hyperadrenergic: I've heard this term, but....

[LindaJoy]

Hi, Everyone. Just wondering, I've read some about hyperadrenergic and have seen many posts here that mention someone having this. Could someone who has it please tell me what this feel likes to have? I think I may have it, but won't know for awhile, until testing. I can feel adrenaline rushes and have many of the symptoms of it that Dr. Grubb describes in his published document. I'd just appreciate a personal take on how it feels. Thank you.

LindaJoy

[DancingLight]

for me, it is manifests as feeling very agitated, racing mind, pounding heart all of the time...

it is not relieved my trying to rest, lie down, meditate, etc. etc.

it is worsened by any kind of stimulus...tv, talking on the phone, computer time, etc...

when i get over tired, it increases in severity and then i also get the shakes and stuff...

does this sound like how you feel????

hope this helps...

emily

[nantynannie]

Hi Linda,

Emily pretty much nailed it. I get very shaky and hot and cannot think straight. Nothing seems to relieve it. The adrenaline just keeps rushing and my heart does not stop racing. When I had my tilt table test I was shaking so much toward the end that they stopped my test. Part of my report said that I had an "excess catacholamine response."

Ann

[tammyokc]

Hi Linda, I totally agree with everyone. In fact I've been in that state for 2.5 years now with no rest except from Ambien at night. I feel like I'm in a complete crisis mode and nothing helps. Not my faith, family, or things that normally make me smile can help during the really adrenalic times. I have taken Ativan (anti-anxiety) but it doesn't help much. Sometimes if I feel it coming on strong and I've been there for a while, I take a little Ambien (sleep aid) during the day. I bite off the tiniest little bit of the top of the pill and let it dissolve under my tongue. It's the only thing that helps. But I don't recommend it. For me, desperate times call for desperate measures. When I try to explain this to my cardiologist, I watch what I say cause I'm afriad he'll think I need to go to the looney bin because I feel so out of control with the heart palps., anxiety, and adrenaline rushes. Thankfully my husband is always with me and can vouch for my sanity and that I have always been a happy, easy going person. Ugh...wish I could help you more but I'm trying to get answers for this also. Maybe it will help you to know others know what you are going through. I just ride it out, and somehow God sees me through until a better moment.

[DancingLight]

tammy,

perfect description! it does make me feel out of control too...

sometimes, even the ambien doesn't help at night and then i am soooo upset!

anyway, you are not alone. i think some days i am ready for the psych ward.

thankfully my pots doc knows it is the adrenaline stuff!

oh, and welcome! i've missed your intro while i was away! (having adrenaline moments i am sure!)

emily

[Miriam Poorman-Knox]

for me sometimes I've felt like I was bi-polar. There seemed to be no other explanation,except POTS Miriam

[MomtoGiuliana]

Perhaps this will also be helpful? This is from an article published in 2003 co-authored by Grubb:

"A second (and less frequent) subtype of POTS

has been identified where patients seem to man-ifest

a form of ? -adrenergic receptor hypersensi-tivity,

a disorder referred to as hyperadrenergic

POTS. While these patients share many char-acteristics

with those suffering from the partial

dysautonomic form of POTS, they have several

unique features. Patients more commonly report

a long, slow onset of symptoms rather than a dramatic

abrupt one.

Hyperadrenergic POTS patients often complain

of extreme tremulousness, anxiety when up-right,

and cold sweaty extremities. Some patients

may experience a significant increase in urinary

output after a short time upright. Over half of these

patients will suffer from true migraine headaches

that include a definite prodrome and unilateral (of-ten

frontal) onset with photophobia and nausea.

Many of these patients will display orthostatic hypertension

during standing or tilt and an exagger-ated

response to low dose isoproterenol infusions

while supine (an increase of >30 beats/min after

receiving 1 ?g/min of isoproterenol). It is unclear

whether this hypersensitivity is primary in nature

or a manifestation of deinnervation sensitivity.

Many of these patients appear to have experienced

excessive sympathetic activation in some neuronal

distribution nearly all the time, which is not appro-priately

modulated by baroreflex activity. As op-posed

to the partial dysautonomic POTS patients,

the serum catecholamine levels of the hyperadren-ergic

patients are often significantly elevated during

upright posture (serum norepinephrine levels

are often >600 ng/mL)."

[Radha]

i have many of the symptoms, and eating makes them even worse, but i dont have high blood pressure, i get very agitated and anxious after eating, and cant shut up!

radha

[ramakentesh]

I think most POTS patients suffer from sympathetic overactivity. Without it, none of us would get tachycardia in the first place, making it impossible to diagnose.

My doctor says that whether POTS is being caused by vasoconstriction of the arteries in the brain due to an excessive adrenal/sympathetic response to standing, or is caused by low blood volume, or blood pooling in the lower limbs, since they dont really know why any of these are occuring, or ehwther they are seperate entities or facets of an underlying problem, the symptoms are pretty similar, although the cause might mediate the treatment.

