Alex.

Breathe deeply. I am not a doctor and I am not diagnosing by any stretch of the imagination but just trying to help.

I am sure you will find some helpful information to help you with your issues in this forum. There are some great people and wondrous amounts of valuable info. Try to relax a bit and find some peace. It is very scary and very overwhelming but you are alive and we are all going thru similar things.

You are not alone and we will all try to help

I sympathise. Even recognize some of your symptoms. .  I´m no doctor. but did someone ever consider Wolff–Parkinson–White syndrome although I quess this would have been noticed by a cardio doc. or POTS maybe.

ANA can be falsly positive my doc told me, so i dont know what yours mean.
But I´m no doctor and dont wanna play one. So i really dont know. I´m just trying to let you know i´ve read your post and I do feel for you.
hang in there. Hope you get your answer soon.

Ok, so my instinct wasnt that of with what it looked like.

So you have POTS.
POTS is POTS.  anxiety is anxiety. offcourse you can have anxiety due to your symptoms. so yes it can be anxiety that elevated heart rate. But you have POTS too.. so I can understand you´re not fully content with the diagnose anxiety for the rest of your not so common symptoms  .  your story about anxiety I fully agree with. I´m a 39 year old man. And Everything now is given the anxiety title.
I just wrote in another topic about that anxiety label thing.


hang in there

Okay, I've read your posting and concerns. It is more rare for patients with orthostatic intolerence (POTS) to experience symptoms nocturnally, whereas patients with dysautonomia do in fact experience symptoms regardless of body position. Based upon your description, an actual diagnosis of POTS would only be supported by a limited portion of your symptoms and test results.

Your presentation would also be inconsistent with Wolf-Parkinson-White syndrome.

I would be curious to know that if at any point during your evaluations in the ER whether clonidine was administered and if so what impact it had upon your symptoms. It's important to note here that patterns which are similar to dysautonomia but do not rise to the necessary clinical level for diagnosis often occur in patients idiopathically, meaning that no specific underlying cause can be determined. I would also ask here how your doctors specifically ruled out anxiety/panic disorder since it is a diagnosis of exclusion in such instances? In other words, in the absence of an underlying organic cause, a diagnosis of exclusion is warranted in instances where the exclusion can cause similar symptoms and yet have no organic or pathological basis.

It's critical here to understand that common situational anxiety is incapable of inducing dysautonomic-like symptoms and many patients become frustrated when healthcare professional suggest it as a possible cause. Patients often respond by exclaiming that the only anxiety they may be feeling is due to the very symptoms being cited as the possible cause and they are frustrated because they feel that physicians are falling short of their search for the true cause, leaving the patient to continue wondering.

When anxiety reaches specific levels, it can induce sometimes very remarkable changes in physiology and yet the patient does not feel any symptoms that would be consistent with features of anxiety. In other words, at certain levels the nature of anxiety becomes associated with physical, rather than cognitive or emotional, manifestations. It's important to remember that the central nervous system, which is most influenced by the type of anxiety being referred to here, is the direct conduit to every physiological system in the body and its variable impact can produce a very broad range of physical manifestations which do not have an underlying organic cause. The reason that this similarity exists is that true disease impacts the very same nervous system, with the basic difference being that the underlying disease is evident on diagnostic tests. In instances where such tests are negative across the board, patients typically come away with the notion that the tests are either too insensitive to detect the problem or that the right type of test has not been performed which would be able to confirm their suspicions.

It is both through innate human nature and social development that people directly associate physical symptoms with physical disease and this rule is somewhat accurate to a point depending upon the nature of the illness, disorder, syndrome or disease. It is not, however, universal by any means whatsoever and there are countless cases of patients with blatant physical symptoms in the absence of underlying organic cause.

True dysautonomia as a consequence of underlying neurological disease has a presentation that is universally progressive. While there some neurological diseases which demonstrate alternation between remission and relapse such as Multiple Sclerosis, the supporting diagnostic tests can easily confirm whether such a disease is present.

In other words, if you are experiencing periods of relief from symptoms associated with autonomic function, it is not likely at all to be associated with actual neurological disease because the progression of damage cannot reverse itself in disease processes which impact autonomic function. It is also the case that some latent forms of neurological disease have a very insidious onset and abnormal clinical findings can exist for some time before the disease has reached a state where it can be identified or at least differentiated from other causes.

