POTS and Psych

Two of my sons have had POTS. My oldest, when he was 15 for about a year, it has resolved completely now and he is 17. And my second oldest who is now 15 has it. Doc said that it does tend to be females, but otherwise my sons fit the profile of being tall and thin. He said it would probably resolve by the time they were 21. Treatment was to increase fluid/salt intake and that worked, but we really have to keep up with it in the summertime.

I have POTS. I was diagnosed at age 29. I was not a new mom. My children were 10 and 5 when I was diagnosed. I have no psychiatric conditions. I am a nurse. I work full time. I had to take intermittent FMLA when first diagnosed, but have not taken any FMLA in 3 years. I had to switch jobs and leave bedside because I can't be on my feet for long. My POTS occurred after a streak of bad infections starting with shingles at age 29, then multiple bouts with diverticulitis requiring hospitalization and then pyelonephritis leading to sepsis requiring hospitalization. They believe my POTS is autoimmune in nature and that it caused damage to my autonomic nervous system causing the POTS. They said I may or may not recover and if people do it's usually within 5 years. I'm about 4 years in and much better but still medication dependent, but well controlled on just a few meds to control my immune system and something for my HR/BP. I have to increase salt and water and haven't fainted in almost 1.5 yrs. Unfortunately, POTS is highly stigmatized. Please know it is common for women to develop it after infections or childbirth. They might even feel better during pregnancy and then relapse after birth. Psych problems are common such as anxiety and depression because POTS alters people's lives. I know a nurse who developed it as a teen, recovered, and when we graduated nursing school she got sick again. She had to resign her nursing job and she has been home bound since then. A lot of POTS patients can't keep jobs, pay bills, afford their meds, are home or wheelchair bound. Some faint the instant they stand up because they have completely lost the ability to compensate from sitting to standing.

Just out of curiosity, has anyone ever taken care of POTS patients (postural othorstatic tachycardia syndrome) and notice a trend in psych issues as well? All POTS pts have been young, female, new moms and have multiple psych problems. Just curious if anyone else has experienced this?

What do you mean by "psych problems"? Do you mean things like schizophrenia or personality disorders, or anxiety and depression?

I have cared for POTS patients and have noticed a correlation between this diagnosis and co-existing anxiety and depression. As mentioned in the post above, this is a life altering diagnosis that also carries a stigma with it, much like cyclic vomiting or fibromyalgia. People often believe that there is nothing wrong with the person and that they're just being "dramatic", and often, they have to see multiple doctors, including specialists, before getting a diagnosis. If the person is not medically savvy, this can compound the outside appearance of having "psych issues" as they try to navigate the health care system and understand what is happening to them.

What do you mean by "psych problems"? Do you mean things like schizophrenia or personality disorders, or anxiety and depression?

I have cared for POTS patients and have noticed a correlation between this diagnosis and co-existing anxiety and depression. As mentioned in the post above, this is a life altering diagnosis that also carries a stigma with it, much like cyclic vomiting or fibromyalgia. People often believe that there is nothing wrong with the person and that they're just being "dramatic", and often, they have to see multiple doctors, including specialists, before getting a diagnosis. If the person is not medically savvy, this can compound the outside appearance of having "psych issues" as they try to navigate the health care system and understand what is happening to them.

Exactly. Thank you. I belong to many online POTS support groups and many go years before receiving a proper diagnosis. Most are told to go see a psychiatrist because their symptoms "are all in their head." I was lucky to have my medical knowledge and knew to advocate for myself, and I went straight to an Electrophysiologist when my heart rate was 160-200 upon standing and I was fainting. I went through a 24 hour monitor first, and then a 30 day holter monitor, and then a tilt table test, which I failed within a few mins. I was lucky to be diagnosed as quickly as I was. My EP manages me here at home and twice a year I see the countries leading researcher on POTS. I also have a neuro at Cleveland Clinic and a GI doctor, as unfortunately with autonomic disorders comes GI motility disorders. I have chronic migraines as a result of my body's inability to maintain a decent BP, which is also common in POTS patients.

