Listen now (53 mins) | A pioneer in dysautonomia with pearls on approaching patients with Long Covid and Postural Orthostatic Tachycardia Syndrome (POTS)
Wow! This is truly exciting! It also makes me wonder how many physicians are quietly picking up on this research and using it “under the table” at their own expense, or at least hiding it from the insurance companies. I’ve had what was called non-diabetic peripheral neuropathy for well over 20 years. I was told it was either genetic or caused by a statin drug, patted on the head and sent on my way. When I moved too Arkansas, I saw a timid neurologist for ET and he checked me head to toe with very simple instruments—-passing a vial under my nose & asking me identify the odor, a tuning fork, things like that. He found the neuropathy without me saying a word, and scheduled me for a punch biopsy. This was 15 years ago. He said it was experimental & insurance probably wouldn’t pay for it. The results were that the small nerve fibers dramatically decreased in the punches as they approached my feet. We never got further for treatment because he disappeared from our provider list. Shortly after he left the state. Also, my daughter saw a low-profile physician in Illinois & described her visit, which sounded as if this PCP was testing for POTS. Now I know she was. I believe there are many like these two I’ve mentioned who remain silent, shielding the patients from insurance companies. Gotta love these physicians.
GLP-1. Yes! I was dealing with Long Covid, but a month after taking Ozempic I started feeling better. My most recent blood work came back with everything smack dab in the middle of normal range; a first for me, especially my lymphocytes. I feel 80% recovered and thought I got lucky. You bet I did! So much fantastic research going on from dedicated physicians working together. My gratitude is overwhelming. Thank you Dr. Topol and Dr. Blitshteyn.
Off to watch this on YouTube and pass it along to others.
Hi Dr. T: Thanks for highlighting a "backwater" of the medical ecosystem in interviewing Dr. Blitshteyn - and I appreciate of your insights, Dr. B! The complex conundrum of variable root causes, triggers, symptoms, and possible treatments/palliatives make this "spectrum" a challenge for healthcare professionals to keep sustained attention and effort on, vs. minimize/dismiss as "fascinomas". That the majority of cases in have been in women (at least prior to the auto-immune "post-pandemic pandemic" affecting more males) is an important gender equity tale re: research to date.
Two brief bits of input from me: I have the some significant dysautonomia myself - post-radiation tx damage to my cervical spinal cord as they were nailing a chondrosarcoma. It truly takes a real bite out of life and my psychiatric practice, however grateful I am for the remission in my cancer. For me, the cocktail to manage the variety of wax/waning difficulties include leaning on alpha-adrenergic modifiers as better tolerated than betas (my own trial and error, the idea from use of them in PTSD-related nightmares/flashbacks). Clonidine in the weekly patch form has been a godsend. Liberal (daily) use of loperamide GI histamine blockers to stabilize the wayward GI sx that are less reported in this spectrum helps.
Non-Rx-wise, I've learned by trial and error to micromanage effort and energy - no more full practice days, power naps in mid-day; careful/incremental stamina-building (including careful weight training) - with the understanding that a quark over the line in terms of excessive energy expenditure often means a day or two of total wipeout in fatigue, pain, inflammatory sx (and disappointment). Not an easy illness for the ambitious.
Also: it's important not to discount the primary and secondary impact on mood. The quick "cranking on" of a threat response to postural hypotension (let alone fall risks, dizziness, blurry vision) generates a panic-disorder-like feel - all apart from the conscious psyche's suffering in wrestling with an unpredictable daily life. So SSRI's are worth consideration as part of the "cocktail"; as is psychotherapy and meditation.
Thanks again for shining a light - I hope this additional input helps others.
This is a fantastic interview and presentation of a nebulous topic, and I especially appreciate the clinical realism in terms of how hard it is to make this or any other diagnosis of exclusion… much less feel in command of off-label meds that may or may not help.
Inspired me to learn more, try harder, and be more open to trying these medications as a primary instead of just “referring for a tilt table test.”
