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About Hyperadrenergic States...


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I am hoping maybe you can clarify something for me? My blood pressure is an issue - it's labile. I haven't yet had the 24 hour b/p monitoring - but that will come next week. I did have a holter - sinus tach = 100 as the avg bpm....and runs of PAT, and some other ectopic beats as well.

So while the autonomic test on the table was not difficult at all - it only measures flat to tilted near upright at a minute or so (my b/p doesn't crash till 3 hours on my feet)... So I was hypertensive throughout the morning of testing (the afternoon it got quite low though) Bp was high lying flat and higher upright. I would think the higher upright might suggest an adrenergic surge so to speak....and orthostatic hypertension.... but what test tells the doc this is the case? Does cardiology have to get involved or is it nephrology?

Yet the whole picture is clouded by b/p meds that they are fearful of stopping for the sake of diagnostics.

I did the cats and mets testing - if the results come back the same as when I was 20 years old (33 years ago) - they will come back normal. Way back then the doc told me ' you must just run at a high adrenergic state ' and said I didn't have pheo etc...

So if the catecholamines are normal - is that the end all say all test for the hyperadrenergic responsiveness of the ANS? How else can they tell if you are running at a high end state or running fast due to dysautonomia? Are there other labs and tests that can tease this out of my messy group of symptoms?

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General symptoms often point toward a hyperadrenergic state. I have upright tremors, flushing, sweating and hypertension. You can have either too much norepinephrine or just respond to what you have too strongly, so your catecholamines may test normally. With the other three ANS tests, my valsalva and cold pressor tests pointed toward a hyper response in both abnormal BP and HR responses. My BP narrows as the day goes on, with my diastolic getting into the 100's. I have really low BP supine and high BP standing, so I am labile too. So far, I think Vanderbilt is the only center that labels POTS patients as hyperadrenergic or not, but the common goal is to treat the symptoms.

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Would love to hear more on this topic.

We always say that Michael has the hyperadrenergic form of POTS because he has high NE levels tested at Mayo, and also the symptoms. But Dr. Low at Mayo never used this term - though the visit was back in 2006 and I don't recall hearing that term so much back then. Is Vandy the only one using it? How does it compare to the whole "flow" classification?

What meds do people take to help deal with intermittent adrenalin surges, or as Dr. Low called them, autonomic storms ("storm" is a good word, imo!)

Among other things, Dr. Low did diagnose "autonomic instability" - though I'm not sure what he based this on. Maybe the equivalent of adrenergic? He's going to see Goodman at Mayo Scottsdale next month, so will take Low's workup and ask him about it.

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General symptoms often point toward a hyperadrenergic state. I have upright tremors, flushing, sweating and hypertension. You can have either too much norepinephrine or just respond to what you have too strongly, so your catecholamines may test normally. With the other three ANS tests, my valsalva and cold pressor tests pointed toward a hyper response in both abnormal BP and HR responses. My BP narrows as the day goes on, with my diastolic getting into the 100's. I have really low BP supine and high BP standing, so I am labile too. So far, I think Vanderbilt is the only center that labels POTS patients as hyperadrenergic or not, but the common goal is to treat the symptoms.

What are your tremors like. I have them too. At first I was diagnosised with Parkinsons. Are your tremors like that? It's mostly on one side of my body and my head, although both legs will do it. Do you also have gait issues? I also have the narrow BP's sometimes only about 10 points difference. My mother in law, who used to be a nurse, said that that is very dangerous and a sign of a possible heart attack issue. What do you know about it?

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Those of you with "high NE" levels what are your actual levels if you don't mind me asking. I never really see people talk about that on here. I know that Vanderbilt's criteria is very specific and one must have NE levels >1000. Then I've seen some people say they just have to be >600 to be considered "hyperadrenergic"

Thanks. :)

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I was told that I have hyper POTs. I have standing hypertension, narrowing pulse pressure and tremors resting and standing. The clonidine has helped with the pulse pressure and hypertension. The tremors, well I'm still working on that. My tremors are pretty random; sometimes in my legs, trunk or neck& face. I don't have any gait problems. I don't know about the cat levels, sorry. I know that Dr Grubbs recognises Hyper.

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I was initially tested for Parkinson's too. I have an enhanced physiological tremor (the normal resting tremor that everyone has is magnified.) It is in both legs, both arms, head and tongue. I don't have gait issues either and propranolol has "fixed" it. I don't know my upright norepinephrine levels, Vanderbilt did not test them. They simply dxed me based on ANS testing responses being "classically hyperadrenergic."

