Question from Newbie

[JR2000]

Hi All:

I am new here, and really appreciate the opportunity to tap into your experiences and knowledge. My main question is how to tell the difference between inappropriate sinus tachycardia and POTS. I seem to have overlapping symptoms that could include both. I recently had a stress echo. which was declared "normal". My heart rate shot up very quickly (over 150 in less than a minute on the treadmill), and I was out of breath and a little lightheaded. Echocardiogram looked mostly normal (very slight leakage of mitral valve - declared to be insignificant). I am wearing an event monitor. I have always had a rapid resting heart rate and it doesn't take very much activity for it to increase heart rate substantially (going up one flight of stairs as an example). My heart rate increases when crouching to standing (in the doctor's office it went from 85 to 140 when going from crouching to standing -- though this was ignored as well). I have fatigue and exercise intolerance. I have always had pretty low blood pressure (around 90/60).

Any input anyone may be able to offer would really be appreciated. I'm not sure where to go from here. I'm supposed to see the cardiologist again in January, but he doesn't seem to really think there is anything serious going on.

Thanks in advance,

JR

[MomtoGiuliana]

I believe the defining difference between IST and POTS is a positive tilt table test. If you have a + TTT, it would be POTS.

Can he order one prior to your next visit with him?

Katherine

[Merrill]

I agree w/Katherine--you need to have a tilt table test to diagnose POTS. I had the same tests--and results--as you did (in terms of the stress echo, rapidly rising heart rate etc, and the same symptoms--fatigue, exercise intolerance, tach, etc.) POTS was the diagnoses after the tilt... your heart rate needs to go up 30 beats or more in the first 10 minutes of being tilted from flat to about 70 degrees upright. Blood pressure sometimes changes, sometimes not; depends on the person. But bp is not necessarily an indicator of pots; they're looking for the T in pots, the tachycardia.

This event monitor you're wearing--is it also doing a basic 24 hour ekg, which you'd get if you had a 24 hour holter monitor? That was another test I had--and my docs went back to look at all the tapes to make sure that it WAS NOT inappropriate sinus tachycardia by looking at the rate overnight, during sleep. With IST, the heartrate stays high all night. My heart rate went into the 70s, so they ruled out IST that way. (At least this is what my cardiologists explained to me. These are definitely questions to talk to your docs about.)

In the meantime, drastically up your salt and fluid intake and start wearing compression hose or thigh highs (30-40 compression). This is what I have done, and the hose especially are a mandatory part of my day.

(PS as far as anything "serious" going on... it all depends on how well you're able to manage your symptom. There are meds you can take--it's all a matter of experimentation. I'm doing OK w/out em, but I've been managing these symptoms for 30 some years.)

Good luck,

Merrill

[JR2000]

Thank you borth for your responses.

Merrill:

I haven't had Holter, the office didn't have any of them available at the time. What I have is an event monitor which only records when I press the button to tell it to record (it records 1 minute total). No suggestion of a tilt table test. I don't know if I have the right doctor as he doesn't seem to be really interested in doing much in the way of investigation, and is just having me follow up in three months. With POTS, I know that blood pooling in the lower extremities is discussed; are there any symptoms associated with this blood pooling? I may have to find someone else.

Thanks again,

JR

[MomtoGiuliana]

JR

Many cardiologists are not familiar with POTS (my experience). You will need to see an electrophysiologist, probably, to get a diagnosis.

Yes, there can be symptoms associated with blood pooling below the heart, besides tachycardia. Dizziness, fatigue, weakness, breathlessness, lightheadedness, and other symptoms.

Good luck and keep asking questions if you need to!

Katherine

[Merrill]

As far as blood pooling and symptoms--some people report purpling of the extremities--you know, feet and lower legs look purple--hands too. Mine only do that sometimes...but I so rarely see my feet anymore! Only in the shower, and when I have to wash my hair, which takes a lot of energy, I do it seated. MUCH easier that way, and keeps the heart rate a little lower.

My blood pooling symptom--which I didn't even realize was a symptom until diagnosis, is that my legs felt like they weighed 500 pounds--very very heavy and sluggish and I didn't have much energy for walking. The compression hose have for the most part SOLVED that problem. (At least the heaviness part; still don't exercise much. Yoga. And I work full time and walk around some during the day.)

