Taking a Poll: How many are hyperadrenergic?

[LindaJoy]

Hi. I'm taking a poll. How many of you with POTS have been diagnosed with the hyperadrenergic kind?

How do you know?

What do you take for it?

HOW DO I SHUT THE ADRENALINE OFF?

What does your blood pressure and heart rate tend to run?

Do SSRI's help at all? If not, what meds do help?

Are you hyperadrenergic for days at a time, or do you just have spells, or storms?

Sorry to ask so many questions, but since I've started taking my new SSRI, I can't seem to shut my adrenaline off, even with Xanax, my blood pressure is always higher than usual, as is my heart rate, I'm tired to the point I'm bedridden. I need some help and support, please.

Thanks.

LindaJoy

[morgan617]

This is always a little confusing to me.

I think I am hyper because my bp goes UP with my pulse rate as opposed to dropping. When I grey out or feel syncopal it is usually around 220/130 and my pulse will be around 130 or so.

I can feel surges going through my body. Especially in my throat and head and chest. There's this awful feeling of fullness and then I get the heebie jeebies and can't sit still. I get really bad tremors and my speech is affected. It gets very halting because I can't find words and things.

I don't often have "storms" but I have had them. But even with one episode, it will last a long time and then I will feel awful for up to a couple days.

No one here will do the lab tests required to find out what is going on. My pcp says even if he did, he wouldn't know what to do with them, and I guess I can't blame him. All it would do is verify what we already know.

Don't know if that helps, because I haven't been given a specific diagnoses. Dr. Grubb has said with the hyperandrenergic that your bp goes up and doesn't know when to stop, so I just go by what I've seen him say on tapes. morgan

[janineerrn]

Hi,

I know because my adrenal system kicks in over the slightest thing. I could startle over something stupid and my heart rate shoots up to 150. I found tht my adrenal storms happen when my bp drops too low. And then wow do I go for a ride..... High heart rate, bp spike, nausea, chills, anxiety, chest pain, sharp stabing pains, numbness in limbs, cant sit still, dizzy, feel like Im gonna die,. Then it slows down and I vomit and shake and feel like I just ran 100 miles.

If you look at the biology of what actually happens eg the flight or fight response... the symptoms make sense. I found that the combo of meds I am on and not freaking out during an adrenal storm helps. I get them less frequently but, I still get them.

Good luck, I know it is horrid.

Janine

[michiganjan]

I am considered hyperadgrenetic--that is how Dr. Grubb classified me. Hyperadgrenetic POTS most likely secondary to an autoimmune disease that isn't understood yet.

When the adrenelin runs, then it can cause any or all of the "flight or fight" symptoms. It can cause mild feelings of uneasiness or a full-blown panic attack.

Michigan Jan

[mom4cem]

I don't know exactly if that is what I have, but I certainly have what everyone has listed with it. Fight of flight, surges throughout the body with teeth chatters and chills. My b/p usually goes up as well as hr. Feel like I will crawl out of my skin.

When I tried lexapro my h/r did not go up that much but all the other symptoms were intensified and added a few more like insomnia and crawling feelings.

[Marli]

I was told I'm hyperadrenergic. My pulse goes up after about 20 minutes of standing/walking and that is when I feel lighheaded and have to sit down. My pulse usually goes up into the high 90's-low 100's.

I was put on a very low dose of Atenolol (beta-blocker) Beta-blockers don't stop the adrenaline, but they block the receptors that accept it when an excessive amount is put out there by the adrenal gland.

Thus stopping you from receiving the huge rush of adrenaline that makes the BP and P from going up.

Good luck!

[appleby]

I find this part so confusing, I don't think my swings are as great as some of the rest of you. My resting pulse is 100 and resting bp is 80/50. If I am sitting in a chair my pulse and bp are fairly consistent. I black out a lot (standing, after eating, etc), but have never fainted. If I go for a short walk my pulse will go up to 150, and any kind of cardio workout makes my pulse go too fast to count. I have had my Norepineprin and Epenephrin measured and they both tend to be high, however my Norepeniphrine is a lot higher. I have had an exaggerated ACTH response to stimulation, and Cortisol values that were sometimes low and at other times just fine.

I don't understand why the medical community has so little to say about this syndrome, isn't there enough going on for them to see some patterns in all of us. It seems to me that a lot of us are reporting very similar symptoms and profiles. Is there anyone out there that has any contact with or knowledge of some good fundamental research?

[dizzygirl]

I was told about 2 yrs back that i have hyperadrengic pots.. and experience what you talk about..

