Has anyone been diagnosed with Inappropriate Sinus Tachycardia?

I think many ME sufferers have various arrhythmias. I have blood pressure problems and have been hospitalised three times over the years with Atrial Fibrillation episodes where my HR was reaching the 180s and was given cardiversion. Normally though my heart rate is down in the fifties !

As I say, arrhythmias of various types tend to be common in ME patients and presumably your specialist should be aware of that....

Hi

I've got high blood pressure that they can't bring down unless I do nothing. They've tried me on all tablets going and I'm at the maximum dose. The consultant basically said there is nothing more she can do. I also have a high pulse rate from around 100-112 beats a minute. At the moment I just have to live with it.

Paz

Oh Claire can you explain exactly how you were feeling please as i have M.E. Never heard of this IST but may explain a few things. I wonder how many people have this and dont know it or of it in most cases.

Sue 

what is IST?

Hello Claire,

​I have heart rate racing due to my M.E. this can happen when I walk up the stairs / stand up for a while / then suddeningly when laying down. It can also happen when I get a little bit tense.  The worse problem is walking up a hill or when I get hot.  I have to use a mobility scooter due to the standing or walking up hill reaction to the heart rate (I'm only 38).  The dangerous times is when I over heat.  If I get too hot (difficult as my internal heat reaction system has been affected by the M.E.) I will faint and feel really sick.  This has happened 3 times so far, now I know the problem I try to keep myself cool which is very difficult.

​Although my gp has tried to get the Cardio at the hospital to see me indicating that the heart rate even increases when I'm on the toilet and when I am asleep, he won't see me as he says it's just part of M.E., he can't do anything.

​I don't have any blood pressure problems thankfully.

​Julie xx

I have experienced an increase in heart rate up to 140 seemingly out of the blue since I was diagnosed 3 years ago. The day I first became ill I had what initially looked like a stroke. The symptoms would pass but it I had several more of these episodes. I began having random increases in heart rate that seemed to be out of the blue - sitting, standing, resting or moving. I went to see a cardiologist, pre-ME. Diagnosis, and had a Doppler scan, an echocardiogram, a 24 hour holter monitor and a stress test. During the stress test I was only able to walk instead of not because I have ataxia but my heart rate went up after 5 minutes (i believe the test is usually 15). While in the room with the cardiologist I started feeling very light headed and dizzy and had a hard time talking. He brought in an ekg machine right away. He said the holter monitor and this ekg showed rises in heart rate as well as skipped heart beats but it was not coming from my heart. I couldn't understand this at the time.

Fast forward to my diagnosis when I saw an ME specialist I discovered that it is a symptom. She also told me that research is currently showing that we may have inflammation in the central nervous system which may account for this.

I used to panic when my heart rate did this. Now I know it's a sign to stop doing what I'm doing and do some meditation. I can usually get it to go right back down within 5 minutes. My sister also has ME and has this same exact experience.

I had never heard of IST so researched it and it appears that it's of an unknown cause although one may be auto immune or problems with the autonomic nervous system. This would make sense, especially if tests show no physical problem with your heart.

If you're able to watch that movie I posted about earlier they actual do talk about heart rate. It's in the part entitled "government" I think.

Hope that's helpful! If not, you're definitely not alone

Tracey

I am a 20yo healthy female. I was diagnosed with IST in July last year after about 12-24 months of symptoms. In that time, I saw three GPs and each dismissed my concerns. I was having shortness of breath, dizziness, intense nausea and I would almost collapse whilst exercising. I developed an exercise intolerance and I consistently had a "racing" sensation in my chest. I was constantly fatigued and even simple tasks like taking a shower or doing the groceries exhausted me. I would have periods of several weeks where I really couldn't do anything. I was finally referred to a cardiologist after a holter showed frequent ectopics and an average daily HR well in excess of 100. Thankfully, my cardiologist recognised my symptoms almost immediately and after a stress echo, ECG, blood work and a chest xray he was confident that IST was the cause (although no underlying cause for the IST has since been identified). I started taking Coralan (ivabradine) 7.5mg twice daily and my quality of life has improved like you wouldn't believe. Whilst I don't have ME (to the best of my knowledge), the IST was debilitating. My resting HR has now dropped to a healthy 60BPM and I am able to exercise again. I have more energy and my symptoms are far more manageable. I still have the occasional downturn but it is nothing like it used to be. Many doctors don't understand IST so it is good that you have found one that does! Ablation won't treat IST although medication will keep it under control. I was advised that I could instead trial a beta-blocker as the ivabradine was a relatively new treatment for IST (I think some countries don't even allow it to be prescribed for that purpose) but that there were fewer side effects (many of which were only short lived). If IST is confirmed, I highly recommend talking to your cardio about trialing ivabradine. I ran 5km without issue two weeks after starting treatment, something I have never been able to do in my life! Good luck and keep us posted

I am a 22 year old female, I was diagnosed 10 years ago. I have received 4 heart ablations and they recently told me they are wanting to do an open chested surgical ablation. Has anyone heard of this before? They just recently did a balloon procedure to prop up my phrenic nerve. I've searched the web high and low but can't seem to find out anything about this procedure. Please let me know your experiences if you have any. Thank you.