What Do You Make Of These Orthostatic Vitals?

[twinmom]

I had to have 3 days worth of orthostatic vitals taken at my dr's office - laying down, standing for 1 minute, standing for 3 minutes. Here are the results. They seems entirely wacky to me, but this is the first time I've had this done, so what do I know! Opinions??? It will go in with my Vanderbilt packet for my visit next month.

Day 1: laying down 98/62 hr 77; standing 1 minute 98/70 hr 71; standing 3 minutes 95/60 hr 85

Day 2: laying down 110/80 hr 80; standing 1 minute 100/80 hr 80; standing 3 minutes 110/84 hr 84

Day 3: laying down 110/70 hr 64; standing 1 minute 110/80 hr 68; standing 3 minutes 120/100 hr 64

My main problem is syncope/lightheadness/tachycardia. I'm on toprol xl 25 two times a day. When I call Vanderbilt they said not to discontinue the meds for this, which I found strange.

Any insight??

[jump]

Actually, to me those seem pretty normal. Neither your hr, your systolic or your diastolic number change more than ten points between sitting and standing, and all nine readings are within the normal range for sitting and standing. As far as I know you would not be diagnosed with POTS or NCS based on those readings alone.

Some people with POTS or NCS don't see a change until they've been standing for 5 - 10 minutes -- when you have symptoms normally, is it after you've been standing for a long time?

Can you get a tilt-table test done, or is that what you're going to vanderbilt for?

You mention you experience lightheadedness and tachycardia. You didn't experience tachycardia in the doctor's office during those three readings, so it seems like it would make sense to have the doctor see what's happening when you DO have tachycardia. Did they suggest a 24-hour ekg, or anything like that? Do you notice the lightheadedness and tachycardia at certain times?

For years, I went undiagnosed because my symptoms occurred mainly in the morning, and the doctor kept seeing me in the afternoon -- and checking my BP and pulse sitting and standing, and finding nothing. It was only when my symptoms progressed to being every-day all-day that I finally got a diagnosis, but I wish I had pushed harder to have someone look at me in the morning when I was experiencing symptoms. If you have POTS or NCS or orthostatic intolerance of any kind, it's not going to show up if you're having an a-symptomatic moment. You have to either be in the doctor's office when you're having symptoms, or have a way of recording your HR and BP at home when you're having symptoms.

Good luck, I hope you find some answers!

[potsgirl]

Twinmom,

I have to second what jump said. Those numbers are within normal ranges. Like jump, I would definitely get a tilt table test done, since that is the standard test for diagnosing POTS. Also, make sure you log your BP and pulse numbers throughout the day, to see if there's a difference in readings. How do you feel when you've been standing a long time? Do you ever faint or feel like passing out?

I too, like jump, am definitely worse in the morning.

My numbers tend to run like this:

Laying down: 95/64 pulse 60

Standing up: 68/55 pulse 130 (at 1 minute, about the same at 3)

I wish you luck and take care of yourself! Keep us updated.

Cheers,

Jana

[Katja]

I agree - those numbers seem mostly normal. What about them seems odd to you? My heart rate laying down is normally 70-90, sitting is 90-120, and standing is 115-160 (it does not decrease, the longer I stand/sit, and almost always increases by at least 30bmp). My blood pressure is usually normal at first, though sometimes I get an immediate drop, but after I stand for a while, it will often begin to fall dramatically (e.g. start out lying down at 120/80, hr 85; after standing up 110/70, hr 130; after 10 minutes I'm suddenly at 70/40, hr 120, and have to lay down to avoid passing out).

The 120/100 reading does seem somewhat "off" to me, but I'm not sure (20 is a fairly narrow pulse pressure, I think - it might contribute to you feeling lightheaded, maybe?). When do you get tachycardia? How much does your heart rate increase?

[twinmom]

During my fainting episodes, I always experience a really fast heart rate immediately prior. I had loop recorder put in Jan. of this year, and the last time I nearly passed out my heart rate was 188 as recorded on my monitor. My EP specialist thought did an EP study, but was not able to induce any arrhythmias. He is convinced it is autonomic - caused tachycardia.

I'm so afraid that I'm going to go to Vandy and they are not going to know what is wrong with me either. I've seen 2 cardiac specialists that basically say my heart is perfectly fine - just with sinus tachycardia and syncope. I had a tilt done (didn't pass out, didn't drop bp) but when they introduced the isuprel and tilted me up my heart rate shot up and I started shaking all over. No arrhythmias again, just tachycardia. I just am so afraid of someone else telling me either "there is nothing wrong" or "we don't know what is wrong". I know something is wrong because I don't feel well like I used to. It can't be normal to feel this lightheaded and tired all the time.