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I was initially tested for Parkinson's too. I have an enhanced physiological tremor (the normal resting tremor that everyone has is magnified.) It is in both legs, both arms, head and tongue. I don't have gait issues either and propranolol has "fixed" it. I don't know my upright norepinephrine levels, Vanderbilt did not test them. They simply dxed me based on ANS testing responses being "classically hyperadrenergic."

Has the propranolol slowed your pulse down too much? When I tried beta blockers, that's what happened. I didn't do well on the Florineff either, it gave me really bad miagraines. The thought was to use both, but that couldn't happen. One doctor that I saw last, said he thought I should try propranolol but I haven't found a doctor yet, in order to try it. Do you take really small amounts. How do you take your meds. What do they do and what does it help? Getting ready to start the doctor search again.

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I'm taking 20mg in the morning only. I go bradycardic at night, so they want it out of my system before bedtime. It has been the only thing that takes away the tremor. It doesn't work as well without the Klonopin, but it does work. It also helps my upright hypertension and tachycardia. It is a tiny dose, but works for me. My neurologist prescribed it for me.

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I'm taking 20mg in the morning only. I go bradycardic at night, so they want it out of my system before bedtime. It has been the only thing that takes away the tremor. It doesn't work as well without the Klonopin, but it does work. It also helps my upright hypertension and tachycardia. It is a tiny dose, but works for me. My neurologist prescribed it for me.

I go real brady at night. Do you take the Klonopin with the Propronolol or at a different time? What strength is it? Do you feel weird or drugged on them?

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I'm taking 20mg in the morning only. I go bradycardic at night, so they want it out of my system before bedtime. It has been the only thing that takes away the tremor. It doesn't work as well without the Klonopin, but it does work. It also helps my upright hypertension and tachycardia. It is a tiny dose, but works for me. My neurologist prescribed it for me.

I go real brady at night. Do you take the Klonopin with the Propronolol or at a different time? What strength is it? Do you feel weird or drugged on them?

My unmedicated HR is in the 40's-low 50's at night, all night. I take .25mg Klonopin with the 20mg Propranolol in the morning when I wake up. I have never felt "drugged" on either, but I am extremely hard to sedate. I am attempting to wean off the Klonopin since acupuncture/acupressure is doing a really good job at managing my daily headaches, but I am getting rebound/withdrawal tremors. I am hoping that these will calm down once my smaller dose becomes normal for me. Klonopin is highly addictive and it was not reducing my headaches anymore at the current dose (I was taking .25mg 3X daily.) My neuro said to up the dose, but I didn't want to keep doing that.

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Just adding my 2 cents. Mayo diagnosed me with Hyper pots. They used a plasma norep. test. They have you rest and compare that with your levels after standing up ( walking or whatever) for a few moments.

My urine levels for catecholamines ( does this have a spell check?) are so high that I was misdiagnosed with pheochomacytoma.

I believe that with hyper pots sweating and shortness of breath are very common. I know I can't do jumping jacks to save my life. I wonder if regular pots people have horrible shortness of breath?

Also I had to try many betas. I now do ok with nadolol and klonopin only at bedtime. It took months to adjust to the nadolol.

I take cymbalta during the day. If I have to drive I chew nicotine gum (no I have never smoked). I don't know if this is a bad idea but it really helps me and I have 2 young children to care for.

My heart rate was sometimes in the 40's ( during the day) no idea what it is at night... but over time I think you get used to the low hr or it gets better... not sure.

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My unmedicated HR is in the 40's-low 50's at night, all night. I take .25mg Klonopin with the 20mg Propranolol in the morning when I wake up. I have never felt "drugged" on either, but I am extremely hard to sedate. I am attempting to wean off the Klonopin since acupuncture/acupressure is doing a really good job at managing my daily headaches, but I am getting rebound/withdrawal tremors. I am hoping that these will calm down once my smaller dose becomes normal for me. Klonopin is highly addictive and it was not reducing my headaches anymore at the current dose (I was taking .25mg 3X daily.) My neuro said to up the dose, but I didn't want to keep doing that.


