ramakentesh

Actually yes - if the people at the Baker Institute are correct with their finding in that POTS is caused by impaired norepinephrine reuptake from a hypermethylated NET gene promoter, they have found that certain medications cause methylation of this gene - Reaccutane being one that they have found that causes this - and in theory triggers POTS

sorry Finnurik - the study doesnt suggest that all POTS patients have this as the cause - just all the patients in the study. I would find it hard to believe that it could be found in all patients tested who happened to live in Melbourne Australia and that it wasnt atleast somewhat representative of otehr POTS patients. Im sure once you read the study you may feel less sceptical. Since this is probably one of the first studies of POTS that has provided a significant causal factor that has been confirmed using two seperate tests, I think in a year's time the studies significance will be demonstrated.

nj

When i go on holiday I always seem to imrpove quite dramatically for some reason - one holiday was a 10 boating fishing trip and I was fine teh whole time only to get sick when i come back home

Im going through a shocker of a period - you know the type - too busy trying not to faint when i walking along that I cant even comprehend what the guy next to me is saying, etc. I was thinking that maybe the usual alpha treatments like midodrine, while working ok for the short term, arent really cutting it. Has anyone tried procrit - and if so what were the sideeffects if any? How do you make sure there are no clots and all that??

Yeah at the ER i was asked how I caught POTS - since it was a bone disease caused by TB - atleast they didnt make the drug assumption - although I was half way to fainting and probably looked like i was with my eyes unable to focus and feeling so light-headed - ah the memories... As for DT - well that might make Delirium Tremens assumptions - and they way i tremble sometimes with POTS they might think im coming off a bender!

looking back i can see some minor symptoms for some time, but they werent any concern until after a cold in 2003 I was doing some heavy fitness training and nearly fainted. After this I started getting attacks of adrenalin surges and started feeling dizzy all the time - within a week i was walking around like a zombie feeling like i was on another planet every time i stood and nearly passing out all the time. It gradually improved so far that I was almost better until my recent return from overseas and Im in a major pot-hole - probably the worst ive been so far. its important to note that the current theory on the cause of POTS in the majority of patients in Australia - if not the world if these figures translate - is that exposure to a chemical or more probably a viral infection methylates the NET gene promoter basically turning the gene off - causing POTS.

You know I dont even tell people I have POTS - I use easier terms like 'low blood volume' 'orthostatic hypotension' or 'Orthostatic tachycardia' - because POTS sounds pretty weird. When I told my sister she actually laughed at its name. Im hoping that if some recent developments are correct and they do truly work out the cause(s) of POTS that maybe they can change its names to something that sounds a little more serious or real... But im sure others out there must agree - pots sounds pretty strange to the average Joe who has never heard of it. Hope no one gets offended by this post... :)

yeah I know that guy - he's a real strange one. I often get it at night or late in the day - like a weird pressure behind the area in between my eyes or behind my nose or something. Its odd. So are many oif the symptoms.

if only i could handle caffiene Go get yourself some licorice and see if that helps.

Im sorry but I dont see the connection between PTSD and dysautomomia - unless of course your suggesting that dysautonomia is caused or is a symptom by a psychological disorder - and clearly it is not.

yeah it must be aussie beers It really clears my brain fog after just a few sips. Imagine that - I can drink beer as a medicine - crazy!

SSRIs actually depress norepinephrine uptake so the fact taht they improve some patients with pots seems weird - i guess they improve the general operation of the autonomic nervous system through an increase in serotonin? Anyway - beta blockers work for me for the adrenalin rushs Licorice extract is great but too much can cause a migraine and lastly DHE is similar to midodrine but has less sideeffects (its a peripheral vasoconstrictor). Things that dont work for me - hands down florinef By the way - what is GERD?

i get floaters as well - weird.