Ok, sorry to whine. I'm just frustrated. I was just hoping my vitals would show something, and obviously they aren't.

[jump]

Hmmmmm. Well, if you experience a racing heart and you had a sinus tachycardia during your TTT, then that sounds like POTS. When the cardio doctors tell you they can't find anything wrong, what they mean is that there's nothing STRUCTURALLY wrong with your heart and no dangerous arrythmias, which is good -- they don't mean "there's nothing wrong" as in "everything's normal." If you had something structurally wrong with your heart, you probably wouldn't have autonomic dysfunction, you'd have a heart condition. So even though those messages sound conflicting, what you've described with your TTT and loop recorder sounds like POTS.

If this has started happening recently, perhaps you just have periods of time when your body doesn't experience these symptoms, and that would explain your normal readings at the doc's. Perhaps you experience tachycardia after standing for longer than three minutes, too, which wouldn't be uncommon for POTS.

"Just tachycardia" can make a person feel pretty lousy. I have POTS, and as far as my cardio is concerned, I "just" have sinus tachycardia upon standing. But that tachycardia means I'm exhausted all the time, I have difficulty doing my job, and I have a constellation of other autonomic problems not related to my heart rate (insomnia, difficulty digesting, excessive thirst, exhaustion, chronic pain). So, again, when they say "just tachycardia," probably what they really mean is "phew, you're not about to have a heart attack" -- they probably don't mean there's nothing wrong with you. It's all relative. Sometimes, with POTS, doctors are happy to rule out really dangerous conditions since POTS symptoms look a lot like life-threatening heart disease.

But, there are treatments for POTS that should hopefully help with the fainting and with the feeling yucky. If your doctors decide on that diagnosis, the next step should be to find things that help you. It's not like they're going to say, "Oh well, just a little tachycardia," and send you home with no help. Unless they're crummy doctors, which is very possible, in which case you'd need to find a new one.

[twinmom]

Jump, thanks for taking time to reply. That's one of the reasons I'm looking forward to my Vanderbilt visit next month. I figure if anyone will be best equipped to get to the bottom of what is going on it will be them. It's just scary, as I'm sure you and others know. I just want some clear cut answers - unfortunately, it doesn't seem like there are many in dealing with dysautonomia!

[ajw4790]

Hi,

Could it be that your meds are just working that well to keep your vitals normal? I too do not see anything weird with your vitals, they look normal. Maybe they said to go off the meds because they want to see what you look like without taking the meds.

If tachycardia is your main issue and it is not always orthostatic related, maybe you actually fall more under the umbrella of inappropriate sinus tachycardia???

I hope you will be able to get answers at Vandy!

[flop]

Being on meds will change the results of orthostatic tests, it may be that without the toprol you would have had a much higher heart rate.

Vandy should be able to help you. I am a little surprised that they don't want you to stop the toprol before going. Are you having just a consultation or are they going to do tests while you are there? are you going for a day or for several days?

I would write / fax / e-mail your consultant's secretary giving a list of your current meds and asking "do you want me to stop taking any of these before I come?". If you send a written question it is more likely that the secretary will check before replying. It is worth the extra check to make sure that you are ready for any tests they want to run.

Good luck with the visit,

Flop

[erikainorlando]

Hi.

I have to agree with Flop.....my EP told me to stop taking my toprol 2 days prior to my TTT. I thought I would die. But he told me that the test results would be altered if I was taking the toprol

Althoug, my hr still rising almost 30 points on the toprol when standing be can be within mormal limits. Say lying down it would be 55 and standing 85. Off the toprol it would be say 85 lying down and 140 standing. For wahtever that is worth!!

Anyway, I hope you find your answer. It is really awful to feel so bad and not really know what is going on or worse yet to be told that there is nothing wrong!! For 2 months my PCP told me that there was nothing wrong....(kept taking my hr when I was sitting). She told me to go to a therapist. I told her I would love to go but I was just too sick to drive!!!!

Good Luck!!

Erika

[erikainorlando]

Hmmmmm. Well, if you experience a racing heart and you had a sinus tachycardia during your TTT, then that sounds like POTS. When the cardio doctors tell you they can't find anything wrong, what they mean is that there's nothing STRUCTURALLY wrong with your heart and no dangerous arrythmias, which is good -- they don't mean "there's nothing wrong" as in "everything's normal." If you had something structurally wrong with your heart, you probably wouldn't have autonomic dysfunction, you'd have a heart condition. So even though those messages sound conflicting, what you've described with your TTT and loop recorder sounds like POTS.

