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Everything posted by ramakentesh
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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
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SFN not a good enough diagnosis to get IVIG ?
ramakentesh replied to RecipeForDisaster's topic in Dysautonomia Discussion
Yeah that sounds very similar to what i experience. -
Anybody else have pots and antiphospholipid syndrome
ramakentesh replied to Nin's topic in Dysautonomia Discussion
Sounds horrid. Sorry you are experiencing that. -
SFN not a good enough diagnosis to get IVIG ?
ramakentesh replied to RecipeForDisaster's topic in Dysautonomia Discussion
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 -
Anybody else have pots and antiphospholipid syndrome
ramakentesh replied to Nin's topic in Dysautonomia Discussion
Yes there does seem to be a connection - what neurological symptoms do you think are being caused by APS? -
Has Anyone Had a Sudden Event Reset Their ANS?
ramakentesh replied to MikeO's topic in Dysautonomia Discussion
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.
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Menopause and Severe Dysautonomia Relapse
ramakentesh replied to brethor9's topic in Dysautonomia Discussion
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 -
Hyperadrenergic POTS (hyperPOTS) An overview of a POTS subtype
ramakentesh commented on Pistol's article in POTS
All etiologies of POTS can display 'hyperadrenergic' features. Neuropathic POTS patients can display these features. POTS patients with low-flow POTS and elevated Angiotensin II would meet the definition of Hyperadrenergic POTS. The patients in the adrenergic autoantibody studies with the highest titers for alpha receptor antibodies had hyperadrenergic features. The same amount of 'Hyperadrenergic' as 'neuropathic' POTS patients had small fiber neuropathy suggesting the possibility of a common primary etiology. This is why several docs including Dr Raj arent super keen on people 'subtyping' a group of disorders with unclear etiologies. All of this suggests that there is no fixed medical consensus on the etiology of 'Hyperadrenergic POTS' as a distinct diagnosis or pathology and that it is a presentation. Lastly - as an aside, Norepinephrine and adrenalin are different. This is important because hyperadrenergic POTS patients generally have elevated norepinephrine (which is preferential for alpha 1 and alpha 2 adrenergic receptors) rather than epinephrine (which is preferential for beta 1 and beta 2 adrenergic receptors). -
Adrenaline at Night. Clonadine in the UK?
ramakentesh replied to m1279's topic in Dysautonomia Discussion
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 -
Diagnosed with Small Fiber Neuropathy.
ramakentesh replied to CallieAndToby's topic in Dysautonomia Discussion
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. -
Adrenaline at Night. Clonadine in the UK?
ramakentesh replied to m1279's topic in Dysautonomia Discussion
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.
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You may want to try a neurologist rather than a cardiologist.
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Midodrine for me actually LOWERS my standing BP presumably buy increasing venous return and stopping the rest of my symptoms.
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I found fairly small amounts helpful - larger could push towards migraine.
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Is fludrocortisone/florinef a brutal medication to take?
ramakentesh replied to Nin's topic in Dysautonomia Discussion
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
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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.
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C Can relate
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Very low (narrow) pulse pressure
ramakentesh replied to Elizaangelica's topic in Dysautonomia Discussion
Narrowing pulse pressure is a measure of reduced stroke volume and venous return