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For those with hyperadrengic POTS


Gena
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I've been reading a lot of the NET posts and about excess norepeniphrine...I've had my catecholamine levels tested, I think twice, and each time they come out normal...however I have symptoms that I think are similar to hyperadrengic form of POTS?

I am easily startled by loud noises, I can't walk into a doctor's office without my heart racing, I am prone to adrenaline surges and nightmares at night, I can't watch a scary movie or any movie with loud noises and a lot of flashing lights. I was totally fine in all of these situations prior to POTS onset a year and a half ago.

Are these symtpoms typical of the good old regular form of POTS or are they along the lines of the hyperadrengic form? I'm so confused!! :)

Thanks

Gena

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POTS has many different symptoms for many different people. Your symptoms are consistent with POTS and may or may not be the hyperadrengic form.

If your catecholamine testing came back normal then you don't have the excess hormone spillovers...that's all that means.

I know it's confusing but try not to read too much into it. Generally speaking, the treatment is the same for POTS, NCS etc so it doesn't really change things but I also know how sometimes we just want to know and understand what's going on in our bodies.

The responses you describe are an indication that maybe your nervous system is sensitive but if your catecholamine levels are normal than I suspect that simply means the hormone response in terms of reuptake of norepinephrine is normal but that doesn't mean your body wouldn't still release "too much too quick"...it just means once the hormone is released your body handles the hormones as it's supposed to.

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Gena,

I'm very similar to you -- catecholamine tests normal, but feel like I am running on high adrenaline. Don't have any explanation, just wanted to say me too. I also have trouble with loud noises and being startled. I can't do anything that gets me nervous or excited -- i.e., no more rock concerts or roller coasters. And I loved both of those!

Amy

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Gena,

Hello! I don't know very much about the hyperadrenic side to POTS but I also wanted to say that I experience similar things as you. I get startled really easily, have high adrenaline levels, and can't watch scary or intense movies. (it seems my nervous system can't handle it)

Hope you have a good day,

Lisa

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Gena

I have a basic article that describes the major different kinds of POTS--or at least, what is known at this point-- that I can e-mail to you. As you probably already know, the two primary types are hyperadrenergic and partial dysautonomic. They have significant symptom overlap. Partial dysautonomic is the most common subtype (90% of patients with primary POTS)--"These patients appear to be suffering from a mild form of peripheral autonomic neuropathy"..."However, serum catecholamine levels are usually normal or are only slightly elevated with upright posture."

"A second (and less frequent) subtype of POTS has been identified where patients seem to manifest

a form of β-adrenergic receptor hypersensitivity, a disorder referred to as hyperadrenergic POTS". "As opposed to the partial dysautonomic POTS patients, the serum catecholamine levels of the hyperadrenergic

patients are often significantly elevated during upright posture."

The article also notes that other types of primary POTS may be discovered in the future--as some patients do not seem to meet either description.

Then there is secondary POTS--caused by another condition--for example--diabetes mellitus, amyloidosis, sarcoidosis, alcoholism, chemotherapy, heavy metal poisoning, Sjogren?s syndrome, and lupus.

Article is The Postural Orthostatic Tachycardia Syndrome: Definitions, Diagnosis, and Management

YOUSUF KANJWAL, DAN KOSINSKI, and BLAIR P. GRUBB

From the Electrophysiology Section, Division of Cardiology, Department of Medicine, The Medical College of Ohio, Toledo, Ohio

August 2003

Hope this helps--Katherine

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Hey Gena,

The things you experience I do too and only until recently did i realize that my POTS was (a or e)ffecting my movie and scary watching ability. I have never had the cathecolamine test but one cardiologist dxd me with the hyperadregenic POTS. But i don't know I too am going ot look into it.

Hey Katherine would you send me that article too please. If I need to do something e-mail me!

