[skinnylove02]

Hello, I am starting a forum about Inappropriate Sinus Tachycardia (IST). I have it and am in need of treatment options. I would love to hear other people's stories. Thank You (:

[Silverrush]

Hi skinnylove. I have it as well. I take a low dose of Propranalol. It has helped up until now. Except lately the tachy is back with a vengeance. What kinds of symptoms do you get with it ? I get dizziness chest tightness and lots of anxiety. The only treatment option I was given was to increase the dose of Propranalol which is not a option right now as I am breastfeeding. Glad to know I'm not alone !

[skinnylove02]

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[skinnylove02]

Hi skinnylove. I have it aswell. I take a low dose of Propranalol. It has helped up until now. Except lately the tachy is back with avengence. What kinds of symptoms do you get with it ? I get dizziness chest tightness and lots of anxiety. The only treatment option I was given was to increase the dose of Propranalol which is not a option right now as I am breastfeeding. Glad to know I'm not alone !

Hello Silverrush :) yes it sure is reassurring to know I'm not alone either, I am glad you responded to me thank you so much! Sorry to hear your tachy isn't so good at the moment, I am currently on atenolol 50mg but it causes me to feel regularly dizzy, fatigue and causes blood vessel constriction in my arms and legs. I have also tried coralan (ivabradine) which caused loss of appetite, extreme tiredness, shortness of breath and other uncomfortable symptons. When untreated my tachy causes chest pain/tightness, exercise intolerance, palpatations, headaches, hot flushes, shortness of breath and dizziness. The only treatment options I have been offered are medications, I've herd things like ablations are sometime successful, but I am still very young. So I don't think I would be offered that as a option. How long have you had IST ?

[Silverrush]

Hello Silverrush :) yes it sure is reassurring to know i'm not alone either, I am glad you responded to me thankyou so much! sorry to hear your tachy isn't so good at the moment, i am currently on atenolol 50mg but it causes me to feel reguarly dizzy, fatigue and causes blood vessel constriction in my arms and legs. I have also tried coralan (ivabradine) which caused loss of appetite, extreme tiredness, shortness of breath and other uncomfortable symptons. when untreated my tachy causes chest pain/tightness, excercise intolerance, palpatations, headaches, hot flushes, shortness of breath and dizziness. The only treatment options i have been offered are medications, i've herd things like ablations are sometime successful, but I am stil very young. so I dont think I would be offered that as a option. How long have you had IST ?

I am 29 and have had it for 5 years. I have tried a higher dose of the beta blocker previously but it drops my blood pressure too low and makes me very dizzy as well as I already have low blood pressure to begin with. The cardiologist I saw basically told me to "live with it " no option of ablation. Easy for him to say He said the risk of ablation is greater than the risks of IST. I also get pvcs. My monitor recorded over a thousand in a 24 hour period. Have you seen an electrophysiologist or just a cardiologist ? I would like to get an EP study done because I am still not convinced it's not something more serious with all the symptoms I get.

[skinnylove02]

I am 29 and have had it for 5 years. I have tried a higher dose of the beta blocker previously but it drops my blood pressure too low and makes me very dizzy aswell as I already have low blood pressure to begin with. The cardiologist I saw basically told me to "live with it " no option of ablation. Easy for him to say He said the risk of ablation is greater than the risks of IST. I also get pvcs. My monitor recorded over a thousand in a 24 hour period. Have you seen an electrophysiologist or just a cardiologist ? I would like to get an EP study done because I am still not convinced it's not something more serious with all the symptoms I get.

I am only 16 and have had it for 2 years I got it after having pneumonia. Do you know what caused IST for you ? I also get the low bp with beta blockers, I don't suffer from pvcs though but I do get heart flutter. I am in hope of seeing an Electrophysiologist but no doctor will give me a referral to one. I have only seen general cardiologists who basically tell me I'm fine and have to live with it as well. I would do anything to fix this and feel normal again I'm sick of medications, I miss extreme amounts of school due to IST. I use to be very fit and healthy now I struggle to shower. At 16 I am living the life of a 70 year old. Do you know of any other treatment options for this condition ? I have only heard of ablations which sometimes lead to the need of a pacemaker, medications, and just trying to live with it. I am looking into starting cardiac rehabilitation.