I have POTS. I was diagnosed at age 29. I was not a new mom. My children were 10 and 5 when I was diagnosed. I have no psychiatric conditions. I am a nurse. I work full time. I had to take intermittent FMLA when first diagnosed, but have not taken any FMLA in 3 years. I had to switch jobs and leave bedside because I can't be on my feet for long. My POTS occurred after a streak of bad infections starting with shingles at age 29, then multiple bouts with diverticulitis requiring hospitalization and then pyelonephritis leading to sepsis requiring hospitalization. They believe my POTS is autoimmune in nature and that it caused damage to my autonomic nervous system causing the POTS. They said I may or may not recover and if people do it's usually within 5 years. I'm about 4 years in and much better but still medication dependent, but well controlled on just a few meds to control my immune system and something for my HR/BP. I have to increase salt and water and haven't fainted in almost 1.5 yrs. Unfortunately, POTS is highly stigmatized. Please know it is common for women to develop it after infections or childbirth. They might even feel better during pregnancy and then relapse after birth. Psych problems are common such as anxiety and depression because POTS alters people's lives. I know a nurse who developed it as a teen, recovered, and when we graduated nursing school she got sick again. She had to resign her nursing job and she has been home bound since then. A lot of POTS patients can't keep jobs, pay bills, afford their meds, are home or wheelchair bound. Some faint the instant they stand up because they have completely lost the ability to compensate from sitting to standing.

Thank you for sharing! I was really just curious because there seemed to be a correlation but I haven't seen enough of it to know enough about it. I didn't mean for this post to be offensive in any way. I've done a little research on it but have never spoken to another individual who has it or experienced what it's like other than what I've seen from a patient's perspective.

What do you mean by "psych problems"? Do you mean things like schizophrenia or personality disorders, or anxiety and depression?

I have cared for POTS patients and have noticed a correlation between this diagnosis and co-existing anxiety and depression. As mentioned in the post above, this is a life altering diagnosis that also carries a stigma with it, much like cyclic vomiting or fibromyalgia. People often believe that there is nothing wrong with the person and that they're just being "dramatic", and often, they have to see multiple doctors, including specialists, before getting a diagnosis. If the person is not medically savvy, this can compound the outside appearance of having "psych issues" as they try to navigate the health care system and understand what is happening to them.

I should have worded it better... I blame it on asking this at the end of a 12 hour night shift. "psych diagnoses" is what I was going for, I realize how ignorant it sounded. Thanks for your response.

I am glad you asked and glad I could offer some insight! I appreciate the fact that you wanted more info. There is a wide range of how incapacitated it causes people, I have found. The specialist that I have to travel far to see kind of jokes that I am a rose compared to most of his patients and really I am really well off which I am very thankful for. I know some POTS patients have gtubes and TPN, chronic fatigue syndrome, fibromyalgia, chronic migraines, etc. Some do end up needing pacers, etc. Every POTS situation is truly unique and no two cases are the same. One thing I do use at home is a shower chair because heat greatly exacerbates my symptoms, as it does most people, so I would always make sure that's an option for patients and not to leave them unsupervised in a shower. I don't take a shower when I'm home alone because I have passed out in the shower in the past and hit my head and was out for a little bit. [emoji1]

schoolRNapril said:

I don't take a shower when I'm home alone because I have passed out in the shower in the past and hit my head and was out for a little bit. [emoji1]

OMG! That's terrifying! 

I have cared for a patient with POTS who had it for multiple years and had to have IV fluids even outside of the hospital. I could see how going to prom hooked to an IV pole might lead to some depression or anxiety. I also think it is a misunderstood and isolating disease which could also contribute to psychological stressors. It is a form of Dysautonomia, so having a neurological origin I think it would be very likely for their to be psychological effects as well. It may also have to do with the medications for it. Although I am not familiar with those.

I know one person who self diagnosed POTS and several other conditions but she's a bona fide hypochondriac. New ailments discovered weekly if not daily. Quite often when she encounters a patient with a condition especially if fascinating or unique.

A life altering condition like POTS (not knowing when your vitals might change and risk of syncope) could easily lead to situational depression, self isolation and social anxiety. Especially if undiagnosed or doubted by others.