Grubb 2011 Article On Hyperadergenic Pots

[arizona girl]

Just found this don't know if it's been posted yet. Really breaks us down into groups/symptoms and treatments.

http://stars-us.com/files/file/Clinical%20papers/110819-tl-Hyper-POTS%20Proof%20copy.pdf

[McBlonde]

That was very interesting. Thanks. So..... if Midodrine made me feel "normal" (until the side effects got me) is that any indication of what sub-type I am?

[RichGotsPots]

Thanks for the article, where did you find it? It's interesting they define it as "orthostatic plasma norepinephrine level ³ 600 pg/mL and a rise

of systolic blood pressure (SBP) of ³ 10 mm Hg upon standing"

I didnt know that a rise in BP was included. Mine doesn't rise I dont think, but if I walk it drops. Even if I dont fall into Hyperadrenic category I do think my adrenaline is dysfunctional... Getting tested next week for my levels..

[RichGotsPots]

Something else surprising is that from 2003-2010- 7 years they only had 300 patients to review, only 60/year.

[arizona girl]

Yea, I know not a lot when you consider the informal polls and posts here reflect about half us are presenting hyper.

I would have been one of those patients, but I never sent my cat test result to them showing I went from 400 to 1100. So, maybe they have patients they missed, who didn't come back. In my medical record he wrote hyperadrengenic. What I think is interesting is where patients had more symptoms and not all were hypertensive, but still considered hyper.

In the meds area the only med that was 100% was the adderall though only 4 out of 27 had used it, but 4 for 4 had effective results

I also wonder what meds are considered neri. I was not able to take clonidin though it appears to be the second most successful. My body started acting like it was a drug addict to it, requiring more and more to keep my bp/hr down, for me coming off was awful and scary. I don't have that problem with labetalol which is both alpha/beta and I can take as needed, it also though isn't always effective.

Also what happens if you are both hyper and autoimmune? While I didn't do the mayo panel. I have all kinds of positive antibodies for thyroid, rheumatic and biopsies showing an autoimmune respose to nerves and tissue, also have an immune deficit. All of these are being treated with their own appropriate treatment. But my cardio said all the immune stuff is like a circle and when one goes off then others are bound to follow, which reflects what has happened with me.

So is there a way to treat autoimmune hyper? I don't know that they are there yet.

[RichGotsPots]

I saw that about Adderrall too, I wonder why if 4 for 4 they dont try it on more people... At the conclusion of the article he states, "These patients are usually difficult to treat and there are no standardized treatment protocols known at this time for patients with hyperadrenergic POTS."

I get tested for Hyper in less than a week and if I'm hyper then I'm going to experiment on a few meds that I've researched that aren't typically used yet. So far I've steered away from any pharm treatments because of fear of making my breathing worse. I'm super-sensitive to stimulants, asprin, lidocaine and I've been wondering it's because I'm hyper POTS.

[arizona girl]

bump for the newbies!

[RichGotsPots]

Got retest yesterday and I had the 10+ increase in BP upon upright tilt have to wait to the no results...

[HyperPOTS8]

Rich, the review says increase in norepinephrine OR increase in BP, not AND

[Birdlady]

I definitely meet this criteria for HyperPOTS then. Resting BP was 101/61 and it went as high as 127/81 with a HR of 150. NE levels were 613pg/ml

In my normal day life, my BP doesn't go up like this though.

[lexcyn]

I thought this study was really interesting, gives you a lot to think about and ask about. Thanks so much for putting this up for all of us.

Cynthia

[RichGotsPots]

@HyperPots8- I copied that description right off of the article (intro- 3rd paragraph) and it says and...

[HyperPOTS8]

Rich, in both the abstract and the section called Crierion fo dx hyperPOTS it says OR. Also in the table listing the clinical features you will see that only 18.5% had orthostatic HTN. I do see in the intro paragraph it does say AND but that is clearly a mistake.