I think I'll just ask to try the propranolol and not the klonopin. I have some tramadol that I can take for my EDS I don't take it every day, but when I need it, I take it with a muscle relxr and it helps the POTS too. I bet a muscle relxr might help or a real mild tranquilizer like Serax. First, I need to see if I can get the tremors and tachy better. If it gets out of your system before bed, it may be okay. I tend to hold on to drugs for a long time, my liver doesn't work right. I'm REAL easy to sedate. Super sensitive to drugs.

kayjay,
Didn't know if you knew it, but nicotine is a form of a brain neurotransmitter. Can't remember if it's seratonion or dopamine. You just might need to up your SSRI. You might not get cancer that way, and it will be one less thing that you could get addicted to.

Also, there are some hemopathy products for anxiety issues, and that is really helping me with the adrenal surges. I take one by Standard Enzyme called Anti Stress.
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Just adding my 2 cents. Mayo diagnosed me with Hyper pots. They used a plasma norep. test. They have you rest and compare that with your levels after standing up ( walking or whatever) for a few moments.

My urine levels for catecholamines ( does this have a spell check?) are so high that I was misdiagnosed with pheochomacytoma.

I believe that with hyper pots sweating and shortness of breath are very common. I know I can't do jumping jacks to save my life. I wonder if regular pots people have horrible shortness of breath?

Also I had to try many betas. I now do ok with nadolol and klonopin only at bedtime. It took months to adjust to the nadolol.

I take cymbalta during the day. If I have to drive I chew nicotine gum (no I have never smoked). I don't know if this is a bad idea but it really helps me and I have 2 young children to care for.

My heart rate was sometimes in the 40's ( during the day) no idea what it is at night... but over time I think you get used to the low hr or it gets better... not sure.


I get real short of breath too, but on the flip side -- I barely sweat. I internally over heat because of it.
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I don't know....I had the serum catecholamines test that was 'not' the one that compared lying down to standing. It was lying flat on my back for half an hour in the dark to simulate total calm (but then they turn the lights on very brightly lol & draw your blood through a hep lock placed prior to the test) So there was no comparison - they simply did the lab draw after the rest time.

Maybe that's a starter test somehow ... guess I'll find out if I need the other one. Yet I'm still not clear which test it is that dilineates a hyperadrenergic state. I got a vague 'well the ANS studies didn't come back too shabby at all - sort of answer' - with qualifications that in no way says it's NOT ANS caused symptoms.

I haven't had a 'storm' in a few weeks - where I sweat like unbelievably too much with a bounding heart rate that races and pounds in my ears..... Yet I did have a pain crisis day yesterday....totally wiped me out and brought me to tears -- yet I still went for a 30 minute walk - to see if it would help. It did not help the pain - probably made it worse. But I have to move or I feel like I will simply rot from the inside out and die too soon.

I feel pretty horrible lately - yet aside from the pain day on Sunday - and the not sleeping ... I haven't felt like I was going to pass out for OI and low b/p. Crazy how when you want things to act up to verify and validate through tests -- things seem to be a bit calm. Oh well - it's nothing I can control - we know that.

I did do that blow in the tube thingy that reproduces I suspect a bit of a vaso-vagal response -- which gives me palpitations - but didn't the day of the test. I did the sweat test where they put prickly things on you skin in 2 places to create and capture a sweat response and a stopping of the sweat response. Then the simple couple minute table maneuvering. As I said it was truly easy....

The tech told me to no worry about the TTT being hard - that if I thought it would be hard I was thinking of a different type of TTT done specifically by Cardiology that is designed to make you pass out = either by positioning or meds or both. I never even knew there were different kinds of TTT's by different specialty groups....

I have so much to learn! Thanks to all who wrote....... Hope you are doing well!

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Hi ~

Well as is usual for my group of symptoms - nothing is cut and dried - nothing seems to jump out and grab the docs - but they sure are trying to figure it out for me. I've seen neurology, rheumatology, sleep doctor, nephrology and had a boat load of tests almost each and every day. Tonight is sleep study number one - tomorrow is appt. to discuss those results - and then I see neurology again to do a follow up visit, tomorrow is also a CT scan - today was more blood and urine - tomorrow is a repeat of the serum catecholamines because the tech I guess misunderstood and did only the laying down kind - not the laying down then standing kind - in any even the results don't come back for awhile? Today I just broke down and cried in the Mayo Chapel because I feel like crap - I still have residual worse pain from my pain crisis day on Sunday ... I'm tired and not one single thing has come back with the great AHA moment we all hope for. When the referrals pile up and no one is able to connect the dots with anything you are left with this multi-factorial debilitating group of symptoms with no name..... But no reason to get too disappointed I suppose. When I came I knew nothing - perhaps when I leave I will know nothing - no harm in trying to iron it all out though - in fact I'm kinda proud of myself ... this has been hard as heck. I'll post later on tomorrow if I learn anything from the repeat consultation with the doc... Thanks for asking!