Pleas consider posting an addendum of any references Dr. Blitshteyn might recommend for fellow clinicians (especially primaries like me). Besides UpToDate (which I subscribe to) these quick references from Hopkins and BMJ were decent reads tonight:
Wow! This is truly exciting! It also makes me wonder how many physicians are quietly picking up on this research and using it “under the table” at their own expense, or at least hiding it from the insurance companies. I’ve had what was called non-diabetic peripheral neuropathy for well over 20 years. I was told it was either genetic or caused by a statin drug, patted on the head and sent on my way. When I moved too Arkansas, I saw a timid neurologist for ET and he checked me head to toe with very simple instruments—-passing a vial under my nose & asking me identify the odor, a tuning fork, things like that. He found the neuropathy without me saying a word, and scheduled me for a punch biopsy. This was 15 years ago. He said it was experimental & insurance probably wouldn’t pay for it. The results were that the small nerve fibers dramatically decreased in the punches as they approached my feet. We never got further for treatment because he disappeared from our provider list. Shortly after he left the state. Also, my daughter saw a low-profile physician in Illinois & described her visit, which sounded as if this PCP was testing for POTS. Now I know she was. I believe there are many like these two I’ve mentioned who remain silent, shielding the patients from insurance companies. Gotta love these physicians.
GLP-1. Yes! I was dealing with Long Covid, but a month after taking Ozempic I started feeling better. My most recent blood work came back with everything smack dab in the middle of normal range; a first for me, especially my lymphocytes. I feel 80% recovered and thought I got lucky. You bet I did! So much fantastic research going on from dedicated physicians working together. My gratitude is overwhelming. Thank you Dr. Topol and Dr. Blitshteyn.
Off to watch this on YouTube and pass it along to others.
Hi Dr. T: Thanks for highlighting a "backwater" of the medical ecosystem in interviewing Dr. Blitshteyn - and I appreciate of your insights, Dr. B! The complex conundrum of variable root causes, triggers, symptoms, and possible treatments/palliatives make this "spectrum" a challenge for healthcare professionals to keep sustained attention and effort on, vs. minimize/dismiss as "fascinomas". That the majority of cases in have been in women (at least prior to the auto-immune "post-pandemic pandemic" affecting more males) is an important gender equity tale re: research to date.
Two brief bits of input from me: I have the some significant dysautonomia myself - post-radiation tx damage to my cervical spinal cord as they were nailing a chondrosarcoma. It truly takes a real bite out of life and my psychiatric practice, however grateful I am for the remission in my cancer. For me, the cocktail to manage the variety of wax/waning difficulties include leaning on alpha-adrenergic modifiers as better tolerated than betas (my own trial and error, the idea from use of them in PTSD-related nightmares/flashbacks). Clonidine in the weekly patch form has been a godsend. Liberal (daily) use of loperamide GI histamine blockers to stabilize the wayward GI sx that are less reported in this spectrum helps.
Non-Rx-wise, I've learned by trial and error to micromanage effort and energy - no more full practice days, power naps in mid-day; careful/incremental stamina-building (including careful weight training) - with the understanding that a quark over the line in terms of excessive energy expenditure often means a day or two of total wipeout in fatigue, pain, inflammatory sx (and disappointment). Not an easy illness for the ambitious.
Also: it's important not to discount the primary and secondary impact on mood. The quick "cranking on" of a threat response to postural hypotension (let alone fall risks, dizziness, blurry vision) generates a panic-disorder-like feel - all apart from the conscious psyche's suffering in wrestling with an unpredictable daily life. So SSRI's are worth consideration as part of the "cocktail"; as is psychotherapy and meditation.
Thanks again for shining a light - I hope this additional input helps others.
Greg Sazima, MD
This is a fantastic interview and presentation of a nebulous topic, and I especially appreciate the clinical realism in terms of how hard it is to make this or any other diagnosis of exclusion… much less feel in command of off-label meds that may or may not help.
Inspired me to learn more, try harder, and be more open to trying these medications as a primary instead of just “referring for a tilt table test.”
Pleas consider posting an addendum of any references Dr. Blitshteyn might recommend for fellow clinicians (especially primaries like me). Besides UpToDate (which I subscribe to) these quick references from Hopkins and BMJ were decent reads tonight:
https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots
Point of care testing:
https://ep.bmj.com/content/edpract/early/2023/04/20/archdischild-2022-324950/DC1/embed/inline-supplementary-material-1.pdf?download=true