It is all so confusing cause just wehn you think you got it handled it says haha! :)

Stacey :-)

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Thanks everyone for your replies. I realized I misspelled "adrenergic" in my topic title. OOPS! :)

Katherine, thanks for the explanation. I think I have read a similar article before, but I'd forgotten about it. Thanks for posting the differences.

I used to love scary movies, but not any more. What's weird is that when I'm in a really good POTS phase I can tolerate so many things that would normally provoke an adrenaline reaction for me when I'm in a bad phase.

Does anyone get a lot of nightmares that come in phases and then suddenly go away? I'm in a phase now where I have a few nightmares every night and I wake up with my heart racing. I can tell my brain chemicals/neurotransmitters seem really out of balance right now because I'm having crazy mood swings. I can go from this :D to this :P to this :D in a matter of 15 minutes. The mood swings happen primarily at night. This happened last year when I first got POTS and then eventually I improved and the nightmares/mood swings went away. The nightmares usually happen if I've fallen asleep on my side and not often when I'm on my back.

Thanks for all the feedback so far. :)

Gena

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OH man!

Here I go again!

The discussions you are getting into lately!

A few years ago when I first saw Dr. Grubb, he diagnosed me with the beta hyperadgrenatic (I can't spell either!) form of POTS. That was before the connection had been made to hypermobility.

When I saw Dr. Grubb 2 weeks ago, he said he could tell I was hypermobile just from looking at me. He said something to the effect that just as you can look at a person with Down's Syndrome and recognize that the person has Down's, so can he now look at a POTS patient and tell they are hypermobile.

I didn't think to ask him if that means I really don't have the hyperadgenatic form.

So if you are hypermobile does it follow that you have the peripheral neuropathy type?

I once had my catacolomines measured by an endocrinologist and they were normal. However I would have been sitting down having my blood drawn. Do they drop that fast?

There are many people who are hypermobile that don't have POTS. I did bring that up to Dr. Grubb and he said he thinks the hypermobility is perhaps a predisopsition to having POTS but there is another piece of the puzzle that has to be there, too.

What does this mean? What does it all mean? Just when I think I understand a piece of the puzzle, then we learn something new and the whole thing just doesn't jive in my little brain.

Just keep on with these discussions. I feel like I am learning so much. And you, my friends have been just wonderful with explanations lately.

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Don't know if this helps, but I read in an article once that in order to get the correct reading, your blood has to be taken right when you stand up during your tilt test for instance (during the hyper reaction I mean). My tilt test says excessive catecholamine response because I was shaking so badly, but my 24 hour urine test the week prior was normal, even low I think...

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Guest Finrussak

FYI you mentioned "norepinephrine"...this is the antagonist or opposite to epinephrine also known as adrenaline. there's a delicate balance between neurohormones...simply put some turn on stuff and the opposites turn it off. High values of one can mean higher than expected production OR a response to a higher then expected antagonist ( a surge in adrenaline can provoke high norepi OR an exaggerated decrease...depends)

They are ephemeral ( quickly disappear) and the way a test is done and when has a lot to do with results. I have had many such tests on blood and urines for differeing times, done with different protocols...and they are all different results. Sometimes high, sometimes low, and less often, normal,. You really cannot compare results without knowing the protocols used. For example...if blood is drawn after a set number of minutes lying flat in the dark, then again after a set time upright; or if youre symptomatic while testing or even diet within 24-48 hrs previous. Some normal foods like certain fruit and veggies and of course caffeine etc can all affect tests.As can meds, supplements and OTC drugs. Many Drs prefer symptomatic description to these tests...i.e. what you feell when and why.

