Uhhhhh... Maybe Not Pots?

[rmlyonsfamily]

Just went online and saw that K's labs from her tilt table are up... As she flatlined they drew the Norepinephrine. It was only 337 and normal is 70 to 750, says it's within limits. Lovely.. just lovely! Thought we had all this figured out.. and now, not so much!

[MomtoGiuliana]

I believe POTS is simply diagnosed based on an increase in heart rate of at least 30 bpm from supine to upright.

From DINET website:

"Postural orthostatic tachycardia syndrome is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing (Grubb, 2000). These exaggerated heart rate increases usually occur within 10 minutes of rising."

Norepinephrine levels might be measured as part of a TTT -- elevated norepinephrine is one indicator/cause of POTS. However, not everyone w POTS will meet the criterion for hyperadrenergic POTS.

You may want to take a look at this discussion of the various mechanisms:

http://www.dinet.org/what_are_the_mechanisms_of_POTS.htm

[lieze]

I get happy with normal lab results.

I don't think everyone here necessarily has elevated norepinephrine.

Mine was 800 but that was 2 years ago and my guess is now that I've adjusted my routine ( I pretty much do nothing ) I could get a normal reading.

I was told 800 was really not that bad by an ER physician that he'd seen people with much worse.

I had 3 panic attacks that day of the high reading.

My body/mind was just out of control and I couldn't get a grip.

[lieze]

Another thing and this could go either way...my feeling is my body is compensating for the drops on bp or heart rate.

My adrenaline surges happen for a reason some of the time. It kicks me back into gear-and gets that bp up or heartrate up...

But dysautonomia is an imbalance of the autonomic nervous system. My understanding is things are just out of wack. Those bp's and heart rates can go high or low.

A portion of us just have the type that send us high instead

of low. But the mechanism that causes that may originate from the same source.

It sounds like K may have multiple issues going on with the sick sinus syndrome. I also had an abnormality of the heart that was exacerbated as this came on and it was an

abnormal pathway entitled AVNRT. Something kicked that into gear but it is present in 75% of women. It would do one of two things either slow my heart down which it did at times. My pulse would slow down and get thready or most of the time I would just go into a butterfly feeling with a

heartrate of 170-190. So I opted to have that pathway ablated and have not experienced that since.

I still have episodes just no more SVT's with them-my heart still beats fast but not as fast.

No more slowing down....

So my gut has leaned from the beginning that they should fix K's heart first then see where she is at with a normal heart rate. See how that balances things out for her.

She maybe able to handle eating a lot better with a heart

rate of 70-80 versus 30 and it may help solve a lot of her problems.

I have to add I have nothing to back that feeling up-it's just a feeling so you have to go with what educated doctors

with experience feel is best for her.

I have a feeling the cardiologist at Baptist was just not comfortable with her overall condition and did not want to

make that call but I could be wrong.

I have also gotten the anorexia accusations and all types

of suggestions that I have created this in my mind because I have a bad marriage. I guess as it makes me angry at the time and I think they just don't get it and feel put off

that any time at all that should be focused on me as a patient is spent inquiring if my husband has affairs or suggesting he's gay??? Who really cares??? I felt like my

life was in the balance and I was fighting for it. It felt so real to me whether it was psychologically induced or not I needed help!!!! I felt I was in physical danger!

I think you have to address first things first.

One is these abnormal vitals-a heart rate of 33 is not normal. Then once we get the heart rate up yes we need to look at nutrition and we have to get K's body used to eating again. Nutrition will affect her and maybe a dietician should be consulted while you are in the hospital to make sure K is getting adequate calories, protein and nutrients.

Maybe liquid nutrition things like ensure would help-but until we get that heart rate up...it just makes everything more difficult...just my thoughts.

[HopeSprings]

Yup! to what MomtoGuiliana said.

[kclynn]

What was her starting rate? And others have be diagnosed even it the increase wasn't 30/40 based on ALL symptoms (syndrome) Regardless, the important thing is to get her the proper treatment whatever it is. Did the Dr. at Duke tell you she has POTS?

[rmlyonsfamily]

lieze - how did you get your diagnosis of AVNRT? Do you know what the rhythm looked like? I have a few pictures of Kayleigh's bazaar rhythms.

[lieze]

They didn't know for sure that it was what it was until they got in and looked at my heart.

They had to get me going with adrenaline-it felt like a fibb I went into-I was over 200 beats per minute and it didn't feel exactly like what was happening at home-but they said it was. After the occurrence they went back and mapped it.

They do this with the EP study.

Then they did the ablation.

My heart rates prior to that looked really bad to me.

I had the printout from an episode and to me my heart looked weak, sloppy etc. and it was stopping all together.

I'm not sure if I even still have a copy of it.

I came across it and I can't even tell you what I did with it.

Since the ablation yes I've had episodes but not gone into SVT not slowed down.

It could be that K will need the pacemaker to fix her heart issue. It could be a different fix than what I had.

Personally if my heart rate was going much below 55 or so I'd opt for a pacemaker ASAP-but I am accustomed to very high heart rates. I think prior to any POTS issues I ran in the 90's most of the time. I have always been skinny and hyper and my heart beats like a little rabbit. Not necessarily a good thing.