Im aware that alcohol is a vasodilator in smaller dosages and is also a strong diuretic and drains your body of liquid - both very bad for POTS patients - that's why I was wondering if any one else had experience this. But alcohol is also a strong Beta-adrenagenic suppressor - similar to beta blockers - perhaps this could be why? It doesnt make any sense but Im quite sure it works. When my POTS initially arrived I also couldnt handle it and would often get a severe autonomic serge for the next few days after consumption. But now all i seem to get is the beta-adrenegic benefits. Whereas even a sip of coffee and Im so dizzy i cant stand... If indeed primary POTS was caused by depressed reuptake of norepinephrine causing over stimulation of the autonomic nervous system and dilation of arteries (causing reduced blood flow to the brain) then all in all it may suppress the beta-adrenagenic system and perhaps lesson pots - but ofcourse the hangover is actually caused by a stimulation of the nervous system in withdrawl - so it would have the opposite effect. Weird...;

Yeah i get that before the 'storm' sets in and the adrenalin stars pumping. Its weird - for me I usually have a really good day before one of these - I feel great, then start to feel tired and then cold - i get goose bumps and then I start to feel almost jumpy and feel apprehension - then the tremors start and the rest... I have no idea why this occurs.

I must be the only POTS dude that does well in the heat - im jealous! Although not of your symptoms - poor thing!

Basically most of those are cardinal signs of POTS - although the term Vasodepression I assume referres to a reduction in blood flow to the brain - something that recent studies demonstrate causes the syncope and dizziness. Did you get an ultrasound on your carotid arteries in the neck lying down and then at various tilts on the table?

Ive recently noticed that if i drink just one or two beers every now and then I generally feel much better for a couple of days. Would this because of the beta-adrenagenic effects of alcohol?

Many doctors look at POTS as a seperate problem to orthostatic hypotension - most of the studies indicate that the blood pressure changes associated with POTS do not actually cause the symptoms - it is the reduced blood flow to the brain caused by excessive venous pooling

Licorice mimics the bodies natural hormone that regulates blood volume - effectively making your body increase blood volume and thus lessons presynocope/dizziness and other symptoms. If i take too much i feel quite unwell and get migraines, but low doses give me dramatic improvements. Works better than all the medication ive tried other than DHergotamine which can make me a little sleepy. Apparently it increase blood volume so readily that every year after the melborune show lots of kids are hospitalised with swollen feet and fluid retention from eating lots of licorice.

There seems to be a bit of confusion about POTS and blood pressure. Professor Esler and the people at the Baker Institute as well as seperate studies at the Vanderbelt Institute could find no significant drop in blood pressure that would account for the syncope or faint of the majority of POTS patients they tested. In the words of the people at the Baker Institute they believe its actually caused not by blood pressure drops but by sudden reduction in blood flow and volume to the brain and vasospasm - both a product of excessive autonomic nervous system reactions to orthostatic stress.

Most doctors and most of the literature suggests that POTS isnt progressive. Certainly there are exceptions to this story but for most people who develope POTS fairly abruptly they are likley to be worse with the onse tof the illness and then waxing and waning until eventually progressing to an improvement. Since i travel a lot for work - i find when i move abroad or interstate my symptoms improve dramatically, but the longer Im away the worse they will be when i get back home. I guess if the new study my Professor Esler et al. is correct about the cause behind many POTS patients then that would suggest that as half the POTS patients tested already had 100% methylation of the NET gene promoter, they couldnt get any worse. But then again this doesnt explain why this mutation occurs or why the symptoms to wax and wane. I didnt improve for atleast a year - but when i did it was pretty dramatic - start gobbbling licorice is my advice.

Over activity of the sympathetic nervous system would make it hard to sleep. Its like being scared out your wits if your a normal person and then trying to sleep when the adrenalin and noradrenalin are pulsing through your body. it isnt gonna happen easily. I usually sleep because im so exhausted from ahving to work dizzy all day

Anxiety is listed in nearly all studies and discussions of POTS as a symptom. It makes since as previously stated that most if not all of the symptoms of POTS are caused by an overactivity or inappropriate response of the sympathetic nervous system - too much adrenalin/noradrenalin= anxiety among other things (irritability, not to mention pots symptoms) Generalised overactivity of the sympathetic nervous system - even minor - such as in low grade hyperthyroidism will cause anxiety.