ramakentesh

Yes same here. One crash i even had dreaming while I was still awake and all these really strange sleep symptoms. Strange illness for sure.

Had POTS since 2003 and had several periods of almost complete remission, periods where i was complete cactus and unable to drive, work or do much, crashes that have changed nearly every time they have occured with quite different presenting symptoms. Its pretty darn weird. For about 12 years I did very well on Midodrine even in my dodgy periods when I swapped to med authorised psuedoephedrine.

I read some of the review articles from POTS physicians in the UK and they are pretty strange at times. Id actually doubt a physician in the UK would prescribe either of these meds but the later is super expensive. Phenylephrine - the alpha 1 agonist was found to activate the alpha 1 receptor subtype (i think maybe Alpha 1b) which was the most common in the splanchnic/stomach venous reservoir however that area also relies on postganglionic alpha 2s which are pressor.

Just thought id dro by and say i recently had an episode of what they think was optic neuritis. Not sure if its POTS related or something else but the human body does weird things (in my case anyway!)

No I did not have success. In those days I couldnt get any meds at all from memory.

This is an interesting thread because the labile wings can go both ways. All of my life my BP was standard 120/90 - got POTS and it stayed that way with HRs going up to 140ish. Then I had a crash in 2012 (my third) where my average BP on standing was 90/60 with HR as high as 158 after years of sitting at 120/90. I had one BP reading of 53/36! A decade later after going very well on Midodrine I had another crash where my body completely over reacted and was throwing up outrageous BPs for two weeks of 190/110 and 180/110 for no apparent reason requiring I swap from my normal meds to clonidine and a beta blocker. Every time Id feel poorly instead of feeling dizzy id feel tense and trembly. Now days I appear to be in a mixed state where a crash will start with High BP and Ill take clonidine and five seconds later im dizzy as and 120/90 HR 140 decend. It is a confusing beast even after 20 years.

Yeah 180 is very high.

This was conducted now decades ago unfortunately. Its easy to get small fiber neuropathy testing in Australia but not much else.

Im just chuffed that people know about Novak's work. Stewart and Medow claimed that the only med that helped their cohort of low flow POTS patients with resting vasoconstriction and orthostatic hypertension was Losartan. My version of POTS seems to involve both prominent venous pooling (and thus pulse pressure narrowing) yet often an overshoot sometimes significantly high late in the day that ive been taking the edge off with clonidine and trying to cut down on coffee which i know isnt helpful ultimately.

I started florinef in 2012 and initially it was quite helpful. Over time I cant really tell if its doing anything but if I wean off I pay so in order to function I havent rocked the boat.

Success with clonidine alone relies on a patient having constant hyperadrenergic symptoms or fluctuation. If you are also prone to symptoms of OI from impaired venous return (which is the more common mechanism in many POTS) clonidine alone may make that symptom worse while also reducing the high spikes. There was an interesting recent study where a patient with post COVID baroreflex failure was given a pharm treatment protocol of large doses (0.3) of clonidine every six hours to stop the large spikes in arterial BP caused by excessive central outflow and low dose Droxidopa (L-Dops) to create a steady state of normotensive blood pressure so that their OI, dizziness and weakness were treated to an extent via increased peripheral sympathetic transduction. They termed this approach the 'autonomic clamp'. Clonidine alone for me in the mornings makes me feel appalling, whereas after about 3pm in the afternoon it feels calming and has no side effects. However it appears over time I quickly became tolerant to its BP suppressing effects. In my experience in the morning I need a antihypotensive to function, think and walk around and then towards the end of the day I was getting random surges in BP that clonidine was addressing to an extent although it appears other meds may work better. Its never an easy answer often with these conditions.

12 years now and counting, have yet to grow a second head so all good.

This happened to me, its like the movement sloshes my brain around so much that it causes a half vestibular half mini presyncope feeling. It lessened after a while but not much helped it, POTS meds barely touched it, caffeine seemed to help a little

At the moment its very high and I think this issue might relate to that.

I have noticed it seems potentially related to adrenergic surges as I am always having them significantly when it happens.