RichGotsPots

@doozy thnx this is what I wanted to see. I'll call them and ask them if is it can see blood flow in the lungs too.. Also the nuclear exercise test looks interesting...

Dr Grubbs hyperadrenic paper says if it's above 600 I am but my doctor said above 800, so now I'm confused...

So I finally got my results back my epi was 80 and my norepinwas 630. The doctor said that 800+ is hyperadrenic but this article says 600+ so do I have it or not I'm confused?

Finding gene issues are amazing don't get me wrong, because then we can actually get targeted gene therapies. The only problem is all of those therapies are light years from ever happening because we are small orphans in a pool of monster drugs like for cancers,obesity, heart disease. That's why we are literally only getting borrowed medicine for tachy, or hypertension or anxiety... We don't even have a recommended list of beta blockers. There are literally at least 20 beta blockers on the market, if I did a poll on here I bet ppl have tried all 20 plus ivabridine... So even if there is one gene or epigenetic mod to point to, how it is it cause such random symptoms in us. Especially those of us whose symptoms evolve or change. So would the gene therapy, block any more modifications, or does it repair the gene and what pharm company would even fund such an orphan drug... Sorry to sound so down, just in a hurry for answers lol

I wish I could read a report or study about it, if anyone has it... Sounds like a test I could need, but I already had a vq scan just not looking for pooling or flow issues, they just look for clots...

Not sure but I would think a current mapping would include those epi modifications as well not just sequencing...

Someone recently told me they had they done to check their lungs. Dr fouad apparently invented it... Has anyone else had it?

http://prettyill.com/. This is her website

I found this link for ya

Pretty soon there are new companies that will actually map the whole genome for under $1000. Maybe in the next 5 years and then we won't have to guess at markers we will see the whole picture, so I'm kinda waiting for that...

They also use it as a varicose vein therapy which is interesting. I've also read it can cause vasodilating not sure if that will be good...

Julie I did think of something where there is a connection. We're you ruled out for pheochromocytoma? Says this in wiki about it " Elevated blood glucose level (due primarily to catecholamine stimulation of lipolysis (breakdown of stored fat) leading to high levels of free fatty acids and the subsequent inhibition of glucose uptake by muscle cells. Further, stimulation of beta-adrenergic receptors leads to glycogenolysis and gluconeogenesis and thus elevation of blood glucose levels" Even if you don't have this I wonder if some of us pots ppl are affected in a similiar way because of our elevated me levels... Also the best thing for you to do is try to have your doc contact dr afrin. He is the dr grubb of mast cell issues. There is no 100% way to diagnosis because some mast cell issues are very tricky buggers

@issie I do think the autoimmune/low immune is caused by each other and go hand in hand. Autoimmune means the immune system is attacking itself. That attack could be causing the igG weakness, I couldn't really find causes for it otherwise. Or maybe the opposite the immune being lowered can make the autoimmune thing activated....

Rama you may be right about mention, but then the same can be said for chlonidine. But these two meds are only scratching the surface, I've found more potent adreniline inhibitors then these with less side effects. If my ne is hyperactive I'll be experimenting in that direction.. But I think that hyper or not it's not the issues the problem is that probably everyone of us has dysfunctional ans neurotransmitters,the problem is how to get that equilibrium back for everyone how to evaluate this dysfuction on a deeper level. Why aren't they figuring out ways to continuously monitor our neurotransmitters activity? Anyway I'm always for non pharm treatments, still believe that resQguard is one of the coolest, innovative techs for us and hardly anyone has beEn tried on it. I Found this interesting device that acts on central sympothetic drive hyperactivity. http://www.ardian.com/ous/medical-professionals/procedure.shtml it aim is actually on lowering BP... But I wonder how it might act to balance it too along with neurotransmitter activity..

I haven't been tested yet, it's far off on my list of tests. Basically mast cell docs are even in shorter supply than pots docs.. Maybe I'll get my immunologist, who is cool, to test me one day soon..

@Hyperpot8- Yes I'm expecting to get my catecholamines results next week, I'll be surprised if mine don't give yours a run for their money lol Have you read any research that shows the link btwn catecholamine elevated levels during standing and BP wackiness?

McBlonde, maybe see if you can get a lower dosage so you can slow down when you need to and tapper off it slowly at times. I can imagine its hard to cut a 1/4 of a pill into smaller pieces to tapper...

I recommend doing some googling on it. The 3 supplements are actually all different and do different things. Acetyl is supposed to cross the blood-brain barrier and so it affect the brain more. I've heard that this is good and bad, depending on what someone has.. So I'm going to be trying this one in very tiny doses. The other two are for energy and fatigue but also they have been found to help with inflammation on veins, so in some situations people with varicose veins are prescribed it.. There is more if you do a simple a search I'm sure you'll find a ton of info..

I realize from reading some old posts that there are a lot of people who have tried these supplements so I wanted to see just how many people tried them and in a simple comment if you tried them what was your experience like. I'm going try a complex one with all 3 types. But I really just wasnt to try the Propionyl L-Carnitine one but can't find it in the form I want.. The Acetyl form doesn't seem like it's for me at all..

@Linz- can you make a signature with some of your dx's and meds?

In Dr. Grubb's Hyperadrenic Pots paper he showed that 4 out 4 people who tried it had a beneficial experience. It's hard to believe more people aren't tested on it with 100% positive results. These positive results for hyperadrenic pots are hard to believe. Adderall is a psycho-stimulant like cocaine I wish there was more study on it..

I get my test results back in a week I'll try to post the results..

@HyperPots8- what treatments have you tried so far and which have been the worst and best, if you don't mind talking about it?

The trick is to get the blood gas done while laying and compare it to standing, but to be honest, there isn't anyone doing that so there isnt anything to compare normal values to...

@Hyperpots8- I see what you mean, that's odd. I thought they meant the BP increase with tachy or high ne levels. Either way it's an odd description because I dont really see what an increase of BP or Orthostatic Hypotension has to do with it.. I thought it mainly has to do with NE levels being high.. With my 2nd tilt last week my BPO went from 130- 144 then after 5minutes boom dropped to 93..