Pots And Ist Together

[RichGotsPots]

I'm just curious how many of us have both POTS and IST. For example I have POTS 24/7, 365 days a year. But I get times when I am flaring, or have infections or just certain hours of the days or other times when my resting pulse is very high. Sometimes as high as 120-130 laying. Sometimes its hours and sometimes its days to weeks that high just resting. So I was just curious who else has this.. I still have the 30+ increase standing so during these times it's like I have both..

[PupLoverKV]

Honestly, I thought I had both at the beginning. Not sure if something changed or was maybe misinterpreted, but now I have 2nd degree AV block at times. Large percentage of the time is sinus tachycardia when it's not something really crazy. (RHR ~100, often 120+). Good luck!

[artsystacey]

I have POTS & SVT - dunno is SVT is classified separately or not so I'm not sure.

[lewis]

Any ist and svt I had was brought on with the pots. I've found I can manage it by the things that affect me and eliminate these things. I don't eat gluten (if I do it shoots straight up) lifting weights, no chemically made vitamins, staying hydrated, eating red meat everyday, are the biggest things. My resting heart rate right now is 55bpm and that's right where I like it.

[SarahA33]

Hi Rich,

I have both pots and ist. I think that's why I responded well to the ivabradine, did you go back on it yet? Also, how are you feeling? Hope that antibiodic helped you out. I get hit hard from infections. Uti's, etc, anything with fevers seem to knock me down. I go back to Cleveland in a few weeks. They help me such a great deal, I hope this time they'll be able to work their magic again!

Happy holidays, take care,

Sarah

[artsystacey]

Any ist and svt I had was brought on with the pots. I've found I can manage it by the things that affect me and eliminate these things. I don't eat gluten (if I do it shoots straight up) lifting weights, no chemically made vitamins, staying hydrated, eating red meat everyday, are the biggest things. My resting heart rate right now is 55bpm and that's right where I like it.

Hey Lewis, my EP seems to think dysautonomia and SVT are unrelated - have your doctors told you otherwise? I feel like POTS feeds into my SVT.

[lewis]

My holter monitor test showed a few instances of svt. Everytime I had the svt I was dehydrated and walking. I think for me it was due to my blood vessels not constricting and my heart trying you compensate for the low blood pressure which is directly related to the dysautonomia. I think there may be different forms of svt or that my holter monitor was showing results that looked like svt but wasn't actually an svt.

[Bigskyfam]

First came pots then svt on 30 day monitor 2 years later, EP thinks is it's unrelated, said he doesn't know much about pots. Offered an EP study. I didn't do this because I'm losing my insurance

[RichGotsPots]

I have POTS & SVT - dunno is SVT is classified separately or not so I'm not sure.

I would say SVT is different because its cause isn't autonomic dysfunction. But many potsies have it

[RichGotsPots]

Hi Rich,

I have both pots and ist. I think that's why I responded well to the ivabradine, did you go back on it yet? Also, how are you feeling? Hope that antibiodic helped you out. I get hit hard from infections. Uti's, etc, anything with fevers seem to knock me down. I go back to Cleveland in a few weeks. They seem to help me such a great deal, I hope this time they'll be able to work their magic again!

Happy holidays, take care,

Sarah

Hey Sarah, I never got up to that higher dose that I needed to lower it. I still have a bottle, but the doc who gavenit to me got scared off my my last infection reaction and said pots is too much to handle. So I need to get back to my regular pots cardiologist (he is just far and ***** and following me when on new meds) i want to try it again, so hopefully soon. i was getting better every day after I finished the antibiotics, but I was just in the ER because I got another infection (4 weeks later). They gave me a low dose z pack, lower then last time so I hope it helps. On top of getting checked out for Mito disease in a month, I made an appt to get checked for Adult on-set cystic fibrosis. I fit a lot of the criteria and the testing is easy and straight forward so just wanna cross it of the list. Make sure to get an appt with the cleveland clinic wellness center. Its the holistic branch of the cleveland clinic and they know about pots there.. Good luck! Update me!

[Loulou]

Hey. I have POTS and IST. As soon as I wake up, I am at least 95 before I even get out of bed. I have very high heart rates on my bad days, but 120/130 is my average on good days. I am a hyperpotsie and do not tolerate meds well. But it is good to hear some of you are able to get some help with meds. I don't get relief from my heart rate, but I have good and bad days with all other symptoms.

[RichGotsPots]

Wish more people would respond because I don't think a lot of research has been done with co-dysautonomias

[SarahA33]

I don't think a lot of doctor's have made a co-diagnosis yet. I agree with you that we need research on this. It took me years to get a diagnosis of both IST and POTS. Even with my HR being incessantly high even when I was supine and reaching well into the 200's at times. Dr. Fogros has written a few articles about the overlaps of IST and dysautonomia.

I'm wishing you the best at your upcoming appointments Rich. Late onset of CF is rare right? I hope that testing is negative. Regarding the mito doctor, I hope you will get some answers. I know you really deal with a lot, I hope they can help. I considered going to the wellness center at the cc a while back, however, I don't think its covered by insurance (if we're thinking of the same branch). It's pretty expensive from what I can remember but I'm sure it's fantastic. Sarah

I just wanted to share this:

"Inappropriate Sinus Tachycardia (IAST)

IAST is a form of focal atrial tachycardia that originates from the superior aspect of the crista terminalis or terminal crest, in the sinus node region. Figure 4 shows an ‘atrial floor plan’ that demonstrates the relationship of structures within the atria. The crista terminalis can be seen in the right atrium. IAST has been difficult to classify; two theories exist for its origin, one being an abnormality of SA nodal function and the other possibly a dysautonomia.

