408
http://www.bendbulletin.com/apps/pbcs.dll/article?AID=/20090531/NEWS0107/905310408
There was a wonderful article about POTS in the Bend, Oregon newspaper earlier this year in the Bulletin, May 31, 2009 "Every Step is a Battle" Family members told me about the article and I have given it to others to read (other family members and the doctor interviewing me for disability, a psychiatrist!). It seems to reach them when I just can't.
Thanks much for the support and information. I have seen the wonderful specialist in Toledo, OH (I'm thinking we are not supposed to use the name of specific doctors in this forum?) and have been positively diagnosed with hyperandrenergic POTS.
Though I knew about this type of POTS from my online research, I did not think it could apply to me because it was said to come on gradually, and mine came on very suddenly this summer. Turns out, I've probably had this all my life without knowing it. Symptoms for this type of POTS include anxiety and panic attacks, which I've been treated for since age 15 (30 years!). It is commonly misdiagnosed as anxiety disorder, and treatment for it includes SSRI's, which I've already been taking for years. "Hints" of the POTS, like heat intolerance, fatigue, clumsiness, migraines during menstruation, etc., I've always attributed to side effects of the meds or to my Hashimoto's Thyroiditis.
I've been told to stay on the Midodrine and of course the SSRI's and was also given a new prescription for clonidine.
This new POTS specialist spent two and half hours with me and my husband, patiently explaining everything, answering all questions and concerns, treating us respectfully. We understand everything completely and have been better able to explain it back to family members, who are relieved, fascinated, and supportive. It is worth mentioning that my sibings and I have a wide variety of auto-immune diseases, including the Hashimoto's, Type 1 diabetes, rheumatoid arthritis, and multiple sclerosis. It is interesting that though we all have different illnesses, they are all related--and btw, in the case of my sister with MS, she too was told pre-diagnosis that her symptoms didn't make sense and she should see a psychiatrist. Thank God we have all been persistent enough to follow through on our own research and medical care, and to have learned over and over again that "we know our own bodies best."
On a side note, the sister who insisted it wasn't POTS, once I explained all this to her, wanted to know if it was hereditary and if she might have the gene. Turns out, she has recently been having panic attacks that she'd not yet told anyone about and which she has been very concerned about. Interesting...!
Though I knew about this type of POTS from my online research, I did not think it could apply to me because it was said to come on gradually, and mine came on very suddenly this summer. Turns out, I've probably had this all my life without knowing it. Symptoms for this type of POTS include anxiety and panic attacks, which I've been treated for since age 15 (30 years!). It is commonly misdiagnosed as anxiety disorder, and treatment for it includes SSRI's, which I've already been taking for years. "Hints" of the POTS, like heat intolerance, fatigue, clumsiness, migraines during menstruation, etc., I've always attributed to side effects of the meds or to my Hashimoto's Thyroiditis.
I've been told to stay on the Midodrine and of course the SSRI's and was also given a new prescription for clonidine.
This new POTS specialist spent two and half hours with me and my husband, patiently explaining everything, answering all questions and concerns, treating us respectfully. We understand everything completely and have been better able to explain it back to family members, who are relieved, fascinated, and supportive. It is worth mentioning that my sibings and I have a wide variety of auto-immune diseases, including the Hashimoto's, Type 1 diabetes, rheumatoid arthritis, and multiple sclerosis. It is interesting that though we all have different illnesses, they are all related--and btw, in the case of my sister with MS, she too was told pre-diagnosis that her symptoms didn't make sense and she should see a psychiatrist. Thank God we have all been persistent enough to follow through on our own research and medical care, and to have learned over and over again that "we know our own bodies best."
On a side note, the sister who insisted it wasn't POTS, once I explained all this to her, wanted to know if it was hereditary and if she might have the gene. Turns out, she has recently been having panic attacks that she'd not yet told anyone about and which she has been very concerned about. Interesting...!
Sorry, I forgot that you had done this (!!!), I have printed this out for my app also xx
Here I have compiled detailed information from the world's experts on the diagnostic criterion of POTS and some critical discussion of any discrepancies between them:
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia--POTS-Diagnostic-Criteria/show/1011?cid=196
I have tried to highlight and focus on common points of contention and gather relevant quotes which might be most useful to doctor-patient dialogue. I hope you will find some of this information helpful in communicating with your physicians. I believe your doctors are incorrect when they tell you that a diagnosis of POTS is excluded due to lack of orthostatic hypotension. There is one other citation I will send directly to you because I do not have a link to it online at this time which corroborates this, so watch your MedHelp inbox for that.
I have to run right now, but I will get back to you more later. I'm sorry you're going through this.
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia--POTS-Diagnostic-Criteria/show/1011?cid=196
I have tried to highlight and focus on common points of contention and gather relevant quotes which might be most useful to doctor-patient dialogue. I hope you will find some of this information helpful in communicating with your physicians. I believe your doctors are incorrect when they tell you that a diagnosis of POTS is excluded due to lack of orthostatic hypotension. There is one other citation I will send directly to you because I do not have a link to it online at this time which corroborates this, so watch your MedHelp inbox for that.
I have to run right now, but I will get back to you more later. I'm sorry you're going through this.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/
http://www.dinet.org/
http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome
I am sorry to hear you are suffering so much and that this is made worse by the disbelief of your family and friends.
I have 'suspected' POTS and have not been given an official dx as I do not faint and my bp does not drop!!!! Mine increases. Although I was treated with fludrocortisone and beta blockers.
Above are a couple of links stating that POTS is dx by an increase in hr. Maybe take some medical literature to your appointment that state the dx criteria. Hypotension is a common finding in POTS patients but not a requirement for dx.
Maybe print some info out for your family/friends to read. POTS is a combination of symptoms that can effect each individual differently and even different on a day to day basis. Their is no uniform of who will experience what symptom. The only criteria that is medically required is, from what I can make out, a heart rate increase of 30bpm or to 120bpm on standing. Altough all other symptoms are taken into account. I am new to this so I am only learning but there are many on this board who will glady offer their advice.
http://www.dinet.org/
http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome
I am sorry to hear you are suffering so much and that this is made worse by the disbelief of your family and friends.
I have 'suspected' POTS and have not been given an official dx as I do not faint and my bp does not drop!!!! Mine increases. Although I was treated with fludrocortisone and beta blockers.
Above are a couple of links stating that POTS is dx by an increase in hr. Maybe take some medical literature to your appointment that state the dx criteria. Hypotension is a common finding in POTS patients but not a requirement for dx.
Maybe print some info out for your family/friends to read. POTS is a combination of symptoms that can effect each individual differently and even different on a day to day basis. Their is no uniform of who will experience what symptom. The only criteria that is medically required is, from what I can make out, a heart rate increase of 30bpm or to 120bpm on standing. Altough all other symptoms are taken into account. I am new to this so I am only learning but there are many on this board who will glady offer their advice.
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