If this has started happening recently, perhaps you just have periods of time when your body doesn't experience these symptoms, and that would explain your normal readings at the doc's. Perhaps you experience tachycardia after standing for longer than three minutes, too, which wouldn't be uncommon for POTS.

"Just tachycardia" can make a person feel pretty lousy. I have POTS, and as far as my cardio is concerned, I "just" have sinus tachycardia upon standing. But that tachycardia means I'm exhausted all the time, I have difficulty doing my job, and I have a constellation of other autonomic problems not related to my heart rate (insomnia, difficulty digesting, excessive thirst, exhaustion, chronic pain). So, again, when they say "just tachycardia," probably what they really mean is "phew, you're not about to have a heart attack" -- they probably don't mean there's nothing wrong with you. It's all relative. Sometimes, with POTS, doctors are happy to rule out really dangerous conditions since POTS symptoms look a lot like life-threatening heart disease.

But, there are treatments for POTS that should hopefully help with the fainting and with the feeling yucky. If your doctors decide on that diagnosis, the next step should be to find things that help you. It's not like they're going to say, "Oh well, just a little tachycardia," and send you home with no help. Unless they're crummy doctors, which is very possible, in which case you'd need to find a new one.

Hi.

I just wanted to say a big "THANK YOU"!!! It was very validating to again hear the "Just tachycarida" can make a person feel pretty lousy!!! I am so debilitated. Even on the toprol which pretty much keeps my hr normal...I still feel very lousy!!!

Can I ask what kind of chronic pain do you have? I havfe had a lot of pain with this. My muscles ache at times and my joints hurt. That is in addition to the chronic terrible chest pain I have. Basically.....I feel many times like I have been run over by a bus!

Obviously I am not trying to win the"ain't it awful" award but it is just so nice to be validated. It is almost as if you can survive anything if you have compassion and support.

Thanks again ...I needed to read that tonite.

Erika

[Sunfish]

flop & others -

i'm too sleepy to write a more thorough response at the moment but did just want to mention that vandy's directive to not stop meds is not necessarily for the visit/ appointment/ consultation but rather for the at home (or in office) readings that patients are asked to record & send it in advance. i obviously can't speak for anyone else's situation - including twinmom's - but know that myself & many others who have been to vandy were told to stay on our meds for pre-admission paperwork, application, etc. but were indeed asked/ told to be OFF all ANS-related meds for our actual visits to vandy. so that may be the scenario in this case as well....

hope this helps clarify,

melissa

[jump]

Can I ask what kind of chronic pain do you have? I havfe had a lot of pain with this. My muscles ache at times and my joints hurt. That is in addition to the chronic terrible chest pain I have. Basically.....I feel many times like I have been run over by a bus!

I understand completely about needing to feel validated -- I think that's the thing that this site has helped me the most with, I feel understood here with all these people who really GET it.

I have a lot of pain, too, and for me it's a crushing chest pain mostly. Sometimes it spreads to my neck and shoulders -- but it's always a "hit by a bus" feeling for me and not so much joint pain or muscle aches. It's more like my ribcage has been bruised or crushed.

If you have joint pain, have you been tested for lyme? Lyme disease is a common trigger for POTS, and one of the hallmark symptoms is joint pain.

Never feel bad for "whining" - it's not whining to tell the truth about your lived experience, and we all need to air our grievances aometimes and we all need to be understood. It's part of what makes this board so great!!!

take care,

jump

[lotsicker]

Hi Twinmom,

I am a twin mom too. I think your readings look normal. I know that when I have the same test done that you have, my heart rate goes from 69 to 99 to 120... This is ALL THE TIME. The only thing that helps my HR is beta blockers.

I think what you have is cronic fatigue syndrom with fibermyalsa (spelling?) That would explain the passing out, pain, feeling sick etc. Often having twins can drain your system so much that it can't recover. CFS is a VERY real and VERY disabling syndrome. I think you should research this and see if your doctors can confirm.

You are not crazy...I just think you have something other than POTS. With POTS, you can't do anything without a rapid HR, sometimes even laying down doesn't aleive it. As an example, I had the stomache flu last week and even resting my heart rate stayed at 100 to 109. Getting up it went to 120 to 145. I felt like I was dying. Today (a good day), even on my long acting beta blocker, I can feel the palpatations when I vaccum or clean the bathroom, lift the twins etc. Its always there.

Keep me posted as to the CFS and fybermalasia