[Silverrush]

I'm sorry you have to deal with this so young ! I struggled with extreme anxiety prior to being diagnosed with IST and still do. I have two little boys and find myself feeling like a gramma as well. I don't know of any other treatment options besides medication and ablation unfortunately. I would also love to see a electrophysiologist. I guess since they consider it benign they don't much care... I don't get how it can be benign a heart can only work so hard for so long ! My heart rate jumps to 180 just from walking up my stairs. It's so frustrating. I have hope for the future that doctors will be more compassionate to this illness because its so hard to live a normal life. Keep on trucking! We will make it !

[skinnylove02]

I'm sorry you have to deal with this so young ! I struggled with extreme anxiety prior to being diagnosed with IST and still do. I have two little boys and find myself feeling like a gramma aswell. I don't know of any other treatment options besides medication and ablation unfortunately. I would also love to see a electrophysiologist. I guess since they consider it benign they don't much care... I don't get how it can be benign a heart can only work so hard for so long ! My heart rate jumps to 180 just from walking up my stairs. It's so frustrating. I have hope for the future that doctors will be more compassionate to this illness because its so hard to live a normal life. Keep on trucking! We will make it !

I agree with you doctors take this condition to lightly. I think only IST patients really understand how life changing this condition is. It's not good to be living with a constantly high heart rate. Like you said it can only work so hard for so long. IST really limits your life, I can't imagine how hard raising two little boys with this condition must be. Talking to you has made me feel basically sane again as I started to believe it wasn't all real. Thank you for the support. I would love to keep in contact with you. Helps knowing someone somewhere is going through the same.

[jenlynrn]

I just spent the weekend in the hospital for chest pain and was diagnosed with the IST. They started me on metropolol but I don't think it has helped, still having chest pain. The Dr. when he discharged me told me to avoid stress and caffine. I don't know how I can avoid stress being a labor and delivery nurse!

[J_9]

I don't know how I can avoid stress being a labor and delivery nurse!!

I don't have IST, but I'm a L&D nurse as well. Asking you to avoid stress is like asking a patient to avoid the pain of labor. It's impossible!

[skinnylove02]

I just spent the weekend in the hospital for chest pain and was diagnosed with the IST. They started me on metropolol but I don't think it has helped, still having chest pain. The Dr. when he discharged me told me to avoid stress and caffine. I don't know how I can avoid stress being a labor and delivery nurse!!

Sorry to hear you have been diagnosed, it's a tricky condition and ever since I've been diagnosed I haven't led a normal life. I was also in hospital over the wkend with shortness of breath and chest pain etc and was hoping they would treat me for good. Instead I got told by one doctor it was all in my head he tried to arrange for me to see a physcologist in the hospital, I was extremely offended. He also old me only like two people in the whole world have IST and they just live with it and don't have any treatment at all, which is a lie. He called it a benign condition. However I did see another cardiologist the following day who was a little more understanding, he has started me on propanolol 40mg a day which is helping for the tachy but it's giving me bad dizzy spells and extreme tiredness. Are you always tachy or does the high heart rate come and go ?

[Silverrush]

I was also recently in emerge. It's very frustrating how they push you out with no explanation other than live with it. I'm suppose to go on a 4 hour flight in a week and I'm terrified all because of this !

[WEB47]

Hi, My name is Esmae , I also have inapproiate sinus tachycardia, and I am taking 25mg of Atenolol twice a day. I still get little bouts of tachycardia but its nothing like 140 b.p.m. I am getting used to them now but the trouble is I am putting on weight from the Atenolol. Any one else with the weight trouble from beta blockers.
Esmae.

