RichGotsPots

Rama- I get how NET def leads to NE high levels. If the commuter bus is 1 hour late there will be more passengers waiting on line to take it.. But how in the world can a NET def have normal NE levels when the came amount of people commute everyday. Is their NE away on vacation lol That would mean they actually have a low level to begin with.. Can you send me a link to the group that did the peripheral nerves NET study, I'd like to read it But seriously Dr. Grubb postulates that hyperPOTS patients can run high then shoot up and then crash. That's the balance you once mentioned..

Emma- I got as regular echo, then made them do an upright echo, just to check if my pulmonary pressure changed when standing. My insurance wouldnt cover a stress echo, but I dont know if it would find anything because they lie you back down after you exercise anyway and most issues happen while standing. Laying down is better than standing or walking for my breathlessness but by no means will it stop it or make it go away.. The only way I get breathless when I'm laying down is if I'm hot, dehydrated, eat too much or am stressed :-( I've had a High resolution CT scan, it doesn't show function it shows if there are large tumors (lung cancer- but not small cell lung cancer) or scarring from a number of things like fibrosis or from COPD and if you get it with contrast it shows if there is a clot. I didnt want to get the contrast in case i was allergic so I pushed them to give me a Perfusion lung scan which is a nuclear scan of the lung which also can show if there is clotting... Both of mine were good.. I want to get a standing MRI of my lung because MRI with contrast is suppose to show blood flow in the organs so it can tell if there is blood moving away from my lungs or heart when I stand...

And it doesn't surprise me that nearly half the people that took poll have never been tested. It's part of what irks me about how well the clinical community is handling and testing POTS patients. They are just experimenting with meds on us like guinea pigs without knowing is we specific problems first. In the link above Dr Grubb specifically says that the treatment for hyperadrenic POTS is completely different and salt loading doesnt help as much, same goes for some types of beta blockers...

True, acetycholine, is another neurotransmitter used by ANS. I wonder how many people have had the antibody titer for nic acetylcholine? Or better yet how many have heard of it if they haven't been to any of the major clinics... Maybe I'll poll this too Not sure what bias you are referring to in sample or on poll taking, since this poll is public you can see who polls what answer.. Also "on stimulation by acetylcholine, the suprarenal medulla releases epinephrine and norepinephrine" For anyone who is interested here is great new study on 3 POTS patients with "Autoimmune Autonomic Ganglionopathy With Reversible Cognitive Impairment" http://archneur.jamanetwork.com/article.aspx?volume=69&issue=4&page=461

Rama I read and why am I not surprised the research was done by your favorite POTS author But you can see from those studies that almost all severely ill groups have lower Glutathione levels, def dont think its a present day cure, but I hope someday researchers find some major Glutathione activators to aid the healing process in all illness..

Very surprising that some people's NE is way up but their E is normal...

So far I think it's far to say my poll is showing that 6 out of the 7 people who were tested were hyperPOTS. Obviously I'm hoping to get a much bigger response, perhaps I'm going to take off the question about the actual catecholamine levels because not everyone may have their results handy or in nmols... Maybe I ask as a 2nd question, if people get adrenaline rushes. I dont see how at catecholamine levels can be normal for any POTS person. Catecholamine levels are the chemicals of our ANS and since our ANS is dysfunctional how can our catecholamine levels not be?

This is from a Grubb report http://circ.ahajournals.org/content/117/21/2814.full "Patients with the hyperadrenergic form of POTS usually require therapy indefinitely"

Zinc is a great supplement that has helped with diarrhea. The WHO actual recommends its worldwide for the issue...

I've spoken to a few people who noticed the exact same thing. I also have this, especially at night or like today in bad weather. To be honest it would just be a guess at what is causing it.. Compression socks help a bunch... My guess is that is some kind of venous denervation which triggers catecholamines rise, then I become hypersensitive to outside stimuli and all the stimuli fatigues me, but just a guess...

I wish they had either a standing perfusion test or a standing CT scan, i think it would be able to tell.