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I feel like jan and stacey! it's so hard to figure out and the more i try to learn the more confused i get. AND i think after all these years of being sick i'm still sooooo darned confused! especially on this particular topic! so, these posts have been super helpful!

i particularly like Gena's emoticon description of her mood changes! very clever!

so, yes, i am very similar to what you are all describing...esp. with sound, being startled, watching tv (even fluffy tv does me in sometimes, but tv that is sad or violent REALLY does me in) it's really frustrating.

i always feel on 'high alert'. yet exhausted.

i have never had my catecholemine levels tested. my doc has gone on symptoms.

after overdoing it or too much stimulation to what my doc calls an 'overactive sympathetic nervous system' i get sweats, shakes, chills, etc.

jan...the hypermobile thing is complicated. my personal opinion is a strong one--i don't think you can diagnose a person just by looking at them. and i think that it is being waaaaaaaaaay over diagnosed. i can expand on this more if you want sometime. as always, you may have to 'noodge' me if i forget!

okay, i am going to try for sleep again! i've actually been getting some sleep these days, but not such luck tongiht...gee, do you think it was b/c i got upset before bed and then watched too much tv instead of winding down with a book on cd?????? i hate that there are such big consequences for a little bit of tv.

i guess for me i hate that i have to stay so perfectly balanced--don't get too upset, don't get too happy, don't get too excited, don't cry, don't watch too much tv, don't do this, don't do that....b/c they all kick my system into overdrive and it is VERY difficult for me to calm my system down. having to be so regulated makes me feel so confined and like i am not truly 'living' b/c i cannot really feel my emotions in the ways i want to. does that make any sense to any of the rest of you????

as for teh nightmares....i'll have to think about that one.

i do think that i can have some sharp mood changes very quickly when things are 'off' POTSwise and it's sort of weird b/c i know that i am reacting in a way that is 'beyond' me and different from my usual way of being. for the most part, i am very stable, but POTS can definitely make me feel crazy mood wise.

okay, i hope this makes one teeny bit of sense at this time of the morning!

good topic gena...and i always love seeing you around on the board! i know you haven't been feeling up to par at all lately, and i hope things turn around for you soon.

later alligators!

emily

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Ann and Finnette...I noticed you mentioned blood tests for the catecholamine (sp?) levels. I had a 24 hour urine test at Mayo. They did not mention the blood test at all. Oh well, at this point I'm so tired of tests, I probably won't pursue that one.

I guess my question is if you know you have hyperadrenergic version of POTS, wouldn't the treatment be slightly different and more specific than just the general therapies? At least you know which substances are too high or low and what was throwing your body off kilter and how to approach it?

Well, maybe that's wishful thinking...but I've been in a bed spell after being in such a good phase for so long, so it's really disappointing to be back in the hole for so long.

Emily, thanks so much for your post. It's always good to hear from you too. I know you've been in the hole for a very long time. It seems like your are having some good or better days at least. As far as my moods go, I don't really express them, they are more internal mood swings and I don't express them to anyone - well my hubby sometimes. I go from being calm and happy and thinking "yes I am strong and I can get through this" to "oh my goodness I'm going to die of a heart attack or stroke" or "my life just plain *****!" and then shortly after i can be all happy and calm again :)

I kind of agree with you on the hypermobility thing too. All of my doctors have been so quick to point out my flexibiltiy, but I am not as flexible as say someone with EDS might be. Yet, there are a lot of flexible people in the world without autonomic issues.

Well I'm rambling now, so better run!

Gena

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"The study currently under debate in the New England Journal of Medicine printed by Professor Murray Esler, et al. from the Baker Institute in Australia has done extensive testing on the catecholamine levels in POTS patients, there spill-over (which is undetectable by conventional catecholamine urine tests), peripheral autonomic neuropathy (as suggested as a casual factor by Streeton, et.al) and NET deficiniency and found that in ALL patients there as no evidence of peripheral denervation."

Can you provide more info or a link? I've tried to find this article you mention in NEJM and can't find it.

Thanks!

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Just skip to the the last paragraph if you don't want the details. . .

I have spent time pouring over the "Known Causes of POTS" and the "What Helps" topics on this site and others. I have chased a lot of these "causes" on myself.

