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Abnormal Holter Monitor and Anxiety


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I was diagnosed in an outpatient clinic (did an ECG and some standing up tests). I was referred to a dysautonomia specialist (cardiologist) but warned that it could be a very long time before I heard back. I started having trouble standing so I went back to the outpatient clinic for a 48hr Holter Monitor and the report said:
 

“Sinus rhythm average 75bpm, 45 to 169bpm. Very rare ectopy. 1 non sustained ventricular tachycardia of 5 beats long. 1 atrial triplet. Several symptoms of lightheadedness, dizziness, chest tightness and shortness of breath all corresponded to sinus tachycardia up to 162bpm.” So I guess I didn’t have symptoms with the scarier ventricular tachycardia. It was over two of my better, more symptom-free days so that was funny. 
 

The internal medicine specialist referred me to an electrophysiologist cardiologist and prescribed bisoprolol. I’ve been having a pretty rough time on the bisoprolol in terms of stamina and worsening wooziness. I black out every day all day now, whereas before it was a few times a week and I’m trying all of the POTS suggestions (increased salt, electrolytes drinks, water, compression, exercise). Sometimes I get up slowly and think I’m fine and then completely lose vision and start to go tingly, wooshy after five steps or so.
 

I had the initial telephone consult with the electrophysiologist today hoping he’d tell me more about what the abnormal Holter Monitor meant and why I’m on bisoprolol but instead he just said that I have POTS due to chronic inflammation and that he’d refer me back to the dysautonomia specialist I’ve already been referred to as well as recommend that I follow up with my hematologist about the source of inflammation. Also referred to the cardio rehab exercise clinic. So I got off the phone feeling very frustrated because I forgot to mention things during the appointment, he seemingly didn’t even look at my chart, and then about a half hour later received an email that he’s sending me to get an echocardiogram in October. ? Also my heart rate has gone way down in about six weeks and I don’t know if it’s my FitBit calibrating or if it’s heart damage of some kind? (Although from what I understand via very limited research usually heart rate increasing is bad and decreasing is good...)

I’m frustrated with the being referred back to my hematologist for diagnosis because she thought it could be Essential Thrombocytosis (a blood and bone marrow disorder) and then just decided on “Chronic Inflammation due to stress” after undetected Jak2 & CalR mutation genetic testing. It’s just that my CRP is 50, platelets are 600, ESR is sometimes normal, MCH, TIBC, Transferrin are always low and on my last blood test my RBC was high. It feels like something is more wrong, I have a history of thyroid cancer so I’m worried about that or a secondary primary cancer (+30% chance statistically) but I don’t know how to advocate for myself anymore. My endocrinologist says my tumour marker antibody has to go up to 22 before she’s concerned (it’s at 17) and she hasn’t done a scan in many years because she doesn’t think it’s necessary. I know that people can just have POTS and Chronic Inflammation but how do you deal with the anxiety of the possibility of an undiagnosed underlying disease or condition? Do I need to take anxiety meds? Not into the idea of taking meds if they’re processed in the liver because I have NAFLD and still need to have a FibroScan at the end of this month. 

 

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Hi @Bobannon I don’t have answers for your excellent questions but I do want to say that the diagnostic process is absolutely anxiety provoking, and I think everyone here has felt it at one time or another.  It’s so hard to get thoughts organized when your body is working hard to stay upright. AND trying to get your questions answered during a time-limited  face to face with your provider! Can you email a list of questions to the different docs? I imagine your heart rate decreasing is because of the beta blocker doing what it’s supposed to do. You didn’t mention blood pressure-do you know what is happening with that? Can you monitor it at home?  Some POTS patients respond well to beta blockers and some don’t at all. It does take some time to adjust so you may need to see if your symptoms improve. Feedback to the prescribing MD is important so they can adjust dosage or medication if needed. It’s a lot of trial and error to find the right medication and treatment regimen. I think your visit with autonomic specialist will be very helpful. Hang in there and keep reaching out to your medical team and to your POTS community!

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12 hours ago, Bobannon said:

I’ve been having a pretty rough time on the bisoprolol in terms of stamina and worsening wooziness. I black out every day all day now, whereas before it was a few times a week and I’m trying all of the POTS suggestions (increased salt, electrolytes drinks, water, compression, exercise).

Hello @Bobannon - this all sounds very scary! I also have a history of passing our daily, despite the usual self treatments. Beta blockers commonly cause a loss of energy and feeling tired - most often this goes away after a few weeks, once your body adjusted to being on them. However - ANY medication you take should DECREASE episodes of syncope. You should inform your prescribing physician right away of an increase in syncope. 