I take clonidine to help the surges and such ..as i tend to get them at night.. so i take the clonidine before bed..per Dr. g.. it helps w/ the hyperadrengics

[Christine]

Hello,

I too have been told I am hyperadrenergic. Usually it happens when I put too much strain on my body. Either physically or I am just stressed out. My heart rate increases and my blood pressure drops. I get dizzy and nauseated. I feel like my heart is jumping out of my body. I have body twitches the whole nine yards.

When I have a bad attack, it will take days to go away. I have learned to try and control it and listen to my body. When this happens or I know that I have a chance of this happening, I change my rountine. For example, one of our good friends daughter died after Christmas last year. My husband and I are her Godparents. I knew with all of the emotions, family, funeral etc.. I my body would be shot after the funeral. I was on my feet for hours at a time. I did make it through the 3 days of sadness but they my body gave out and let me tell you I was in so much pain and I became really sick.

Good Luck,

Christine

[ramakentesh]

Most of POTS patients have hyperadrenergic POTS - its quite easy to test for - in a tilt table test they just need to measure your norepinephrine levels supine and at each stage of tilt as well as norepinephrine's neural metabolite 3,4-dihydroxyphenylglycol (DHPG). this will demonstrate impaired reuptake of norepinephrine and if this applies to you, then you have an excessive norepinephrine response to physical activity caused by its impaired reuptake

[Lulu]

Dr. G told me I had the hyperadrenergic form, because my BP would go up on standing. my BP & HR are now well-controlled with Labetalol, Clonidine and Norvasc, generally runs in the one-teens over seventy something and HR around 50-60. but i still wake up with the shakes, and have BP spikes, only now they won't kill me and a spike in HR goes into the 80's. but i'm still having lots of problems......so i don't know what's going on.

my BP doesn't go up that much on standing anymore (it used to shoot up 30 points or more) so now when i'm at the ER, they do my othostatics (on bed, sitting, standing) and there's no significant change. then they look at me like i'm nuts! but i'm still having syncope nearly everyday......hope Dr. G can offer some insight when i talk to his office friday.

is there such a thing as mixed hyper & hypotension?

love and light,

lulu

[Sunfish]

saying that MOST patients have the hyperadrenergic variation is not an established fact that is agreed upon. while this is thought to be the case by some of the autonomic docs, others feel that it's the minority rather than the majority who are truly hyperadrenergic. perhaps a bit frustrating that there isn't agreement but just another demonstration of how little is still really know in the realm of POTS/dysautonomia and how much room there is for further research, learning, etc...

melissa

p.s. by anyone's definition - both those who think it's the majority & those who think it's the minority - do NOT have the hyperadrenergic variant.

[yogini]

I have never really been focused on whether I am hperandrenergic or not. According to Dr. Grubb's recent article, I am not. Are there different treatments for each type of POTS?

[dianaD]

Hi,

I was diagnosed as hyperadrenergic POTS by Dr. Fealey in Mayo Clinic last summer. I failed the TTT and had all the symptoms of hyperadrenergic POTS. Dr. Fealey gave me the diagnosis before they even had the lab results in (he felt that confident just by the symptomology). But the lab tests confirmed it - my catecholamines were high when I was standing for 10 minutes.

My heart rate went up 50 bpm on the TTT, but only go up about 20bpm when I stand. My BP raises when I stand also, or when I exerise.

My heart rate is controlled by Zebeta (beta blocker) but I may need to go off of it because of wheezing and depression. I take xanax and clonazepam, and they help, mainly by knocking me out!

Early on, there was nothing I could do to control the surges. They just took over my body, and I was sensitive to any sound, lights, stress, etc. This has gotten better over the last year, and it has been over a month since my last surge. I can tell that I'm not as sensitive as I used to be.

You should know that I started taking minocycline, which heals nerves, about 5 weeks ago. About 2 1/2 weeks after I started it, my tremors and adrenergic tendencies basically stopped! We don't know if that is from the minocycline or just coincidental, but if your doc is up for it, I would highly recommend trying it!

Now, my only symptoms are exercise intolerance, difficulty breathing, and midsection pain.

Hang in!

[jclair]

how do you find tapes from Dr Grubbs?

[futurehope]

Jclair,

Check out this answer that Michelle posted concerning one doctor's reply to:

What does hyperadrenergic mean?

http://dinet.ipbhost.com/index.php?showtopic=4963&st=15

[Sunfish]

tapes that have dr. grubb (and many other top docs) are available at www.ndrf.org under resources ( i think). they're from the NDRF conferences, though some of the info is a bit outdated. they're still really good though. there are also tapes of dr. grubb only at the DYNA "retreats" (for youth with dysautonomia) that may be available at www.dynakids.org. not sure about that though.

also keep in mind that different docs/facilities define hyperadrenergic differently so it's definitely not a definitive science at this point....

melissa