[WEB47]

Hi Esmae again, I do get small bouts of IST at times but not like I had before since on the Medication of Atenolol. I avoid coffee, tea, soft drinks, sugar, anything chocolate or is a stimulant as this can start IST again. I find I can cope better if I follow this. When I get a small about of IST, I drink plenty of cold water which does help me, A Dr in emergency ward told me this. Yes it is very scary at times, but I also find if I walk about it also helps. It also helps to know that there are a lot of people with IST that know what it is like. We are not alone.

[Dcapelli22]

Hi there,

My name is Danielle (age 25). I too have IST. I've had problems sense I was a teen with occasional chest pains. About 7 years ago it became more frequent and high pulse rates became apparent. This year I had many issues. Had many tests performed (ekgs, echo, tilt table, stress test, cat scans and MRIs, halter monitors and had to wear an event monitor for 30 days). I have heard doctors say it's anxiety for many years until I saw a cardiologist. Lucky for me a physicians assistant was in there to listen to my heart beat weirdly and Hear the Cardiologist say it was because I am young, have kids, female, lazy and out of shape (oh yeah, did I mention I'm a ballroom dance teacher? Out of shape?? ). The physicians assistant presented her case to another cardiologist who told me I needed to see an EP specialist ASAP. They saw me the next day. Within 2 weeks I was in for an ablation (beta blockers and channel blockers made me too sick). Well now I'm over a week post ablation and have already had to wear a 24 hour monitor. They need to see me in a few days to discus farther treatment options.

[Dcapelli22]

Update:
I posted about a month ago stating I had an ablation for IST and within two weeks of it I was in for an emergency second ablation. After my first one my heart started pausing for three seconds (multiple times a day) at a time and was in junctional rhythm for some time after it kicked back in plus I was still having big bouts of IST with resting HR of 120. Then two weeks after my second ablation I was rushed to the hospital for an emergency Pacemaker implant due to pauses longer then 6 seconds at a time, Resting HR of 40 and always in junction rhythm. N

[WEB47]

Hi Sorry to hear about all you went through, I was wondering if you were on any medication. Hope I do not have to have what you did. I have not needed any ablations as yet. My pulse is always around 65 to 70. I dare not miss any medications. Hope you are feeling better and all is okay now. My thoughts are with you. Esmae.

[Dcapelli22]

I tried a low dose beta blockers which kept dropping my blood pressure so low I was passing out multiple times daily. My BP naturally is low. The. I tried channel blockers which I was told to "stop taking immediately" when I started turning yellowish and getting really sick.
It was quite a hassle going through all of this but it's nice knowing now that my heart won't race like that ever again. My heart is being paced a majority of the time because my sinus node is fried.

[SueL]

My daughter got IST at 16. She had been an extremely active, athletic teenager but after waking up one morning with IST has suffered for the last 5 years with a resting heart rate of 150 bpm that would jump to 200 with the least bit of exercise. She took metoprolol to reduce it to a resting heart rate of 100 but it would still jump to 180-200 with little effort so she has been unable to significantly exercise. In addition the metoprolol made her tired and she was prone to passing out particularly in the heat. Had trips to the ER a couple of a times a year when heart would start racing and meds would not slow it down.
After much personal research we investigated trying an ablation. This procedure is extremely unreliable for correction of IST. If they are not aggressive with the ablation it is not successful but if they are too aggressive they end up destroying the sinus node to the point where you need a pace maker which is not a good thing for a 20 year old to have if you can manage your illness with medication. The surgeon that was consulted on ablation agreed to write a prescription for ivabradine which is a medicine that has been used in Europe for many years and was designed strictly for treatement of IST. I purchase it through a Canadian pharmacy who obtains it from international pharmacies. It has been a miracle. She now has a resting heart rate of 70 and can resume all her old activities with no rapid heart rate symptoms. There have been no side effects from the drug. It is like we turned back the clock 5 years to the life she had before IST. This drug is not FDA approved and probably never will be because it is not economically feasible to market in the US for the limited use. I strongly encourage anyone dealing with this problem to ask their cardiologist to prescribe this drug. Your insurance won’t pay for it but you will have your life back