12 hours ago, Bobannon said:

why I’m on bisoprolol but instead he just said that I have POTS due to chronic inflammation and that he’d refer me back to the dysautonomia specialist I’ve already been referred to as well as recommend that I follow up with my hematologist about the source of inflammation

In POTS most cardiologists order a beta blocker for the tachycardia, as well as the ectopic beats. Chronic inflammation can be a cause of dysautonomia and the cause needs to be investigated. I too suffer from POTS as well as chronic inflammation, and since my autonomic specialist started me on Plaquenil for the inflammation both inflammatory and POTS related symptoms have improved. 

 

12 hours ago, Bobannon said:

Also referred to the cardio rehab exercise clinic.

This is a very good idea. Exercise is essential in overcoming POTS, and in a cardiac rehab setting your HR and BP will be monitored during the exercise, so they will be able to not only see what is going on but also assess your tolerance to exercise. When I was at my worst I passed out when I would be active - if that is the case for you they will be right there and report any abnormalities to the physician that ordered the rehab. 

Unfortunately it is the norm that autonomic specialists have very long waiting lists for new patients - most of them over 1 year. In the mean time it is important to have a close relationship with your PCP, who will need to address any serious symptoms such a syncope, chest pains etc. I had to wait one year and in the meantime saw 4 cardiologists that were equally useless in treating my POTS - I hope that is not the case for you. Today most physicians have a basic understanding of POTS, but often that does not go past fluids, salt and beta blockers. I am lucky to have an excellent PCP who tried really hard to control my symptoms while waiting for the specialist. 

I agree with @CJ65 that measuring your HR and BP frequently is important,  and keeping a diary of those numbers as well as your symptoms can be extremely helpful to your physicians. I also keep a note book in which I record any questions I have for the different docs and that I take to appointments with me. That is the only way I can assure that all my problems get addresses during appointments or phone calls. And don;t be afraid to make a pest of yourself - only if your docs know what is going on can they make necessary changes to your treatment. Recurring uncontrolled syncope is NOT OK - so you need to make sure your doc knows about it. 

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11 hours ago, CJ65 said:

Hi @Bobannon I don’t have answers for your excellent questions but I do want to say that the diagnostic process is absolutely anxiety provoking, and I think everyone here has felt it at one time or another.  It’s so hard to get thoughts organized when your body is working hard to stay upright. AND trying to get your questions answered during a time-limited  face to face with your provider! Can you email a list of questions to the different docs? I imagine your heart rate decreasing is because of the beta blocker doing what it’s supposed to do. You didn’t mention blood pressure-do you know what is happening with that? Can you monitor it at home?  Some POTS patients respond well to beta blockers and some don’t at all. It does take some time to adjust so you may need to see if your symptoms improve. Feedback to the prescribing MD is important so they can adjust dosage or medication if needed. It’s a lot of trial and error to find the right medication and treatment regimen. I think your visit with autonomic specialist will be very helpful. Hang in there and keep reaching out to your medical team and to your POTS community!

Hey thanks for your response! 
 

My blood pressure was Pre-hypertensive before the beta blocker while resting/standing and dipping down really low upon standing but now seems to be normal with the beta blocker at rest, however I’ve had some trouble taking it within a minute of standing because the machine I have just gives me an error message so it probably wouldn’t hurt to get my blood pressure checked seated/standing at my next in-person appointment. Maybe it’s dropping more with standing up now?

I was worried about the average daily heart rate dropping to bradycardia before starting the beta blockers because it seemed weird given that I’m exercising less now, but my thyroid medication was lowered so maybe that has something to do with it (rechecked a few weeks ago and it was still too high/I was still quite hyperthyroid). I started the beta blocker June 25th at a 68bpm resting heart rate and it’s down to 57bpm resting today. Apparently a drop in resting is normal but at the end of May I was in the 90s resting. You can see how the average daily resting bpm dropped in the teal FitBit graph. Super weird. I tried to communicate this to the cardiologist but he didn’t understand what I was saying at all and it was over the phone so I couldn’t show him. Blergh. He also didn’t even say “ventricular tachycardia” during our appointment so I think he just went off of my POTS complaint and for some reason I felt bullied into being quick/not pushing to talk about more and just shutdown. Feels like I really messed up the initial consult, but he also should’ve read my chart before the appointment or even during and not (seemingly) after and just booked a test for me without any explanation as to why. I’ve figured it out on my own - if there’s any NSVT in someone under 40 years of age they usually investigate for some kind of structural issue in the heart. 
 

