HeartRate Importance

[acesew]

I am 24 and for the past  7-8 years have had health problems that no doctor has been able to figure out.  I faint very easily, several times a week.  I am very lightheaded most of the time.  I am constantly tired and hurt.  I am also either really hot that I am pouring sweat or freezing to death.  I have a neuroligist that is considering the fact that I have dysautonomia.  My question is to do with heart rate.  Normally, my heart rate is 55-60 bpm.  With the slightest activity and even with no activity, my heart will jump up very quickly to 100 bpm.  Most of what I have read deals with people who have a very fast heart rate (around 130 bpm).  Is there anyone else that is like me or is this something else....????
Thanks

[gdino]

I have a major changes in my heart rate with any kind of movement also, even when lying down.  Off all medications my heart rate will increase 30 bpm or more with just turning my head.  I have been diagnosed with dysautonomia, the hyperadrenergic form.  I have very high adrenaline levels, over 2000 off of medications when standing, and my doctors did look for a pheo but did not find one.  Your doctors may want to check your adrenaline levels when standing also.  Good luck.

[Heiferly]

If you're looking for a dysautonomia clinic, I really hope you don't live out West.  (Not being sarcastic, a lot of our newer members are in that region of the country and we've confirmed that there aren't any fully equipped dysautonomia clinics in that region.)  The main hospitals that people go to for dysautonomia clinics are Mayo (Rochester location only), Cleveland Clinic (Cleveland, Ohio location only), and Vanderbilt (Nashville).  There are also clinics in New York City, but none of our members have mentioned being seen in NY so we have more limited information on those.

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196

[supineallthetime]

Yeah... screening as best they can for a "pheo" sounds wise.  There are even other "hormone secreting benign tumors" out there too though I think they get quite rare compared to pheo's.  This article gives plenty (too much) info on pheo's:

http://theoncologist.alphamedpress.org/cgi/content/full/13/7/779

Also, I have heard of people with dysautonomia fainting even when laying down... might not be most common thing but it can happen to some.

[acesew]

I am not sure about the pheochromocytoma test.  This new doctor may have done that when he pulled blood a couple of weeks ago.  When all of this first started, I began going to a cardiologist.  They even implanted the loop recorder.  That is how I know that my HR jumps like it does even when lying down or sitting.  The thing at that time was is that they didn't think that would be causing me to faint and they would never believe me when I would tell them that some of these episodes that I recorded happened with me sitting or lying down.  
I will check with my doctor about the blood work.  This new doctor is the one that suggest dysautonomia.  I had never heard of it until then. So I believe he will help me get to the right place.  He told me on my last visit to read up on it and when I came in we would discuss it.  That he would most likely have to send me to a clinic that specialized in it.

[LivingInHope]

Also, have they checked your CBC, and not only your H&H in that, but also your iron, T.I.B.C. (total iron binding capacity) and ferritin (iron stores) levels?  Because iron deficiency anemia can cause tachycardia (or make it worse, if you have it already).  I had worse tachycardia when my iron was low, even though my CBC was normal before.

[Heiferly]

I agree that you should probably have a pheochromocytoma ruled out if you haven't already, especially since you're having the jumps in heartrate sitting or lying down too.  If that comes back negative, are your doctors willing to treat you for the syncope/dysautonomia based on your symptoms and the results of the poor man's tilt?  If not, the next step since you faint quite frequently but (if I'm understanding you correctly) they were not able to replicate it on a tilt table could be holter monitoring and ambulatory blood pressure monitoring.  Being that you faint several times a week, I would think they could catch at least one faint non-invasively this way.  The other option to investigate unexplained syncope is implantation of a loop recorder for more long-term monitoring (this will monitor the ECG but not blood pressure).

I would hope that either they're willing to treat you based on the information they already have, or they can gather more information just with ambulatory monitors if they're not quite convinced.  Either way, it seems you would benefit from treatment to reduce your frequent syncope.  

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Treatments/show/171?cid=196

[LivingInHope]

Since your heartrate can jump like that when sitting or lying, has the doctor run a plasma free metanephrines fasting blood test on you to try to rule out pheochromocytoma?

[acesew]

Thank you both for answering.  Here is the crazy part on my HR.  I have had 2 tilt tables done and have been negative on both.  But, when I was in the office with this new doc, he did a "cheap man's" tilt table.  (took bp and hr lying down and standing)  He said just from that, there was way too much variation.
I just wanted to see if someone else had the problem with their HR like mine.  
Heiferly, the odd thing about my HR is I can be sitting or even lying down when it will jump up even as much as 40 bpm.
Thanks.

[Heiferly]

Absolutely correct, supine, an upward increment of greater than or equal to 30 bpm paired with symptoms of orthostatic intolerance meets the criterion of POTS, regardless of the absolute value of the heart rate.  I highly recommend you get a tilt table test, acesew, as that can confirm the diagnosis of dysautonomia/POTS.  You may need to go to a major teaching hospital to access one of these tests, if you are not already accessing your specialists through one.  These tests are most often done through cardiology departments, but occasionally you'll find hospitals that do them through neuro as well or instead.  

There are some great basic articles on POTS here that explain the diagnostic criteria that we just discussed as well as the mechanism of the disorder; you will find the syncope articles relevant as well as you say you faint often.

http://www.medhelp.org/health_pages/Neurological-Disorders/Further-Reading-on-Dysautonomia/show/696?cid=196

[supineallthetime]

To my knowledge, at least for POTS, a 30bpm increase going supine to standing counts (or on tilt test, really)... so for that condition at the high rate isn't necessary (it isn't part of the definition).

I personally don't have very fast heart rate... 120 is the highest upon standing but usually it's more like 100 to 110 now that I keep overhydrated.  However, I often have bradycardia (low heart rate... low being defined as below 60).  For example, when bad, my HR might go from the 40's instantly up to 110 or 120 simply from standing up (no other exertion).  Or if I'm doing everything cautiously, keeping overhydrated (extra salt and used to use fludrocortisone too) then my increase will tend to be less but still pass the 30bpm criteria at most times.

Treatment approach might be affected by these circumstances, but I have not personally heard that it indicates a different suspected cause or a different condition... but I am not an expert.  Just getting used to managing this stuff myself!