The arrhythmia is characterized by a resting heart rate over 100 bpm or a heart rate that increases to over 100 with just minimal exertion or as a response to stress. The heart rate may drop into the 80s during sleep. The P wave seen is the same as in normal sinus rhythm. The onset and termination of the rhythm are gradual. The rhythm is noninducible in the EP lab, and responds to carotid sinus massage with slowing but not termination.2 Patients correlate their symptoms with actual documentation of the tachycardia. Differential diagnoses may include right atrial tachycardia and postural orthostatic tachycardia syndrome (POTS).

IAST seems to occur most often in young women aged 15-50.4,5 Symptoms include palpitations, dizziness, syncope, orthostatic intolerance, chest pain, headache, myalgia, dyspnea, anxiety, depression, reduced exercise tolerance, and abdominal discomfort. Symptoms may be present for months or years. Some cases have followed a viral illness or physical trauma.

The two theories that have been proposed for the etiology of the rhythm are excessive autonomic tone or abnormal sinus node function. The excessive autonomic tone or dysautonomia hypothesis suggests that there is a loss of autonomic balance, with either the sympathetic dominating or the parasympathetic being blunted. It is important to keep in mind that dysautonomias are often inherited. The abnormal sinus node function hypothesis suggests that the SA node may be structurally abnormal, leading to an enhanced heart rate response to epinephrine.6 Ultimately these abnormalities both lead to a loss of heart rate variability.

Treatment options include ablative and noninvasive approaches. The ablative approach to management involves modification of the SA node. After ablation, immediate response may be favorable, but long-term success rates have been disappointing.5-7 The noninvasive management includes avoidance of possible event triggers. Antiarrhythmic drugs that have been found useful include beta-blocking agents, calcium-channel blockers, and class IC agents. Because of the autonomic trigger mechanism that may be responsible for initiation of the tachycardia episodes, adjunctive therapies such as aerobic training, biofeedback, and meditation, which aim to decrease the sympathetic component, are also being tried." http://www.eplabdigest.com/articles/The-Other-Sinus-Tachycardias

[Loulou]

Even the American College of Cardiology question it but are unsure. Here is a clip I just read from the website. Highlight it if you can not see it, Sorry....

http://content.onlinejacc.org/article.aspx?articleid=1486711

Diagnosing Inappropriate Sinus Tachycardia

The diagnosis of IST is based on persistent or recurrent sinus tachycardia on 12-lead electrogram or by long-term monitoring that is not otherwise explainable. Invasive testing, such as electrophysiology studies, is not useful for making the diagnosis, although it may be useful to exclude a concomitant supraventricular tachycardia mechanism (57). The evaluation of sinus tachycardia must take into account whether the rhythm is paroxysmal or persistent. Careful analysis of a 12-lead electrocardiogram should consider P-wave morphological features. If the P-wave is the same or similar to that in normal sinus rhythm, IST is possible. If paroxysmal, atrial tachycardia, including sinus node re-entry, should be excluded. If tachycardia occurs gradually with postural change, a tilt-table test may indicate POTS; with tilting, the increase in heart rate is nearly immediate in IST (58). If tachycardia is persistent and an underlying cause can be determined, IST is not present. In the patient with generally persistent episodes for which no cause can be determined, however, IST may be diagnosed. IST is a diagnosis of exclusion.

Commonly, there is confusion between IST and POTS; overlap between the 2 exists (Table 3) (59). Tachycardia in IST is not postural as it is in POTS. In POTS, there is a persistent increase in heart rate by more than 30 beats/min or a rate of more than 120 beats/min within 10 minutes of changing from a supine to an upright position in the absence of orthostatic hypotension. As with IST, patients with POTS often have multisystem symptoms. There is venous (including splanchnic) pooling, α-hypersensitivity and β-hypersensitivity, baroreceptor dysfunction, hypovolemia, the presence of brainstem dysregulation, or a combination thereof. One has to wonder: is tachycardia in POTS inappropriate? Probably so.

[BettyD]

I have both and it took a long time to get the correct diagnosis. I was diagnosed with POTS about 10 years ago but nobody caught the IST until this year. I switched to a new EP that made me wear a holter monitor for two weeks and it showed up. Previous holter monitor was only worn for 24hrs. I was so surprised because I didn’t know it was possible to have both. Have never been able to tolerate beta blockers because they lower my blood pressure too much. Was put on Corlanor and it has improved my life.

[Pistol]

@BettyD Is it correct that the difference in tachycardia from IST is that the resting HR is elevated, in POTS it only occurs while upright?

[BettyD]

On 7/18/2023 at 5:23 AM, Pistol said:

@BettyD Is it correct that the difference in tachycardia from IST is that the resting HR is elevated, in POTS it only occurs while upright?

Yes. That is correct.

[MaineDoug]

My IST was bad, but is under control as long as I drink 2+ gallons of water and 10 grams salt per day and limit standing to 2-3 minutes per episode. During major flares I see a return of the resting tachycardia. 
It was really scary when my HR would go sky high, multiple ED visits and 5 cardiologists couldn’t diagnose or help.