 

82D33B66-4CCD-4808-9AC9-4F1BFA12DFD4.jpeg

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5 hours ago, Pistol said:

Hello @Bobannon - this all sounds very scary! I also have a history of passing our daily, despite the usual self treatments. Beta blockers commonly cause a loss of energy and feeling tired - most often this goes away after a few weeks, once your body adjusted to being on them. However - ANY medication you take should DECREASE episodes of syncope. You should inform your prescribing physician right away of an increase in syncope. 

In POTS most cardiologists order a beta blocker for the tachycardia, as well as the ectopic beats. Chronic inflammation can be a cause of dysautonomia and the cause needs to be investigated. I too suffer from POTS as well as chronic inflammation, and since my autonomic specialist started me on Plaquenil for the inflammation both inflammatory and POTS related symptoms have improved. 

 

This is a very good idea. Exercise is essential in overcoming POTS, and in a cardiac rehab setting your HR and BP will be monitored during the exercise, so they will be able to not only see what is going on but also assess your tolerance to exercise. When I was at my worst I passed out when I would be active - if that is the case for you they will be right there and report any abnormalities to the physician that ordered the rehab. 

Unfortunately it is the norm that autonomic specialists have very long waiting lists for new patients - most of them over 1 year. In the mean time it is important to have a close relationship with your PCP, who will need to address any serious symptoms such a syncope, chest pains etc. I had to wait one year and in the meantime saw 4 cardiologists that were equally useless in treating my POTS - I hope that is not the case for you. Today most physicians have a basic understanding of POTS, but often that does not go past fluids, salt and beta blockers. I am lucky to have an excellent PCP who tried really hard to control my symptoms while waiting for the specialist. 

I agree with @CJ65 that measuring your HR and BP frequently is important,  and keeping a diary of those numbers as well as your symptoms can be extremely helpful to your physicians. I also keep a note book in which I record any questions I have for the different docs and that I take to appointments with me. That is the only way I can assure that all my problems get addresses during appointments or phone calls. And don;t be afraid to make a pest of yourself - only if your docs know what is going on can they make necessary changes to your treatment. Recurring uncontrolled syncope is NOT OK - so you need to make sure your doc knows about it. 

I’ve been prescribed Naproxen in the past for inflammation but it gave me bleeding gastritis (had the endoscopy and it was normal but blood in stool with horrible diarrhea for weeks). I’m not supposed to take NSAIDS now. It would be good to find out if I can take anything else. 
 

I haven’t really tried speaking with my family doctor all that much because I just figured she wouldn’t be able to help. Maybe a good idea to at least tell her when symptoms are getting worse so we can keep track. Thanks! Good point re: following up. 
 

I didn’t expect the electrophysiologist to treat the POTS, I was just hoping he could rule out a heart problem and educate me about the Holter Monitor result posted to the patient portal but he didn’t address anything other than tell me I have POTS like it’s a new diagnosis. 🤦🏻‍♀️

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@Bobannonif it makes you feel better I was also sent to cardiologist when I first got sick who was an EP and she told me I couldn’t have POTS because my BP rose when I stood. To her credit she called me that day to take back that statement. Then she referred me to autonomic specialist (9 month wait), prescribed clonidine and sent me the Levine exercise protocol and told me to do it with absolutely no instruction. Fortunately my primary manned the ship while I waited to go to Stanford and she and the cardiologist communicated directly with Stanford for guidance while I waited to be seen. Fortunately appointments opened up and I got in in 6 weeks with a different clinician. Call the office and ask if they use a waitlist  for cancellations. Ask your family doc if she can communicate with EP and like @Pistol said give your primary a list of exactly how you feel. Use concrete terms and data like your HR and BP readings, changes from your baseline etc. You described it beautifully in your post. Doctors are constantly under time pressures so clear cut info helps them. If you are feeling worse don’t worry about being a squeaky wheel. Good luck!

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3 hours ago, Bobannon said:

I’ve been prescribed Naproxen in the past for inflammation but it gave me bleeding gastritis (had the endoscopy and it was normal but blood in stool with horrible diarrhea for weeks). I’m not supposed to take NSAIDS now. It would be good to find out if I can take anything else. 