For me, Im all dizzy and spaced out in the mornings, then i get the shakes and the longer i stand or do physical activity, the worse my heart races, my hands tremble and the more irritable i get.

I do get quite anxious as well at times - when i first got POTS more so than now, and sometimes before i get a migraine (which i never got much before pots) i get restless or anxious. The migraines are weird too - POTS has odd migraines apparently - much more all shakes and visual problems rather than truew migraines with pain for me.

[LindaJoy]

Thank you, everyone, for sharing how this makes you feel. I was told, years ago by the heart doctor who told me that nothing was wrong with me except that I needed to go to church more, that I was turning my adrenaline on (as if I was doing it on purpose) and it wasn't shutting off. He yelled at me because of this, like I had some control over my body doing this.

Anyway, that's how I get with these rushes. I will actually feel like adrenaline is rushing up the sides of my head. My face with go hot, I'll feel like my muscles are moving (when they're not, like a buzzy feeling in my muscles). I start to shake, some times violenty, my teeth will chatter, my heart, of course, will go tachy. Then, if I calm down on my own, I'll feel like someone let the air out of me. Now, though, I have Xanax, and I'll take one of these when I'm in the middle of a bad spell.

I will get all heart poundy and shaky after eating, too. My endocrinologist told me that this was because I waited too long to eat and my sugar is now low, or something like that. I think it's the POTS--adrenaline kicking in.

Again, thanks everyone. It's just so good to know that I'm not alone. Or crazy!

Linda

[Radha]

getting shaky and anxious and tachy after eating isnt due to low blood sugar for me, but i cant say for sure for you, but it always happens for me after eating, anyway, was wondering is there any other meds other than xanax and beta blockers to counteract this adrenaline feeling? to tone it down? hang in there!, sending warm thoughts to all of you,

radha

[Christine]

Well, I agree with all of the described symptoms. I am sitting here because I can not sleep. My heart is racing. I can feel my heart beat even in my toes and finger tips. I keep going to the bathroom to empty my bladder. I haven't felt this bad in a long time. I almost wanted to go to the hospital. My chest felt really tight and I had a lot of pressure. I never have had that symptom before. This tight chest and pain really scared me. Usually, when this happens (heart races), I am up for days. I get very little sleep because nothing can stop this. I am very restless too. It is nice to know that I am not alone on this one.

Christine

[LindaJoy]

Hi. This may not work for you, but it worked for me. When I was taken to the Cleveland Clinic years ago, by ambulance from Lima, I had been in tachycardia (150) for a couple of days. I hadn't slept at all and was exhausted but still in tach. When they admitted me, I asked my nurse if he could give me something to shut me down so I could rest. He gave me Benadry. Within minutes, I felt better and actually slept.

Now, when I went to a local hospital about a year ago with heart problems (tach and pain), the doctor there said that Benadryl speeds the heart up. That wasn't the case for me. It actually settled me down.

I don't know of anything else that actually helps to settle the rushes down except, at least for me, Benadryl and Xanax. I wish I knew of natural things. Some people say that certain teas can help, but I've never tried those.

Hang in there, everyone. And, thanks for sharing your stories. As always, it feels so good to not be alone in this.

Linda

[calypso]

I echo what everyone described here ... I feel so horrible when I get the adrenaline rushes. I kind of feel like I have a constant one, then on top of it get even more acute episodes. When I get the double whammy -- like I did this morning, when I was at work and was filling in on doing Page 1A and two other section fronts for our newspaper, I swear I thought I was going to burst. I usually can control myself mentally, but today I seriously ended up taking half a Klonopin in the middle of deadline. I feel much calmer now. I hate to rely on this stuff, but I had so much adrenaline going that I couldn't concentrate on getting the pages done.

Whoever said in a recent post that newspaper editor was a good job for POTS folks should come try this for a day! Yikes. Even when I was the features editor and didn't have as strict of deadlines, it was difficult. And I didn't have POTS then.

Amy

[Miriam Poorman-Knox]

Sounds like the proverbial autonomic storm!!! I agree xanax or something like works for many. Bendadyl works well for those who have mast cell involvement. I said before that I felt bi-polar because I would have the storm for days and not be able to rest. Try what you think will work, and remember that it may not work always. Peace Miriam

[ramakentesh]

Weird thing about these autonomic storms - and ive had my fair share - start with feeling tired, then cold and mentally confused, then my vision goes weird and i start getting the shakes, feeling cold and clamy, yet hot and flushy - then i get these surging feelings in my head - is that they are very similar to migraines.

My doctor even thinks that they are a type of 'migraine equivalent' similar to basiliar migraine. Infact, if you go to a website that talks about basiliar migrains and ask them to list the symptoms of this migraine it is identical to our autonomic storms.

How i found this out, was that my autonomic storms started making me feel nausea and then i would get sound sensitivity - then they basically turned into classic migraines - with that same feeling aweful for days aterwards and really bad POTS symptoms afterwards as well.