Get the hose. Get a new doctor. Get a holter monitor test (to help rule out IST) when the office gets a return, and get a tilt table test! That's my advice for the day.

[yogini]

JR,

Welcome to the board. You sound a lot like me. I have always had very low blood pressure and a somewhat rapid heart rate. My heart rate increases a lot at the littlest activities, such as rolling over in bed or drinking water. I wonder whether I have IST or POTS, but my understanding is that the treatment is pretty similar. I take florinef to increase my BP and atenolol to lower my heart rate, and they have really helped me. Did your symptoms appear all of a sudden, or have you had them all along? If your symptoms are affecting your ability to function on a day to day basis, then I would encourage you to consider seeing a POTS doctor and/or talking to your cardiologist about trying medication soon.

Good luck.

[JR2000]

Thank you all so much for the information. It is soooo great to talk to other people who have these problems. My background is in the medical area, and so I do a lot of research, and have suspected that there has been something going on for a long time. I have lived with these symptoms for about 20 years or so, but have never had a doctor think anything of them, and they seem to be getting a bit worse. I also have IBS (possibly Crohn's disease but this has never been confirmed), migraines, endometriosis, and biliary dyskinesia (basically the muscular system involving the liver and gallbladder spasms and doesn't work quite right). I do have what looks like a lacy purplish tone to my arms and legs (I believe the medical term is livedo reticularis), but the cardiologist didn't have anything to say about this either. I don't have a feeling of heaviness in my legs and no swelling, but have had this lacy reticular appearance and my hands and feet are frequently cold.

It always makes me feel like I'm 90 when I'm winded and my heart is racing with simply going up our one flight of stairs in our home, or as someone here mentioned, just turning over in bed. I've always just brushed aside all of these cardiac symptoms to simply being out of shape when I know that isn't really true as I've always been active. It just takes so little to drive my heart rate up, and make me feel like it is racing. I think the one key thing I have learned here is that your blood pressure doesn't necessarily have to go down when standing to have POTS. The technician who did my stress echo. (who was more knowledgeable I thought than the doctor was) was concerned about the spike in my heart rate when I went from crouching to standing (85 to 140), but when she saw that my blood pressure didn't change at all, I think she sort of just dismissed the heart rate change.

I guess I am just so tired today that putting out the effort to try and find another doctor familiar with this is feeling overwhelming at the moment. I checked the site and there isn't one listed near where I live, and I have a feeling that it is probably going to be a challenge. I can try and find an electrophysiologist nearby though.

Again, I so appreciate your input and information and support. It gets so exhausting to have to be your own doctor and to have confront doctors with telling them what tests to run.

JR

[Merrill]

JR, I just had to post again to tell you that you describe yourself/your symptoms EXACTLY the way I describe mine (except I don't have the liver/gallbladder problems or the migraines--my endometriosis was removed during surgery for something else last year).

Tell us where you live; someone here may be able to recommend a specialist that isn't yet listed on the physicians list and that wouldn't be too far away.

Re: docs not talking to you about your symptoms--I remember several over the years saying, "Does your heart always beat so fast" and I say "yes" and they move on. I guess as long as it's beating, right? Truth is, the old ticker is just doing what it needs to do to get and keep the blood pumping up to the lungs and brain, and no damage is being done (presumably you've been cleared of other cardiac problems).

Check out the "what helps" page on this site... you may learn a new trick or two. (Even if you don't have the heavy feeling in your legs, the compression hose helps constrict the veins...)

merrill

PS If you have a sleep partner, have him/her push the button on your event monitor while you're asleep! Would that work to find out your heartrate while you're sleeping?

[JR2000]

Hi Merrill:

Thank you so much for posting. It is amazing when you find someone who has almost the exact things going on!! I'm glad you don't have the gallbladder trouble though. That started for me about two years or so ago, and I am largely able to control it by avoiding certain foods. I really liked your comment about doctors moving on as long as your heart is beating. How true.

I live in the Orange County area of Southern California. I guess what is so frustrating is I have had to go through this with my other problems as well; trying to find a doctor who knows what's going on. Getting diagnosed with the endo. took years and when I finally had surgery for it, I actually finally felt relieved because my pain finally had a name that I could pin to it. I think we all have intuition about our bodies and what is going on with them, and doctors need to learn to listen better!! I notice this doctor I have seen asks me the same questions over and over and over, and then repeats back to me the wrong information I just told him several times. I'm also usually unimpressed when a doctor takes calls in the middle of an appointment.

