Lou15
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Lou15, August 16,  2019  3:44am EST

Anyone else been diagnosed with inappropriate sinus tachycardia

Hi , I’m just wondering if anyone here has been diagnosed with IST , ? I’ve been having terrible symptoms of increased heart rate , just when walking it can get 136 and sitting can be around 105 . I had an episode a month ago and 2 times it reached 167 

my cardiologist has taken me off beta blockers and trying me on coralan but I’m feeling very unsure about it all as I can be good one minute and then feel it come on or build up and feel like vomiting, shaking, breathless (alot) headaches, dizzy. 

When my heart goes fast from walking a few stairs I feel like I just ran up and down the street . And I get palpitations a lot. 

I feel like I’m not getting far with my drs as they all seem a bit clueless and just send me home with meds saying it will get better, mean while I cannot work or live like I use to.

can anyone relate to these symptoms or offer advice please x

7 Replies
  • Ralaz
    Ralaz, August 16,  2019  9:11am EST

    Have you tried seeing an Electrophysiologist? They are specialists (Cardiologists) who deal with arrhythmias such as yours and they have special knowledge with the use of drugs and how they interact in managing arrhythmias. It is important that you are diagnosed correctly as arrhythmias can be misdiagnosed if you are not seeing a really good cardiologist.

  • Scoocoo
    Scoocoo, August 16,  2019  10:51am EST
    Before getting pacemaker year ago last week my pulse range was 49-53, occasionally as low as 38-39! Vigorous walking or weights workouts never took it higher than 72-75. Since adding the PM, never know what any exercise might cause. I'm writing this 15 minutes after returning from 40-minute walk on neighborhood streets, mostly fairly even but with enough ups and downs to build in some stress variety. So far I've cooled down to 76bpm from walk average 100, against normal resting rate 62. But sometimes merely walking normal pace from living room to nearby bath, it can hike up to mid 80s by time I sit down there. My cabin sits 23 uneven stone steps above the driveway. Some days, simply climbing that leaves me noticeably short of breathing and feeling like about to throw up. Others -- even God-awful HOT ones like past few -- I can make 2 or 3 grocery hauls with no worse after effects, sometimes not even those. Blood pressure monitoring never shows anything scary high around any of this.
    Summation: ZERO idea what it all means. Just do my twice yearly PM lab digital checkup, immediately followed by cardiologist exam. Almost 24 years since "mild" heart attack and subsequent 3 stents, then 2002 quadruple bypass. Considering Dad's side cardio hand I was dealt, consider myself extremely blessed to be alive at all -- much less with the unbelievable condition I'm still in as I near octogenarian status.
  • Lou15
    Lou15, August 16,  2019  7:35pm EST

    I definitely feel the way this article describes. I was misdiagnosed about two and half years ago with same symptoms and kept ending up in ER with high heart rate and all symptoms that come with it, they ended up telling me it was anxiety ( I knew it wasn’t, though it definitely created anxiety in me) eventually it settled down after a few months but lots of drs visits trying me on antidepressants and anti anxiety meds. But over those 2 years I did have a few episodes and lots of night time episodes that I kept putting down to anxiety or nothing. 

    A month ago it all started again while I was at work , I’d been getting headspins and breathless for the two weeks leading up to the event and then I passed out at work and have had many episodes since. Only last night I was continuously awoken with heart rate around 140 . My cardiologist really has given me nothing except yes it’s IST a drug for anxiety and to slow heart rate down and he said I believe in 3 months you will be back to your normal self . Like seriously 😒 

    Now I’m such an emotional mess as now I have to find a cardiologist who will take me seriously and stop having these episodes , I cannot have a life atm , I cannot work etc because as soon as I exert myself up goes my heart rate and I’m breathless.