I say all of this to tell you that true underlying neurological causes for your symptoms is rare and the vast majority of such presentations is entirely benign in nature. Again, non-pathological causes are generally within the realm of diagnoses of exclusion and anxiety is on that list, but again the confusion arises where the specific type of anxiety is thought to be the cause.

I would certainly be willing to entertain any supporting information you wish to provide, but based upon what has been depicted in your postings, the likelihood that an underlying organic cause is present and undetected is extremely remote. In fact, the odds would be greater for you to win the lottery three times in succession.

By contrast, the typical onset for the particular type of anxiety referenced earlier is associated with life-altering events which can range from death or terminal illness of a loved one, divorce, loss of a career position, serious personal conflict with another individual which regularly induces ruminative anger, etc. Many people do not realize the impact that these events have on their lives because the actual expressions of such impact occur in unrecognized or unexpected forms and subsequently are not considered to be associated or relevant.

Your healthcare professionals have conducted extremely in-depth tests and if actual disease were present, it would have been discovered. It's also practical to mention here that fear of disease as a consequence of these symptom patterns can absolutely cause or intensify the very symptoms of concern. Again, the nervous system is very widespread throughout the body and influence by factors other than actual disease can very easily produce a very broad spectrum of physical symptoms.

We can speak more if you wish, but my impression at this point is that your symptoms are not due to underlying disease or condition of some type.

Best regards,

Rutheford Rane, MD (ret.)

An extra piece of info I just feel might be helpful.
I just received the results of another 48 h Holter monitor. This time around it recorded 18 episodes of ventricular tachycardia - I won't even mention the number of PAC's or PVC's, or couplets etc as I am not worried about those - I am aware they happen, I try to ignore them and most time I manage, but V-tach is something new for me. It's quite interesting to note that of the 18 episodes of V-tach, 14 happened within 60 minutes - mid day. I had no particular symptoms while this happened, and I know for a fact that I was at home, in my office, sitting down, reading.
Again, I'd really appreciate your input Dr Rane.
Thank you.
Best,
Alex