I am not able to take NSAIDS for the same reason. Dysautonomia in my case caused severe GERD and as a result I cannot take meds that are aggressive on the GI tract. What has helped me immensely is Turmeric - a spice that has known and powerful anti-inflammatory properties. For GI problems, especially ulcers etc, my GI specialist ordered a combination of H2 blockers, acid reducers and something called GI cocktail ( Mylanta, viscous lidocaine and phenobarbital ). This mix healed the erosions caused by the increased acid production, including Barrett's esophagus - a pre-cancerous abnormality of the lining of the esophagus.  Make sure you consult a GI specialist for your symptoms! 

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Sorry you are having trouble. Your bloodwork is interesting. Did they test your ANA? Did they say it was negative or was it really mildly elevated? Do you have access to a Rheumatologist? With those kinds of inflammatory markers in your blood, you might benefit from seeing one. I have something called Undifferentiated Connective Tissue Disease. When my Rheumatologist treated the inflammatory condition, my dysautonomia got better. Just a thought.

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1 hour ago, Pistol said:

I am not able to take NSAIDS for the same reason. Dysautonomia in my case caused severe GERD and as a result I cannot take meds that are aggressive on the GI tract. What has helped me immensely is Turmeric - a spice that has known and powerful anti-inflammatory properties. For GI problems, especially ulcers etc, my GI specialist ordered a combination of H2 blockers, acid reducers and something called GI cocktail ( Mylanta, viscous lidocaine and phenobarbital ). This mix healed the erosions caused by the increased acid production, including Barrett's esophagus - a pre-cancerous abnormality of the lining of the esophagus.  Make sure you consult a GI specialist for your symptoms! 

I don’t have GERD or anything like that, but I do love anti-inflammatory foods so maybe I’ll go back to having turmeric steamers again since I’m not supposed to be drinking caffeine! Good call. I’ve only ever had episodes of nausea and vomiting but it generally only lasts an afternoon or evening at a time and then it’s back to normal digestion. 

15 minutes ago, KiminOrlando said:

Sorry you are having trouble. Your bloodwork is interesting. Did they test your ANA? Did they say it was negative or was it really mildly elevated? Do you have access to a Rheumatologist? With those kinds of inflammatory markers in your blood, you might benefit from seeing one. I have something called Undifferentiated Connective Tissue Disease. When my Rheumatologist treated the inflammatory condition, my dysautonomia got better. Just a thought.

ANA and rest of autoimmune panel was negative when the liver specialist ran it. The only immunoglobulin that was slightly elevated was IgA. And the thyroid antibody was still present despite having a full thyroidectomy over a decade ago. I still feel like that’s a bit odd because my body shouldn’t be producing thyroid antibody if there’s no thyroid tissue. I might push for that to be rechecked when I go back to the doctor in August because it’s been a year since the last one. I don’t know what else she can look for. I accidentally haven’t had a Paps test in six years but I’m doing that at my next appointment as well because my cycle has also increased in intensity and unpleasantness over the past year too. Trying to rule all of the scary things out.

Also seems weird that the ESR blood level is sometimes normal, sometimes elevated despite the CRP being always elevated. Is that common with POTS?

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11 hours ago, Bobannon said:

I still feel like that’s a bit odd because my body shouldn’t be producing thyroid antibody if there’s no thyroid tissue.

My mother had to have a thyroidectomy and was told that it is virtually impossible to remove ALL of the thyroid tissue due to its proximity to the vocal chords ( or is it the voice box? ) So she also had radioactive treatment to destroy the rest of her thyroid. 

 

11 hours ago, Bobannon said:

Also seems weird that the ESR blood level is sometimes normal, sometimes elevated despite the CRP being always elevated. Is that common with POTS?

I have definite signs of auto-inflammation ( IC, gastritis, swollen painful joints, skin breakouts etc ) but most of my blood work is negative. The only lab that is elevated periodically is the ESR ( which is a general indicator of inflammation ). CRP is a more direct test to diagnose inflammation or even AI. 

I am not aware that these tests are commonly elevated in POTS patients, but I assume that it could be if the cause of POTS is of inflammatory origin. 

Here is an article about this: Autoimmune markers and autoimmune disorders in patients with postural tachycardia syndrome (POTS) - PubMed (nih.gov)

Quote "Conclusion: Patients with POTS have a higher prevalence of autoimmune markers and co-morbid autoimmune disorders than the general population. One in four patients have positive ANA, almost one in three have some type of autoimmune marker, one in five have a co-morbid autoimmune disorder, and one in nine have Hashimoto's thyroiditis.

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