When I read that there may be a link to POTS and hypermobility, I went to the U of Michigan genetics clinic. That doctor, that seemed to be very knowledgeable with EDS said I am hypermobile and may or may not be EDS III. So all I knew for sure is that I, like many POTS patients am hypermobile. HOWEVER . . . I then talked to people from the EDS group and they do not associate type IIIs with POTS.

When I read that the nutcracker syndrome can be one cause of POTS, I contacted the Doctor in Japan who had done the research and he told me what kinds of ultrasounds I needed to diagnose it. I talked my primary care doctor into taking the ultrasounds--color ones while standing up and I Fed Exed them to the Doc in Japan. He thought I did have the Nutcracker phenomen but couldn't be sure because the pictures I sent him still didn't fit his specifications. Since nobody here knew how to do the pictures right, I took them to an excellent vascular doctor and also discussed the theory with my cousin who is a vascular surgeon. These 2 vascular surgeons explained what they knew about the left renal vein (a factor in the Nutcracker) and I came away from that unconvinced that my possible Nutcracker was my POTS cause.

When I read about a lot of POTS patients were having neurosurgery for tonsiluration herniation (Chiari) or brainstem compression, I got a brain MRI and sent it off to Dr. Heffez. He read it and said I had plenty of room for my brain. He also read my cervical spine MRI and said I had one stenosis somewhere, and that my neck should not be able to hyperextend like that without force, and maybe that was a cause, but nothing indicated that I needed surgery.

When I read about some POTS patients using DDAVP and having some kind of pseudo diabetes insipidus, I talked my primary care doc into testing me in his office with a water deprivation test. I also sent my brain MRI off to Dr Robertson in Chicago (not the Dr. Robertson who is known in POTS circles--this Dr. Robertson is a world expert in DI) and he looked at my pitutitary and read my dairy that I kept while taking DDAVP and talked with me on the phone twice, and wasn't sure I had DI at all--even though I have all the symptons and am unable to concentrate my urine. Also people with true DI and the DI organization do not recognize an association of DI with POTS.

When I heard about Dr. Grubb, I went to see him. I tried several different meds he prescribed. I think Dr. Grubb is wonderful. I think he has helped many POTS patients, but he is limited by the meds he has at his disposal and by limited knowledge of POTS in the medical community.

When I read that some people with chronic fatigue had been cured by being treated with antiviral medicines by a famous infectious disease doctor in Michigan, I went there and had him examine and test me. I tested negative to all the viruses and negative on EKG for the signature T-wave abnormality. However, I do have the chronic fatigue.

Interestingly enough, I have never been tested in an autonomic testing lab--no TTT, sweat test, or EP study--I have been very cautious about what kinds of testing I do.

After being sick for so many years, with nothing helping, and so many avenues explored, I concluded that I don't know what causes my POTS and the medical community doesn't either. All those listed "causes" are speculations, based on the incomplete knowledge of the medical community.

Also my experiences have made me skeptical of hearing about new things that work, such as mestinon, however I may try it yet. (H***, I might even try the Cymbalta, yet.)

Nothing I have explored or read has yet, felt RIGHT to me. I always think, well, here is another bit of knowledge we haven't had before and maybe it will prove useful, but nothing that has come down the research piepline has felt RIGHT.

For some strange reason, the research at the Baker Institute feels RIGHT to me. For the first time I think we are getting where we need to go.

I have wanted all my life to be able to know what is wrong with me before I die. For the first time, I think it might just be possible.

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The thing that makes me skeptical (about any solution being relatively simple, or explaining the condition for every case) is that some patients respond well to some meds, while others don't. E.g., my POTS doctor told me that only 50% of his patients respond well to a low dose SSRI. Also, while many seem to improve over time, others don't, or even seem to get worse. This suggests multiple causes of the condition.

When the results are published, please post a link or reference to the article! Thanks for alerting us to this.

Katherine

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