  • Woink1000
    Woink1000, September 2,  2019  2:25pm EST

    Hello.

    i am a 33 year old woman and I have stupid heart stuff too.

    last year in January 2018 I was at work and all of a sudden I started getting very fast pvcs coming in, they were out of control and the more I panicked, the worse they got.

    i also felt my heart rate go very high, which wasn’t unusual for me as I am a panicked person a lot of the time.

    i ended up in the emergency room several times within a few days, as the pvcs and high heart rate wouldn’t subside.

    i got evaluated by doctors that told me I was under stress and to calm down, it’s just anxiety.

    well, I know my own body and this wasn’t anxiety!!!

    so a few weeks went by and this kept happening, pvcs continually, and the fast heart rate was extremely noticeable after eating, which was strange.

    i ended up getting put into a beta blocker, propranolol, to help me when I ate, as it kept my heart rate down enough for me not to panic.

    i needed up in the ambulance several times within a few months with my heart rate over 170 and very frequent pvcs.

    the hospital doctors, booked me into the cardiologist and from there I got ever test done over the next few months.

    adjusting my beta blockers and doing treadmill tests. Checking for POTS, as my heart rate was elevated a lot upon general walking and standing.

    many lost nights of no sleep with worry, wanting to end my life because these symptoms came on very abruptly for no reason, and don’t go away very quickly.

    so here we are at present day September 2019.

    still living with these stupid episodes of high heart rate every no and then, and occasionally getting pvcs.

    i saw an electrotheripist, and he put me on 80mg of propranolol morning and night, and 100mg of flecinide, morning and night.

    boy has it help, but like right now, I’m panicking a little because I woke up with a fast heart rate for no reason.

    my point is, yes this sucks, and I am diagnosed with inappropriate sinus tachycardia and frequent pvcs.

    but it does get easier, most days when I know it’s coming on, I splash very cold water on my face, breath in, gold my breathe for 10 seconds and relsese, it makes the vagus nerve calm down and help lower the heart rate.

    i feel these espsodes coming and try to prepare myself, but it sucks when you can feel you heart pound and your heart rate shoot up.

    it does get easier, try not to let this bother you, ignore it the best you can, that’s what I do as panicking makes it 100 times worse.

    as the cardiologist told me, there is no reason why my heart decides to beat fast for no reason, thats why it’s inappropriate.

    you will feel better soon, I live with this everyday, and it won’t kill you.

    its just something that our hearts do for no reason.

     

  • Raindrop32
    Raindrop32, December 17,  2019  5:28pm EST

    Count me in the "Exclusive IST Club."

    I was just diagnosed a month ago, after half a year of symptoms and a dangerous episode that brought me to ER and had me in the hospital for a few days. 

    In my case, my resting HR is normal, but I have an exxagerated response to triggers such as physical activity, and changes in position. I had angina, lightheadedness, rapid HR, palpitations, and fainting. As an active person, it got to the point where I was experiencing some symptom or other all day long, every single day. And sometimes I had symptoms without a noticeable trigger.

    About a month ago (wow, it seems like just yesterday), I had an episode with no obvious trigger in which I had an electrical malfunction that brought on palpitations, repeated fainting, repeated sensations as though my heart stopped (could've been very brief arrest or ventricular fibrillation), numbness in extremeties, shakiness, very rapid HR. By the time I was examined, my ECG was normal. The doctors put me on a Holter monitor, and finally were able to make a diagnosis when I had an episode of ianppropriate tachycardia in the hospital that they could observe in progress. 

    My cardiologist prescribed metoprolol (Beta blocker). So far, I'm still in the titration process. Like many IST patients, I have low-ish blood pressure, and sometimes beta blockers can lower it too much. I'm not symptom-free,but It's much better. My exercise tolerance has improved, and I have far less angina. I haven't fainted once since starting. 

    I also feel very fortunate that doctors took me seriously rahter than automatically sending me away because I'm a 33 year old woman without an obvious weight problem. And they understood how debilitating IST can be despite the fact that it won't directly kill you (although it can absolutely kill you indirectly if you lose consiousness at the wrong time and place, eg driving).

