ramakentesh

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.

15 hours ago, Pistol said:

@ramakentesh are you on any new meds? I had the same happening to me from Clonidine and another med. Stopping the med fixed the problem for me. 

Thanks im on midodrine and beta blockers, I was on clonidine for a while but I gave it a rest due to increased fatigue.

Hi all - one of the new and very strange symptoms im getting at the moment is this feeling where as soon as I dose I fall straight into an utterly bizarre dream with random things going on or my leg will twitch and ill jolt wide awake. This goes all night and is accompanied by continual adrenalin surges. Anyone relate? Thanks

Yeah that sounds very similar to what i experience.

Sounds horrid. Sorry you are experiencing that.

You noticed any itching with the SFN? That and not being able to tell cold from hot on my feet were the reasons I got that biopsy done. I was positive but years later i was negative and POTS was the same so work that out

I thought about this for OCD that I acquired during the pandemic to a degree but yeah unfortunately with the POTS brain who knows what it might do - might go great, might be a two month crash. 

Yes there does seem to be a connection - what neurological symptoms do you think are being caused by APS?

My POTS over the years has literally come and gone at the drop of a hat sometimes - once i drank a lemonade in a crash and immediately felt fantastic. I bought lots more of that lemonade but sadly it never happened again

Interestingly after ten years of having what i would describe loosely as 'zombie POTS' where i just felt terrible OI and dizziness, fatigue etc which responded quite well to midodrine and florinef, last year my POTS did a complete 180 degrees and hit me with the most intense hyperadrenergia ive ever experienced in 18 years of POTS on and off. It went on for 6 and then 15 days of solid daily BPs of 180/110 and HRs of 140 and it was utterly horrendous. 

I was climbing the walls and actually felt like I was mentally losing it from the constant feeling of panic. And I have absolutely no idea why it went that way after over a decade of a fairly stable presentation with relapses and remissions. 

Pretty much threw out all of the past research I had read about the causes of POTS - made me start to think it may be more of a spectrum or something; or perhaps sometimes it just swings the other way for what ever reason. 

So now Im on clonidine and its been very helpful for me although it promotes OI but I kind of prefer dizziness to feeling so wired I cannot sleep and startle all day at birds etc.

Sorry to hear its come back but it does seem to have a habit of doing that during periods of change or hormonal fluctuations.

Jealous of 10 year remissions however

On 3/22/2022 at 9:19 PM, Pistol said:

I have hyperPOTS and what happens is that upon a sudden drop in BP the SNS overcompensates and dumps out adrenaline, which in turn causes excessive vasoconstriction and the BP and HR go up significantly. This sudden stop of cerebral circulation causes seizures in me. I also have NCS, which means the SNS does NOT kick in and my HR and BP plummet suddenly, causing a faint. 

@RecipeForDisaster I had a terrible experience with clonidine. I only took it for about a week but was highly sedated the whole time and on day 5 developed rebound hypertension during the night - I felt like I was dying. It is helpful for many people but beware of the side effects

The excessive sympathetic response to standing hypothesis is interesting because vesicles in sympathetic synapses rely heavily on reuptake for norepinephrine stores - meaning if there was a lack of transporter the vesicle would be completely depleted of norepinphrine without an increase to tyrosine hydroxylase. This would potentially result in hypotension.

This is further evidenced by NET inhibition in heathy people which increases standing heart rate, impaited baroreflex sensitivity but not a hyperadrenergic state.

The angiotensin ii low flow crowd did have a true hyperadrenergic response yet vasodilators made them feel worse.

I really beleive that proper hyperadrenergic POTS - if if is more than a presentation - is probably mediated by central processes

Ive had small fiber neuropathy diagnosed twice. Other than itching and not being able to tell temperature in my feet luckily i had no other symptoms. 

Adrenalin surges are a common feature of POTS - not just specific to presentations like 'hyper' POTS.

A decade ago a neurologist suggested that they were caused by reflex activation of beta receptors via release of epinephrine in an ineffectual attempt to regulate circulatory control but now days Im not so sure as a recent episode I had gave me outrageous blood pressures including one measurement of 210/120 lying down. Since arterial blood pressure is controlled more by the effects of norepinephrine at alpha 1 adrenergic receptors and my HR was elevated but not as pronounced I realised it could really only be explained by an excessive vasocontrictive response. 

This is despite the fact that I have relied on midodrine for 12 years normally to function.

My neurologist suggested low dose clonidine (1/4 or 1/2 tab) and the results normalised my BP and calmed my mind/stopped the hyperadrenergic feeling. To my surprise it has not really worsened orthostatic intolerance at all athough larger doses can make me lethargic. 

I think from my experience with POTS it can change over time and isnt a static situation. 

heat in the stomach my cause reflex vasodilation of the surrounding splanchnic circulation.

You may want to try a neurologist rather than a cardiologist.

Midodrine for me actually LOWERS my standing BP presumably buy increasing venous return and stopping the rest of my symptoms. 

I found fairly small amounts helpful - larger could push towards migraine.

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.

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

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.

C

9 hours ago, Pistol said:

I don't have pseudo seizures, I have autonomic seizures - also called hypoxic seizures. They are caused by cerebral hypoxia from excessive vasoconstriction, as shown on longterm EEG with telemetry. And no - I RARELY ever have them anymore, thanks to IV fluids!!!!! 

Can relate

Narrowing pulse pressure is a measure of reduced stroke volume and venous return

Thanks for info.