Dr Rane,
Thank you so much for taking the time to read my story, and for your willingness to help me.
To answer your questions:
I have had 2 tilt table tests. I only have the printout of the first report (the one I had in January) and I will summarize it here: resting heart rate of 96, which showed a marked increase of 51 bpm on immediately assuming upright posture. This was associated with a mild decrease in BP. At approximately 6 minutes during the HUTT the patient experienced a syncopal episode with a type 1 vasovagal mixed response. At the time of the syncopal episode her heart rate was 54 bpm. Her beta sensitivity testing was normal, her intrinsic heart rate was 104 bpm with a predicted intrinsic heart rate of 98 bpm, She had decreased alpha sensitivity.
For this test I had to go off all medications – I was on 2.5 mg bisoprolol every other day. I stopped it cold turkey 3 days before the test. While on the bisoprolol (July-January) I was unable to tolerate the initial dose prescribed – 5 mg so the Dr decreased it to 2.5 mg a day, and then as I was still complaining of lightheadedness (I normally have low BP and the bisoprolol was decreasing it even more) the Dr suggested I take 2.5 mg every other day. I am adding this info as it might have some significance.
The second tilt table test happened about a month ago, and according to the Dr who supervised the procedure I no longer fit the criteria for POTS – again, I apologize but I don’t have the printed report. This time around I did not have to discontinue any of my meds (propranolol 10 mg bid, florinef 0.1 mg bid, prostigmin 30 mg/22.5 mg/15 mg at 8AM, 12PM and 4PM, clonazepam 0.25 mg bid + supplements vit D3 3000IU, iron 300 mg, vit C 500 mg, potassium 2400 mg bid, aside from this I am supposed to have an intake of fluid of at least 4 liters a day, and eat a minimum of 10 g you read it right 10 g = 4 teaspoons of salt – I don’t do that as my stomach can’t take all that salt, I tried 5 g for about a week, and now I’m down to probably 2-3 g a day, sometimes even less than that.
I did have two episodes of elevated HR and BP “caught” in the hospital when several Drs were around – The longest episode I had lasted about 2 hours, I was in the hospital that day, a couple of days before my first tilt test, it was my 2nd day off the bisoprolol, my heart rate was in the 150-160’s and I was only given a one liter bag of saline an ativan (1 mg) and about ½ hour later a clonazepam (0.5 mg). Needless to say that I fell asleep shortly afterwards, but my HR continued to be elevated. I believe my highest BP then was 150/95, not 100% sure.
The latest one - I don’t know what my BP was, but my HR was 220 and all I was given again was a one liter bag of saline IV, and one of the Drs vigorously massaged my carotid artery (I was told not to attempt that at home). In a matter of minutes my HR dropped to about 100bpm and stayed elevated for the rest of the day despite being in bed trying to rest/relax. Later on I was told by my POTS specialist that it was an episode of atrial tachycardia, it could have happened to anyone and I have nothing to worry about. I was (again) not given any medication during this episode.
One other thing that might be worth mentioning here is that most of these episodes are quite short in duration – they can last from seconds to minutes, so unless I am in the hospital/Dr’s office already, by the time I’d get to a hospital the episodes tend to resolve by themselves.
I do believe that the POTS diagnosis is somewhat justified – given the tilt table test results from January. Plus, I am supposed to monitor my BP and HR 4 times a day and communicate the results to my specialist (he suggested I should do this as he was trying to adjust the medications to the proper amount for me – it took a bit of trial and error. He asked me to continue to send him the numbers as he is still trying to find some patterns). Upon assuming upright posture, I can definitely note a significant increase in HR – at least 20 bpm, while the BP drops slightly. Sometimes my HR increases by as much as 40 bpm, particularly first thing in the morning. I was told that these are findings consistent with POTS. Plus my Dr keeps telling me that he has proof that the reason behind my POTS is hypovolemia (he did not specifically told me what proof he has aside from my 24h sodium urine, but based on what I have read I have never had a test to determine my blood volume).
The ECG’s and echocardiograms that I have had excluded mitral valve prolapse as well as WPW, and I was told time and again that my heart is perfectly normal, so I don’t think I need reassurance in that direction. What my Dr is looking for at this point is finding a possible cause for these spikes in BP/HR and the whole range of symptoms that I am still complaining about (body aches, whole body itches, head pounding, weakness, chest pain).
Regarding the Holter report. I only had a preliminary version of it in front of me – no Dr’s notes, so last week I got the whole story. According to my POTS specialist and the report I have in front of me: predominant rhythm – normal sinus rhythm, min HR 55, max HR 163. Less than 1% of total heart beats were in tachycardia zone with a HR greater than 120 bpm. Rare isolated supraventricular premature complexes with two supraventricular runs totaling 19 beats. No evidence of sustained SVT or AFib. No ventricular arrhythmias. No significant pauses or blocks, no significant ST segment changes. One run of junctional rhythm – 12 beats. The highest rate – 163 bpm # beats 689, lasted 54 sec, the rhythm was sinus tachycardia. # PVC’s 234, # couplets 17, # bigemini 2, highest rate 81 bpm, # beats 5, lasted 3 sec, 0.4 % of the Total Isolated ORS were abnormal.
I did ask my specialist about the preliminary report listing those 16 VTach episodes – he stated that they were all noise/artifacts, the preliminary report being only the computer interpretation, but when he looked at the recordings he saw nothing abnormal.
The two psychologists I have seen were recommended – one by an ER Dr, the other by my family physician. I have spent several sessions with both of them, and they both concluded – independently from one another that I do not display any signs of anxiety, other than the “normal” stress someone going through my situation (at that time ½ year of symptoms that came out of the blue, that no one was able to explain, after being perfectly healthy and leading what I consider a balanced life).

I apologize for the length of this post, I tried to give you as many details as possible in order for you to get the whole picture.  
I know that you’re doing this in trying to help people. You are in no way, shape or form obligated to get back to me, so I really appreciate you taking the time to write back. I’m sure you could be spending your time enjoying your retirement rather than trying to support all of us here on this forum. I’d like for you to know that I’m not taking what you do for me/us for granted, and I can hardly find the words to express my gratitude towards you. You might have heard this from other people, but Dr Rane, you are one of a kind, and I only wish there were more truly caring, dedicated, knowledgeable professionals like you.

Thank you!

Alex

Okay, tell me very specifically about the shortness of breath and generalized body weakness. How are you assessing these symptoms, or in other words what are the precise characteristics you are experiencing?

What I'm asking here is what you feel, not what you have if you see my point. You are describing clinical findings and not your symptoms. Tell me all of the elements of your symptoms and the conditions under which they are present.

Furthermore, I do not believe to any extent whatsoever that simple postural hypotension would cause these symptoms and a positive ANA by itself is of no clinical significance at all.

We'll talk more once I've received and read your response.

Best regards,

Rutheford Rane, MD (ret.)