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Everything posted by ramakentesh

  1. Interestingly hyper pots patients have the lowest blood volume according to a paper by Stewart and Medow (low flow variant) and a more recent one from Vanderbilt that showed salt loading in H POTS reduced norepinephrine levels more in H POTS than other forms. Dr Raj suggests that many POTS patients have characteristics of more than one presentation so perhaps its a spectrum rather than separate etiologies? Florinef made me jittery for 3 days then i felt amazing. More recently after 11 years and my first hyperadrenergic episode in nearly two decades i tapered hoping my weird vision might improve but it didnt.
  2. My flares are mostly just tachycardia amd a minor increase in standing bp that normalised after i started Florinef amd Midodrine Recently hoeever I had an intense hyperadrenergic crash with bps regularly sitting at 180/120 hr 138, etc amd my neuro wired me clonidine. I took a tiny fragment during an 8 hour adrenalin surge and my bp dropped to 79/57 within 10 minutes. Weirdly i felt no more dizzy, just less wired. Pots us strange
  3. Ive had this on and off for 17 years. Its weird and worse when i (used to) drink alcohol. Now in a very hyper flare i can see it all day long and its distorting my peripheral vision.
  4. Narrowing pulse pressure is a measure of reduced stroke volume and venous return
  5. Interesting that a calcium channel blocker helps. Any initial increase in dizziness or fatigue? Thanks
  6. Yes the adrenalin surges. Hadnt had them for a decade until this recent flare when they went bezerk. Four nights of 8 hours solid. Not the best time ive had. Beta blockers didnt really help. Valarian out of desperation and taurine maybe helped a little.
  7. When i first got sick anything that made me stress at all triggered insane hr increases
  8. The science however on etiologies and subtype-specific pathophysiologies is still not settled.
  9. These were catagories designed by Stewart and Medow to subtype based on cutaneous blood flow. The low flow subtype were almost exclusively female, generally had low body mass index, low blood volume and resting vasoconstriction but felt profoundly worse when given IV Vitamin C to improve flow-mediated dilation. These were asdociated with excessive angiotensin II in serum which more recently appears tied in some to autoantibodies agonising Angiotensin ii receptor type 1 (AT1-r) - MAS aabs suppress renin aldosterone which is believed to partially explain the volume deficits. High flow have excessive blood flow and microvascular filtration in hands and feet which were warm to touch. Normal flow was the most common and pooled exclusively in the stomach venous circulation. The resulys suggest that all three forms had pooling in one region.
  10. A lot of what you ar describing im experiencing in my latest flare (never had such severe brain fog in 17 years)
  11. Who are you seeing now days? If u need to chat about it pop me a pm.
  12. Sorry you are having a bad flare. Im in the same boat sadly amd with new symptoms to keep me guessing haha
  13. Lately my brain fog has been so bad amd combined with the pandemic ive developed kind of ocd symptoms and was contemplating a low dose SSRI just to calm down my stress levels and compulsions.
  14. Old post but new symptom in new flare and im getting exactly this: Three days during adrenalin surges as soon as id fall asleep id instantly fall into this hypnagogic state where an image or word would flash into my mind's eye amd jolt me awake. So utterly bizarre i was convinced i was having a seizure until a pots friend said they also experienced this.
  15. Cooked tomatoes make my pots worse always
  16. Fatigue is the most common reported symptom in POTS according to the recent Canadian Consensus Statement. Million dollar question is how to treat it. B12 is a good suggestion. Mestinon helps some mildly as does volume expansion. Ive done ok with midodrine and on very bad days pseudoephedrine. A supplement called NAC can also be helpful. Some friends are prescribed modafinil or stronger but these may augment tachycardia
  17. All POTS by definition is a hyperadrenergic state. The concept of hyper pots being a separate entity with unique etiologies is challenged by the fact that as many 'hyperadrenergic POTS' patients as neuropathic POTS patients have patchy small fiber neuropathy. I have neuropathic pots with hyperadrenergic features such as orthostatic hypertension (which paradoxically improves when i take midodrine). Hyperadrenergic POTS - according to Vanderbilt - is a description of clinical features and not a diagnosis
  18. Pots seems to involve - in some cases - excessive venodilation with compensatory tachycardia although NET deficiency can also cause excessive tachycardia and blunted sympathetic vasoconstriction Histamine is another option but its effrcts are mainly at the microvascular level.
  19. Old school antihistamines do have affinity for mainly muscarinic receptors where they might decrease the effects of acetylcholinesterase inhibition to a degree. Clonidine acts mainly on alpha 2a receptors in the brain to suppress sympathetic outflow. Unless Latuda is an alpha 2 antagonist i doubt it would interact with clonidine. Does clonidine help your situation in a setting where licorice also does?
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