Thanks again for posting. It really helps to know you all are here.

JR

[ETOLY]

Hi JR,

UCLA does have at least one doctor that works with dysautonomia patients...although I know nothing about them. However, see

http://www.neurology.ucla.edu/faculty/YanGoF.htm

I guess he is a neurologist, but he may be able to help you or ask for some referrals closer to the Orange County area who may be able to help you.

Etoly

[JR2000]

Thanks Etoly:

I actually haven't heard the greatest things about her from patients on other boards, but calling them to try and get a referral closer to O.C. might be a good idea.

JR

[Gena]

JR2000,

Just wanted to say I'm glad you found this board. The support and information you find hear is great. I'm a real proponent of internet research. I had dx'd myself with POTs before the doctors did. My BP dropped when I stood up for the first few weeks when my symptoms were really bad, but now it doesn't...I just have the heart rate change like you do.

I read that you have IBS and possible Chron's....about 4 years ago that's what my GI doc tried to tell me I had, but I kept pushing for more tests and trying new docs, b/c I had a feeling it was something else. I was finally tested for celiac sprue disease, and lo and behold that's what it was. Untreated celiac can lead to all kinds of problems in other areas of the body, including gallbladder. Just curious if you've ever had a blood test for celiac or an endoscopy done of your small intestine?

Anyway, good luck with finding a good doctor. I think that's one of the most important, yet difficult things to do!

Gena

[JR2000]

Hi Gena:

Thank you for your reply. It is so frustrating sometimes to have to do so much on our own, isn't it? Anyway, years ago when I first started having GI problems ibefore they had antibody testing the subject of celiac sprue came up for me with a doctor I was seeing and I went on a very restricted gluten free diet for over a year. At the time they weren't too quick to do small bowel biopsies. The diet was horrible but I was really good about following it, and had no improvement in my GI problems. My doctor now thinks that I have neuromuscular problems with my GI tract since so many parts of it are affected. I am going to undergo capsule endoscopy (where you swallow the camera that is the size of a vitamin) so that we can get a good view of my entire small intestine. It will be interesting to see what that shows, if anything.

Again, thanks for your input. It is really helpful to find others who share the same challenges. I moderate several message boards myself on endo. and bowel problems, etc., and the help that people get from them is immeasurable.

JR

[mamah61]

JR2000,

I have IST and NCS. My tilt was positive in that my bp dropped. They didn't say what my hr did. There are 2 kinds of IST, one of them your hr is always high and the other, your hr is normal and can raise with any exercise. I have the second kind myself. My resting hr is in the 60"s and 70"s

Mamah

[JR2000]

Thanks for your reply. It makes it all so complicated to try and get it all sorted out when there is so much overlap between problems. I guess the treatment regimens are similar though, so maybe making the distinction isn't all that important.

Thanks again,

JR

[Merrill]

Actually, JR, I think there are a few differences in treatment options. For example, I'm pretty sure I've heard that ablation is a treatment for IST, whereas it's a TERRIBLE idea if you have POTS (and not IST). So it still may be worthwhile for you to have that holter monitor test. Just throwin' that out there for ya--and in the meantime, see how you do w/compression hose and lots o' water and salt!

[JR2000]

Merrill:

Yes, you are right. I actually seem to have located a cardiac electrophysiologist which is the next stop to try and figure out a dx.

How are you doing?

Thanks for your support and input.

JR

[Merrill]

JR, it sounds like you're not only on the right road but you're also heading in the right direction!

I'm doing well, thanks. Eating chocolate cake tonight in advance of some dental work tomorrow. (I'm going to try to remember to write down the name of the anaesthetic he uses and I'll post it here...it doesn't last long, and typically doesn't make my heart race like some of the other kinds of novacaine.)

Cheers,

m

[JR2000]

Hi Merrill:

I know what you mean about the anesthetic. I think it is because dental anesthetics contain epinephrine, which we are probably much more sensitive to. I look forward to your update. Chocolate cake sounds great -- I'm having a craving now.

JR

[Merrill]

JR, you saw my other post, yes? Just in case, it's Carbocaine 3%...

[JR2000]

Merrill:

I didn't see your other post, but I will definitely look for it. Thanks!!

JR