Whey isn't a drug and it's not being prescribed by doctors its being studied by science labs but the main stream alternative doctors are the ones suggesting it among many other supplements. Apparently they test straight but glutathione but it doesnt help to add to our levels.. Supplementation Raising GSH levels through direct supplementation of glutathione is difficult. Research suggests that glutathione taken orally is not well absorbed across the gastrointestinal tract. In a study of acute oral administration of a very large dose (3 grams) of oral glutathione, Witschi and coworkers found "it is not possible to increase circulating glutathione to a clinically beneficial extent by the oral administration of a single dose of 3 g of glutathione."[25][26] However, it is possible to increase and maintain appropriate Glutathione levels by increasing the daily consumption of Cysteine-rich foods and/or supplements. Calcitriol, the active metabolite of vitamin D synthesized in the kidney, increases glutathione levels in the brain and appears to be a catalyst for glutathione production.[27] In addition, plasma and liver GSH concentrations can be raised by administration of certain supplements that serve as GSH precursors. N-acetylcysteine, commonly referred to as NAC, is the most bioavailable precursor of glutathione.[28] Other supplements, including S-adenosylmethionine (SAMe)[29][30][31] and whey protein[32][33][34][35][36][37] have also been shown to increase glutathione content within the cell. NAC is available both as a drug and as a generic supplement. Alpha lipoic acid has also been shown to restore intracellular glutathione.[38][39] Melatonin has been shown to stimulate a related enzyme, glutathione peroxidase,[40] and silymarin, an extract of the seeds of the milk thistle plant (Silybum marianum), has also demonstrated an ability to replenish glutathione levels in lab rats.[41][42] Glutathione is a tightly regulated intracellular constituent, and is limited in its production by negative feedback inhibition of its own synthesis through the enzyme gamma-glutamylcysteine synthetase, thus greatly minimizing any possibility of overdosage. Glutathione augmentation using precursors of glutathione synthesis or intravenous glutathione is a strategy developed to address states of glutathione deficiency, high oxidative stress, immune deficiency, and xenobiotic overload in which glutathione plays a part in the detoxification of the xenobiotic in question (especially through the hepatic route). Glutathione deficiency states include, but are not limited to, HIV/AIDS, chemical and infectious hepatitis, myalgic encephalomyelitis chronic fatigue syndrome ME / CFS,[43][44][45] prostate and other cancers, cataracts, Alzheimer's disease, Parkinson's disease, chronic obstructive pulmonary disease, asthma, radiation poisoning, malnutritive states, arduous physical stress, and aging, and has been associated with suboptimal immune response. Many clinical pathologies are associated with oxidative stress and are elaborated upon in numerous medical references.[18][46][47] Low glutathione is also strongly implicated in wasting and negative nitrogen balance,[48] as seen in cancer, AIDS, sepsis, trauma, burns and even athletic overtraining. Glutathione supplementation can oppose this process, and in AIDS, for example, result in improved survival rates.[49] However, studies in many of these conditions have not been able to differentiate between low glutathione as a result of acutely (as in septic patients) or chronically (as in HIV) increased oxidative stress, and increased pathology as a result ofpreexisting deficiencies. Schizophrenia and bipolar disorder are associated with lowered glutathione. Accruing data suggest that oxidative stress may be a factor underlying the pathophysiology of bipolar disorder (BD), major depressive disorder (MDD), and schizophrenia (SCZ). Glutathione (GSH) is the major free radical scavenger in the brain.[50] Diminished GSH levels elevate cellular vulnerability towards oxidative stress; characterized by accumulating reactive oxygen species. Replenishment of glutathione using N-acetyl cysteine has been shown to reduce symptoms of both disorders.[51]

Yes this is one type, http://en.wikipedia.org/wiki/Cardiac_syndrome_X http://en.wikipedia.org/wiki/Microangiopathy I emailed one of the leading cardiologist in this area and he emailed me back! He said the only way he diagnosis it is with a MRI exercise cardiac stress test and nothing else! Wow! I never ever heard of this test, but it sounds like to me I should be getting this done ASAP. Sounds to me like it could tell me if blood is augmenting away from my chest. But he says it cant tell the blood flow of the lungs, i dont know why Best, Rich

Dana, What chose do you think is missing, was it that I used Nmol? I didnt have time to include the conversion measurements as well. Here is a coverter is anyone needs it http://www.soc-bdr.org/rds/authors/unit_tables_conversions_and_genetic_dictionaries/e5196/index_en.html

Kim-I'm not adding the whey for protein I'm adding it because it is supposed to up are glutathione levels and that our body biggest defense.. Also I'm not vegan but everything in moderation. The okinawan study is a great book to read. Okinawans live the longest out of anyone and they dont get diseases or cancers at all eat traditional foods..

very weird! How do you differentiate btwn NE raised levels and NET def or are they the same? B/c if they are then clonidine doesnt sound like a good hyper pots treatment..

Juicing is only as good as what you juice. Part of the cleanse is to cut out sugars. Melons like water melon are the only fruits that are great for cleansing. I dont like to mix fruit with veggies.. I do mean green drinks with tomatoes and carrots for flavor. The slower the juicer the longer the nutrients will be preserved. If you are buying anything in the store chances are it dead of vitamins and nutrients..

oops i added, never tested to the second question

Btw Rama have you ever had your cathecholamine levels tested or done a Valsalva Maneuver? Just curious if you have denervation or are hyperadrenic..

I just read this study http://circ.ahajournals.org/content/82/6/2011.full.pdf Microvascular angina is basically chest pain without ischemia (thus without blockage of an artery) they diagnose it kind of by exclusion, but I read an interesting article that says it is also associated with breathlessness and this particular study notes they are investigating smooth muscle issues of the bronchi in association with it because they think they found smooth muscle issues in the artery of the arms of these patients.. I dont know if I go along with the studies theory but its results are they found more patients have brochi smooth muscle responses than the general population... I read they generally treat it with calcium channel blocker. hmmm.. those can cause constriction of the brochi smooth muscle, so I wonder what this research doc would prescribe and I wonder if this is what I have...

Hi, I hope I get many poll takers on this one. I suspect Hyperadrenic POT is more prevalent then I've read. I'm going to add a question to what meds helped the most... There are many posts on the subject but i couldnt find any polls...

Issie- what were your supins levels versus your orthostatic levels? If Rama is right then Mast cells or histamine levels might be affecting NE or E levels or vise versa, hmmmm... I wish we could know for sure if it is pooling. Have you ever tried a combo of midodrine and a antiadrenic BetaBlocker at the same time? Because what else stops pooling besides midodrine? Well octreotide does in the stomach but I polled an not many people took it on the forum to get conclusive results..

I've been through all of these test except the Barium. I didnt find them useful, but its good to get them done and cross them off your list to make sure. But reading you list of meds and seeing how you are hyperPots I cant help to wonder, have you ever been given an anti-adrenic med like clonodine? Also do you have orthostatic BP issues? My Stress test showed walking hypotension..

I would think increasing Potassium levels isnt great for the people who need salt. The more potassium the body has the less salt and vise versa.. I have to read more about ABRS, thanks Issie..