Complicated migraines also cause palpatitations and tachycardia. Not something your average GP will ever acknowledge!

I alywas compabt them with two things - an aspirin and a betablocker. Aspirin seems to work surprisingly well, and i didnt believe it would work until i tried it.

[hayley]

what tests can you have to find out if you have hyperadrenergic pots.

h x

[Ernie]

Hi Hayley,

You asked for plasma catecholamine supine and standing.

Ernie

[hayley]

thanks for replying.I have just had my catechlomines checked and they were elevated.Not sure why yet though.I've got to have a clonidine suppression test.

How is hyperadrenergic pots treated.

h x

[MomtoGiuliana]

Both recognized forms of primary POTS are generally treated the same way at this point--salt, fluids, compression hose, exercise, beta blockers, florinef, SSRI, Xanax, etc., until the doctor and patient find an acceptable and effective treatment regime. The hyperadrenergic form may be more likely to cause high blood pressure, anxiety symptoms and migraine/migraine-like headaches, than the partial dysautonomia, so meds to address these problems are more likely to be effective in providing relief.

Katherine

[morgan617]

My first real "episodes" started about 1995. I was doing a medical history on someone and out of the blue, I felt lightheaded and so sick, I had to excuse myself. I went into the nurses area and someone ran over and said what's wrong? My pulse was 180, my bp 200/110 and I just felt awful, like I was going to be sick. She took me straight to my doctor. But halfway there, I got this major heat rush to my face and had to pee so bad, I thought i was going to wet my pants. I went to the bathroom about 10 times in the next hour, with a totally full bladder every time. By the time we got to the doctor, I was starting to feel better. (I never felt any panic, a little anxiety, because I wasn't sure what was happening) So I felt like a jerk. My bp was still 180/96 or something like that, and that's when I started down this very long road. That's when I was first started on BB's. I didn't get a diagnoses till 2003, and even that is, you have a neuro cardiogenic problem, but who knows what it is. After a period of time, my blood pressure just stayed up. Those episodes all but went away . However as time passed no meds worked for anything. Now I don't take anything except hormones and a med for my meneires. In the last 2 weeks, these episodes have started back up. What a major drag I guess I decided if they didn't kill me before, they won't now. But they come out of the blue and my bp climbs way up, peaks, hot flash, flash floods, then lowers. It lasts about an hour to an hour and a half. We just don't have the sophisticated tests here to find out all the stuff you talk about. I was checked for pheo and of course that was negative. The old 24 hour urine and mri route. Now instead of getting tachy, tho, since my ablation, I just have zillions of arrythmias instead. What a trade off.... One of the reasons I stopped BB's is because everytime I take them, I started having continuous episodes of sighing hyperventilation. Even in my sleep, it would wake me up with air hunger. Have BB's done this to anyone else? I love my body, I love my body, I lo......morgan

[DancingLight]

morgan,

yup, feeling that 'i love my body' thing too these days! i push it and it doesn't like me one bit for doing what i need to do to get better! oh poop!

anyway, i just wanted to say how glad i am to see you posting again...i really missed seeing your name here...and your humor as well as knowledge.

it warms my heart to see you checking in and posting....i know you are going through soooo much right now....hugs to you...

emily

[morgan617]

Thanks Em, but it is sooo good to see your shining light here again! Our bodies are poopy. But if you can't laugh, what are going to do, it's too much effort to cry.... morgan

[mom4cem]

Wow, most of what you all describe is how I feel also. Teeth chatter, shakes, frequent bathroom runs, tachy etc, sometimes the teeth chatter and shakes are by themselves. It really wipes me out and lately they have been pretty frequent. The older I get, the longer it seems to be taking me to bounce back. Hyperadrenergic is what my dr. said I was also. The adrenaline rushes sometimes hit me a little spurts and are over quick when it hits my heart, sometimes it seems to effect my stomach and I get anxious flip-flops in the pit of my stomach, but the worst is when the someone opens the dam and the adrenaline just pours out, the tachy, the jelly knees,my head feels like it will explode, I swear I am going to bite my cheeks apart from my teeth chattering so much

[LindaJoy]

Hi, everyone. Wow, you all have the same symptoms that I do when I get these rushes. The headaches are horrible. My head feels like it's a balloon that's being over inflated and is ready to pop. And, the buzzing sound in my head is deafening. Does anyone else get that really loud buzzing sound in their head? I have a low buzzing all of the time, but during these storms, it gets really loud. And, Calypso, anyone who said that being an editor is a perfect job for someone with POTS has never been an editor with POTS. I manage a magazine for seniors and write for a few other niche magazines, and since I've been down with this latest episode, I've had to really rely on others to help me out because I can't drive, and it takes me three times as long to do any proofing because I can't sit at the computer for very long stretches. How you manage, on your feet, is beyond me. My hat goes off to you!!

Linda