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now what,

You do know that you can go to medical records at the scheduling desk and get copies of everything as it happens. You sign a release and go every so many days and they will print you out everything they have so far. You'd be surprised what you will learn that they don't tell you about. You may be able to put some of the puzzle pieces together and then at least you will know what they are talking about and if you have any questions, you can ask with intellegance.

Sorry the stress is getting to you. I had a melt down on my second week too. You will however, been checked from can to can't and at least have an idea of where you stand. Thinking of you. Hang in There!!!!

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I just wanted to add that I do the nicotine also and it does help me. I think it acts as a vasodilater.

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Thanks .....

Had a nice tearful moment again today - in front of the doc. He tell's me to keep a positive attitude. He's such a joy that guy - so intelligent and kind! I had another wearying day of that serumm cathecholamine test - this time lying and standing. I had the sleep consult that showed mild obstructive sleep apnea with desats to the 70's. I have to have a second study done tomorrow night. I have very labile blood pressure per the study for 24 hours - yet don't know why (or what to do about it). I had an abdominal CT scan with contrast for highlighting the kidneys to check that out as a source. I have small fiber neuropathy per the skin biopsy only and my doctors eval. I have pre-diabetes. My bazillion labs and 2 MRI's show nothing conclusive. My TTT and the little trio of autonomic stuff didn't look abnormal - it was the neuro one - not the cardiac one. So maybe all these little things are what's causing my misery - dunno. In the meantime I still have bilat leg pain - my right knee buckles - stabbing leg pains, burning feet pains, headaches, morning stiffness is extreme for TWO years now! Came on just in between the two knee replacements.

My guess might be:

Joint pains of limbs from hypermobility syndrome. Headaches from bp and hypoxemia r/t sleep issues. High blood sugars from overweight and sleep issues. Small fiber neuropathy from the borderline diabetes, leg issues of weakness with getting out of chairs etc.. from nerve damage from surgeries, & have no idea if I have a hyper adrenergic state or not as the catecholamines aren't back yet ... with standing. Labile blood pressures with no known cause for sure - but at least it's documented

Another consult is due for PM&R - or physical medicine and rehab to see about why my function in my legs is so weird & what to do about it - EMG's showing chronic S1 radiculopathy...

Anyway next week is my third week of testing and I'm getting sooooooooo tired. Tomorrow I have to wait standby for the PM&R ... I pray I get in so I can go home next Wednesday as planned.

Need to find an apartment this weekend....I've decided I wasted 2 years of my life looking for answers and some physician to be able to think outside the box in my remote agricultural area....& came up dry. I go to AZ and in 2 weeks I get everything I need............ I cannot risk having this kind of health & being in the boonies any more.... So Arizona here I come. It's sudden and abrupt - but the sooner I get here the better. I need the confidence of Mayo on my side, the sunshine, the lively lifestyle, the stark desert, the amazing people..... I am so grateful to have made this trip....

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now what,

I'm so glad you are getting some answers. Isn't that a relief!!!! So, you may not have POTS after all? It will be interesting to see what they figure out on the BP, since it's all over the place.

I got the ResMed CPAP, ask for the one that has the automatic altitude adjustment. That way if you travel and go up in altitude it automatically adjust itself. I also like the nasal Opus 360 headgear. I did not like the Swift. That's the one they will have in the clinic, but you can see if you'd like the nasal one. I have clastophobia and it doesn't give it to me so bad. Your O2 being so low will make you feel horrible. Mine were that low too. I also have to use oxygen at altitude. I don't need it here, but when I go to Colorado - I have to use both.

Not much more for them to do. Hang in there. You're coming up on the home stretch.

One thing you might do, before you take the big plunge into AZ life - make sure that the doc will continue to treat you if you move here. I was told that they mostly do diagnositics and not treatment there. They have another clinic that does the locals and they don't do follow throughs at the Mayo Clinic. I may have totally misunderstood, but it's worth asking.I need some additional diagnostics and a plan. I'm ready to try some other meds, I havent tried before and see if I can get more quality of life. My natural alternative things work up to a point - but there has to be more. Although I think in some ways - I'm better off than some who are on meds. It just may be that no one - on or off meds - has the quality of life we so desperatly search for. It's something we'll have to learn to accept for what it is and live to the best of our ability. Don't know - want to prove it to myself.

Well, now what - on to tomorrow!!!!!

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