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Guest Alex

New Pots Article By Dr Raj

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wow my legs go ten times a deeper shade of read and purple..... my mom jokes a corpse probably has better circulation than me ;) good article though

Bren

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Thanks for posting. My son's blood pressures are staying up and this is 6th day on 1 mf of florinif. The sad part is that he is still shaking and is not able to go to physical therapy. I just wish I knew what type of POTS he had. However the cardiologist and I know if anymore testing is done his condition could get worse. Trying to avoid this scenario. Hope everyone is having a symptom free day.

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Loved this fact:

The only domain in which POTS patients did not fare worse than the control group was mental health.

I did not understand one thing though, the researcher was mentioning a patient one time and subjects another time; Was this study about one patient or a group?

Thanks alex.

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Guest Alex

Tachy, my understanding is that the article reflects Dr. Raj's overall experience with POTS patients, but he chose the particular case in the introduction as an example.

Aside from the mental health aspect, the other thing worth mentioning is the Psychological Profile section. I know there has been a lot of talk lately about anxiety and/or depression associated with POTS, so I hope this helps:

"Patients with POTS are sometimes clinically diagnosed as having anxiety disorders such as panic disorder. When assessed with a structured evaluation forDiagnostic and Statistical Manual (fourth edition, text revision) criteria, POTS patients did not have a higher incidence of major depressive disorder, anxiety disorders, or substance abuse than the general population."

Alex

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I was just reading that and found it interesting. Something I'm confused by talking about hyper pots

"In a small subgroup of patients, the primary underlying problem seems to be excessive sympathetic discharge. These patients often have extremely high levels of upright plasma norepinephrine (>1000 pg/mL and occasionally >2000 pg/mL, with an upper limit of normal of 475 pg/mL in our clinical laboratory"

It's tale about the high norepinephrine 1000 + upright and then it's says and upper limit of normal in clinical lab 475? Is that a typo?

Oh wait never mind, my brain is off sorry, they are saying a normal person standing nor epi shouldn't be above 475? Is that correct.

Weird, no one is really believing when I say I have hyper pots and my seated norepinephrine first thing in the am was over 500. Sheesh!

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I notice that the Vandy group rarely mentions Ehlers Danlos syndrome in their articles, which is kind of a bummer.

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Crow, actually he did he called it hypermobility syndrome. That name is being used more often these days for the eds type 3.

Thanks alex, it is good to see Raj, has moved from his primary salt loading theory, and is being more inclusive of other possibilities. Most notably stating that pots is often a result of other illness and that the illness should be pursued and treated, first. Then go to treatments to treat symptoms.

I so agree with that. I have an immune deficiency and autoimmunity and treating them has improved the inflammation thus improving symptoms in me. I'm not cured or full recovered but I have moved in the right direction. If I stop treating my primary cause though I would slide backwards.

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Another article I found very helpful.

This is pathetic but we happen to be out of printer paper at the moment.

If I can get some in time I'm going to take a copy of this article printed out for my neuropsychologist appt tomorrow,

I need to get her on board with POTS and help her understand why I am stimulated the way I am by my sympathetic nervous system.

It is very physical and not psychologically based.

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Guest Alex

Lieze,

you can try to do what I did and save some trees in the process :) - I burned a disk with some articles I thought are good and gave it to my dr, or you can load the articles on a USB stick and share them with your neuro dr (you know better if this is a valid approach for your situation); my dr was OK with it.

Regardless though, good luck with your appointment tomorrow.

Alex

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OK, first of all- love the article! I will be sending this to my Dr.

Question: in the "Upright Posture" section, he says: "Patients can present with orthostatic hypotension (seen in autonomic nervous system failure) or with orthostatic tachycardia (seen in POTS)."

I have presented with both POTS and OH...can someone clarify what he means by "ANS failure"?? I haven't heard this phrase and it sounds scary.

I had sudden onset last Feb, and still no luck finding underlying causes/conditions/disease. I have a positive ANA, plus GI problems currently being linked to positive tests for SIBO and fructose malabsorption (which could be causing each other, or caused by gastroparesis...or something else).

Question: What's the deal with abnormal sudomotor function? I definitely sweat, but when I had autonomic testing, it showed "sudomotor reflex absent in lower extremities"...and I've never been able to figure out what that means in relation to POTS...what type does this suggest, or what conditions does it suggest? Would this be "neuropathic pots"? Anyone know any good articles about this?

Question: (sort of silly) Does anyone know how to pronounce Dr. Raj? Is it "Rajjj" with a hard J, or "Ray" with a silent J, or something else? I will probably be talking about this article (lol) and want to pronounce it correctly!

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POTS patients often have preserved vagal function (as reflected by their sinus arrhythmia ratio in response to deep breathing) and a vigorous pressor response to the Valsalva maneuver,

I get this!! brill, more and more research I like!

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Ahhh....nice to see some good, quality controlled studies/articles being put in print....especially after the disappointing one from another well known group earlier this week!!! I love that this article addresses many issues, including quality of life issues, in a thorough and concise manner. It's a great overview for any physician working with patients with various forms of dysautonomia.

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I read this article again and I really appreciated the fact that it mentioned the different types of POTS. I hope our doctors are going to become more open minded about this condition. After my son was diagnosed with POTS, he was sent to a short term inpatient hospital for physical therapy. He only stayed a week but the funny part was the comment made by the attending physician. He said " I don't understand POTS at all. I will call your cardiologist and tell him not to send anymore POTS patients. Your son is mentally stable and does not need to come back here because he does not have an psychological disorder that is causing POTS. POTS is not an anxiety disorder." My husband and I were so glad to hear these words of wisdom.

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Question: (sort of silly) Does anyone know how to pronounce Dr. Raj? Is it "Rajjj" with a hard J, or "Ray" with a silent J, or something else? I will probably be talking about this article (lol) and want to pronounce it correctly!

I believe it's "Rajj" as he's from India.

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