[Birdlady]

I think in time this designation will get changed. They say Hyper is rare, but it seems like a lot of us have it here. Perhaps there's a larger concentration of Hyper Potsies on forums because the treatments haven't been successful. Those with PD POTS take florinef, salt and water and actually get better so they don't feel the need to reach out? Just makes me wonder really. I'm not trying to diminish anyone's symptoms at all.

It is abnormal for your BP go up upon standing even just slightly? I was under the impression a slight increase in BP upon standing was normal.

[diamondcut]

I have to totally agree with that statement Dana, are we on here because really many of the specialists in POTs dont really know what to do with us once florinef and Midodrine has been chucked at us. It seems to be the real experts like Grubb and others who will lead the way in helping people like us.

To say only 10% have Hyper pots i think is false. My old Prof use to say that i wasnt an easy case to treat, but who is easy with POTs patient? When you look at the lists of other conditions nearly everyone has to go with it. Its like a maze....

My appointment with my new POTs Dr went ok last week, he is prepared to try SSRI's and other more unusual meds that are not the clear cut PD line of treatment.

He did however say to me I am "the lucky one as i have a diagnosis"

I nearly said yes mate, it took you 5 years and thousands of pounds of my families savings later, but yeah got a diagnosis at last!!!

So i am the "lucky one" that lost my own business i built up, became house bound for 6 months last year because my migraines became so bad and i had to live back with my parents!!! Oh sorry this is turing into a late night rant, i think i need to swallow a truck load of Magnesium at this point to calm me down lol.

It just annoys me that we have to battle to find the treatments to help us.

I dont know about blood pressure on standing, i know if they think you have nueropathy it would drop. But i would say it should probably stay about the same in a normal person.

Dana how are you getting on with 23 and me. I ordered my kit the other day. Told its like reading Greek though!!!!

[Birdlady]

Ugh I hate it when people say things like you are "lucky" ... I think they are trying to be nice about it, but it really doesn't make me feel all that good. The doctor I originally went to for POTS had no idea what to do with me either. He tried the few basics and really was just shocked I didn't do well on Midodrine and was completely confused by my TTT results. My BP actually went up much higher during that one. I hit 140/80 which is unheard of for me in my normal day activities. Then again I'm not taking my BP every minute while I'm doing stuff either...

23andme has health reports you can read, but as far as finding things that might be causing POTS, yes it can be hard to decipher. If you are doing your own research, which I really recommend, you will have to take a crash course in genetics. If more people are getting testing through there, maybe we can start a thread on things to look at? I dunno if that would be ok or not. Definitely run your data through Promethease. It can pull stuff from your data that 23andme doesn't tell you about, so otherwise you would not have known about it. If you need help, feel free to PM!!

[diamondcut]

That sounds like a really good idea about the thread as i am not the most technically minded student! I will PM you.

Its strange but looking at your profile we are both the same age and whay you said about things not being right in early childhood but coming to the fore front at around 16. Just like me really.

[RichGotsPots]

@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..

[HyperPOTS8]

Rich, I have very high NE levels (1300-->3300) and Sometimes my BP goes up with standing, sometimes it's the same and occasionally it drops significantly. Most of the time it's essentially the same.

[RichGotsPots]

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

[HyperPOTS8]

Rich, I take clonidine patch and prn oral clonidine which has been very helpful for me ( no side effects). I also have severe hypovolemia documented on blood volume analysis at Mayo and take Florinef and a high salt diet which also have been very helpful. I have also completed dr Levine's exercise protocol and workout 5 hrs/wk.

Have you gotten your catecholamines back?

[RichGotsPots]

@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?

[HyperPOTS8]

Rich, I am looking forward to hearing your results

[ramakentesh]

Dr Grubb bases these observations on clinical presentations and is not involved in etiological research. Therefore the study is based on the assumption that POTS with NE above or below a random number and with postural hypertension has some meaningful delineation. Newer data certainly does not support this assumption, as does the fact that some of the 'hyper patients' in this study responded to medications that INCREASE sympathetic outflow or vasoconstriction.

[ramakentesh]

many 'HYPER' patients have discordant MSNA activity, meaning they have normal NE levels but increased potentiation. Again making NE levels as a marker for sympathetic activity redundant.