[lieze]

So how they get in is through the femoral vein I guess in the groin...they run wires up into the heart and position them in different chambers. They must put a radioactive dye into your IV or something because you can see the heart beating and all the vessels. They place their wires by visualizing the wires and the heart on a screen that everyone in the room can see. Next they stimulate you and watch the electrical activity of the heart.

I guess they go back and see what happened and eradicate that abnormal path.

I had the most common problem women in their 40's present with and it was my cardiologist's guess.

He didn't know for sure until he saw what was happening.

But he said the procedure was a success-I just wish it would have made me normal again-didn't happen.

I left there as weak as a kitten.

[StacyRN]

Just went online and saw that K's labs from her tilt table are up... As she flatlined they drew the Norepinephrine. It was only 337 and normal is 70 to 750, says it's within limits. Lovely.. just lovely! Thought we had all this figured out.. and now, not so much!

Only 10% of POTS patients have the Hyperadrenergic type. 90% have PD (partial dysautonomic) type. Actually, 750 pg/ml is a high norepi level, most people don't go up above 500 at the most when standing (non-POTS people, that is!) Although from all the posts I'm reading about K, it sounds more like autonomic failure than POTS, due to the low heart rates, the low blood pressures... those are not part of POTS. Have they checked her for autonomic failure? Hoping for the best for her!

[rmlyonsfamily]

Stacey - noone has ever mentioned PAF, but I will ask her Peds EP doc when he gets here today. Thank you!

[Birdlady]

To add to this though, Vanderbilt University's criteria includes a NE level of 600 for POTS or OI. Their criteria is MUCH more strict than any other facility out there I've seen to date.

http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4788

"Orthostatic Intolerance/Tachycardia (POTS)

Introduction

When orthostatic symptoms occur in patients, but blood pressure does not fall as much as 20/10 mmHg on assumption of upright posture, the patient has orthostatic intolerance (OI). Additional criteria used for the diagnosis of OI at Vanderbilt’s Autonomic Dysfunction Center include an increase in heart rate of at least 30 beats per minute with standing, and a standing plasma norepinephrine level of at least 600 pg/ml. Because upright heart rate is usually greatly increased, the term Postural Tachycardia Syndrome (POTS) is also used."

The information from the source you are referencing is from 2000 and is getting pretty aged in my opinion. Surely they have learned more since then.

I believe POTS is simply diagnosed based on an increase in heart rate of at least 30 bpm from supine to upright.

From DINET website:

"Postural orthostatic tachycardia syndrome is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing (Grubb, 2000). These exaggerated heart rate increases usually occur within 10 minutes of rising."

Norepinephrine levels might be measured as part of a TTT -- elevated norepinephrine is one indicator/cause of POTS. However, not everyone w POTS will meet the criterion for hyperadrenergic POTS.

You may want to take a look at this discussion of the various mechanisms:

http://www.dinet.org/what_are_the_mechanisms_of_POTS.htm

[toddm1960]

I can't believe Vandy is lumping together OI, NCS and POTS as interchangable. NCS and POTS are two very different things, both are types of orthostatic intolerance but that last sentance: Because upright heart rate is usually greatly increased, the term Postural Tachycardia Syndrome (POTS) is also used." That's just wrong, BP should never be talked about when diagnosing POTS. No wonder we have an uphill battle with doctors not knowing what's going on.

[Birdlady]

Hmmmm I did not get that impression from what I linked. They insist NCS is a separate condition. ..."but blood pressure does not fall as much as 20/10 mmHg on assumption of upright posture"... The last sentence is saying OI and POTS is the same, yes. Their definitions are different than what we use here even on this forum/website. They include NO significant drop in BP, 30+BPM increase in HR and the elevated NE levels. Many here who have been DX'ed with POTS would not fit Vanderbilt's criteria because they have severe orthostatic hypotension. I'd say that's an appropriate response to an abnormal problem... If the BP was corrected or if the underlying cause was found for the low BP, would their POTS be "cured"?

I can't believe Vandy is lumping together OI, NCS and POTS as interchangable. NCS and POTS are two very different things, both are types of orthostatic intolerance but that last sentance: Because upright heart rate is usually greatly increased, the term Postural Tachycardia Syndrome (POTS) is also used." That's just wrong, BP should never be talked about when diagnosing POTS. No wonder we have an uphill battle with doctors not knowing what's going on.

[rmlyonsfamily]

Dr. K was just in to see her and he said regardless of the norepinephrine level, he has diagnosed her officially with POTS and NCS.

[HopeSprings]

OK, so at least you know what you're dealing with now - hopefully next they can find ways to help her symptoms.

[MomtoGiuliana]

The information from the source you are referencing is from 2000 and is getting pretty aged in my opinion. Surely they have learned more since then.

Although it is not written clearly, I think it may be saying that either or both of these (elevated NE and increased hr) indicate POTS? I don't know if this is just Vanderbilt or if this has become the new generally accepted criteria. If the latter, the DINET site should be updated to reflect this.