    I've been closely tracking my HR, BP and symptoms, and I've noticed that a few lifestyle modifications help reduce triggers:

    getting enough sleep (I wish)

    no sugar!  it makes you hyper

    no more than 3 cups of coffee per day (preferably less-- I'm working on this part)

    keep a comfortable temperature while sleeping (cool little slip nightgowns, Thank you Victoria's Secret for helping me suffer in style)

    take a thermos of herbal tea outside to sip when it's cold to keep my heart warm

     

  • ISTLife
    ISTLife, December 28,  2019  3:21pm EST

    Hello.  I have also been diagnosed with IST about two months ago.  It all started when I went to the ER April 2019 after I woke up with a pounding heart rate around 3 a.m.  All I could say is "I need help".  As I was on the way to the hospital I felt like the fast heart rate was going down slightly.   A few minutes after I arrived at the hospital I was shaking uncontrollably and I couldn't get up, out of the ER waiting room chair once they called me in to get my vitals.  It took a couple of minutes before I could get my body to get up.  My heart rate had gone down to 145 when they took my heart rate.  After being in the ER several hours taking several tests (Xrays, ECG, CT Scan, cardiac ultrasound, numerous blood tests, etc) they admitted me to the hospital for observation.  They said I now had hypothyroidism along with the rapid heart rate, so they prescribed Synthroid .05 mg daily and Diltiazem (calcium channel blocker) 120 mg daily.  They said it might have been an SVT or PSVT episode.  I didn't have an episode again.  My cardiologist had me on a 24 hour heart monitor without remarkable results, then on a 30 day monitor, nothing according to them again.  It was now September 2019 and I felt well, I was able to decrease dosage to 60 mg with cardiologist approval.  I was doing the elliptical for 45 minutes then doing laps for about an hour three times a week, so I thought maybe it wouldn't happen again and I could get off Diltiazem with my cardiologist permission.  I had endometrial polypectomy surgery in October and the cardiologist said that if I didn't have an SVT episode after anesthesia that I could stop the Diltiazem.  I took a smaller dose of 30 mg for a little over a week then stopped it.  About 2 weeks later it was ok to start working out again after surgery, so I got on the elliptical for 30 minutes.  About an hour after the workout my heart rate got up to 120 bpm and continued to be high the rest of the week. so I contacted my cardiologist, he had me go back on 60 mg daily of Diltiazem.  It wouldn't calm down at all even at night sleeping, kept waking me up several times.  I asked to increase the dosage back to 120 mg daily.  It was no longer working.  My resting heart rate was 120 and once I got up it would go up to 145 bpm.  This is all day every day!  Exhausting, debilitating and scary!  My cardiologist referred me to a cardio electrophysiologist.  During my visit to the electrophysiologist, he reviewed my previous heart monitor results that I had done and asked what my symptoms where and he immediately said I had Dysautonomia with IST being one of the many symptoms (being the worst symptom right now for me) which caught me off guard because all along I was thinking I had SVT and I could have an ablation to try and fix it.  He kept asking if I have fainted, no just dizzy.  With POTS fainting is one of the symptoms.  He prescribed Ivabradine (Corlanor) "off label" since it is only approved for heart failure, but tests have shown that it helps IST patients lower their heart rate.  There were issues with the insurance not approving the medication etc.   Anyway, I finally have it and have taken it for a couple of days and it has lowered my resting heart rate (sitting/sleeping) from 120 to 77-99 bpm, but as soon as I start walking around doing minimal things it goes up to 120-135.  I am really hoping that maybe with a little more time taking it that it will lower that also.  The electrophysiologist told me to drink lots and lots of water throughout the day, eat more sodium, take electrolytes and wear compression socks.  My 2nd appointment with the electrophysiologist is in one month.  Dysautonomia is not a rare disease, but IST is.  There is no cure yet.  Many people with IST have had it for many, many years.  Some with varying degrees in their symptoms.  Most get it between 20's - 30's.  I am in my late 40's.  I am still trying to process it all.  It's life changing.  Take care everyone. 

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