I was wondering if there is anyone out there who has experienced rapid heart beat with PV.
Over this year I have had numerous episodes of tachycardia and a few admissions to A and E with it. The A and E docs think it is probably superventricular tachycardia.
Fortunately, eventually, I have an appointment for cardiology in 3 weeks time.
I had a heart monitor on for a week recently but my heart decided to behaved its self for that week 🥺
Fortunately I had an episode last week at haematology when I was having a blood test so the nurss witness it, but it had stopped when I was hooked up to the ECG machine!
I was in A and E again last night as I felt really quite ill with it, chest pain ect but it stopped when I sat down to be seen!!
All test were OK and sent home 😔
My platelets are usually around 750 so this worries me when it happens due to clot risk.
My heart rate is usually around 200, and last upto an hour.
I have has this prior to my PV diagnosis but has been so much worse over this year.
Just wondering if anyone else has expressed this, I know from previous posts Hunter has, I think.
Thank you for any information or experience.
Sorry for the long ramble 😖 I am so fed up with it all.
Gillian
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I have also experienced tachycardia as well as PV. In my case, it was Paroxysmal Atrial Tachycardia. PV and tachycardia are caused by two different things. PV by the JAk2 mutation upregulating the activity of hemopoietic stem cells. Tachycardia is an electrical dysfunction in the heart caused by defective nodes that regulate heart rhythm.
While the two things are not directly related, the increase in inflammatory cytokines caused by the JAK2 mutation is an issue of concern. Systemic inflammation likely does the heart and arrhythmias little good. Certain forms of arrhythmia can also be a concern in terms of risk of blood clots.
The good news is that there are effective treatments for arrhythmias. There are medications that can really help for some types of arrhythmias. Calcium channel blockers worked better for me than beta blockers, ; however I ultimately opted for catheter ablation. The surgery was successful.
You ight want to consider some of the monitoring/diagnostic tools that are available now. The apple watch and Samsung gear watches can monitor heart rate and run a good 2-lead ECG. there are also devices that can run a 6-lread ECG, like the Kardia, which is FDA approved. I use both the Gear watch and Kardia.
Thank you for your helpful reply 😊It had gor so much worse sine my diagnosis of PV so perhaps the increased inflammation us not helping.
Given the choice I would opt for a catheter ablation. I have had beta blockers before and felt quit unwell with these, never tried calcium channel blockers.
I have a galaxy watch so have some 'evidence' for my appointment.
Many thanks again, will post after my appointment in 3 weeks time.
I did very poorly on atenolol. It made me feel lousy. Diltiazem was not as bad but exacerbated the constipation caused by the hydroxyurea I was on at the time.
The newer Samsung watches can also take an ECG. Hope you have on of those. It is useful data.
Thanks again, yes my watch is a new one and it gives a nice ecg reading, according to my paramedic relatives, not the best but certainly helpful. I have my appointment on the 29th so will update 😊
Glad to hear you will have some data on heart rhythm. The watch will give a 1-lead reading. If you find you want a bit more information, the 6-lead Kardia device gives more information. I do share the 6-lead EKGs with my cardiologist when we meet. They will also detect if the arrhythmia has progressed into A-Fib.
It is helpful to understand more of that the cardiologist is looking at. This video is very helpful to understand the basics of what an EKG is showing.
Although I was diagnosed with SVT many years before PV - mine was successfully picked up while wearing the ambulatory Holter monitor. Heart rate was 279 at the time and lasted for many hours. I didn't experience chest pain with it, but used to feel very dizzy, faint and breathless.
The SVT is now controlled by Verapamil (120 mg twice a day), I was originally prescribed Beta Blockers, which didn't work for me and made me feel awful.
It must be so frustrating for you that it 'behaves' itself during ECG. Hunter's suggestion is spot on, and I hope you get it sorted soon.
Catheter ablation was mentioned when I was first diagnosed, when they spoke of treatments. But as Verapamil works so well, with no side effects, I've never requested it. However, if in the future, Verapamil stops working I would definitely consider it. Anything rather than having horrific SVT episodes.
I hope your Dr accepts your smartwatch findings or at least sends you for further investigation. Kari.
Hi I have been having palpitations and high blood pressure for the last few weeks.... I started taking Hydr for about 6 weeks now and just wondered if anyone else is having any similar problems. Had an ECG and there was a slight blip waiting for more tests.
Hi MargaretSorry to hear you have been having problems too. I am not on HU so I guess you will be guided by your team on this. I hope you get your next tests soon and get to the bottom of it.😊
SVT [SV= Supra Ventricular- meaning that the triggering electrical impulse is originating in the structures of the upper hear, and not in the bigger chambers called ventricles] Tachycardia [simply rapid heart beats] can be triggered by many things, and sometimes [maybe most often], by nothing specific.
However, like almost anything and everything else, it certainly can be made worse by PV and its ever-attendant, but perhaps poorly recognized systemic inflammatory syndrome[s].
That said, SVT in and of itself, with or without PV is rarely, if ever, a significant promoter of any kind of clot anywhere. That problem lies pretty much solely with atrial fibrillation [AF], and mostly occurs because in AF, unlike in SVT the upper chambers of the heart [the atria] don't pump any blood, they just 'flutter' or quiver, which means that despite most of the blood still being channeled into the ventricles, some fraction of the blood there is static or stationary and prone to clotting.
My nephew was in his mid-20's, on a 3-month deployment [inside] a nuclear missile submarine, when his first episode of SVT occurred, and luckily it was both short-lived and ended spontaneously. In fact, it was initially misdiagnosed as GERD, because no one expects a young seaman [excuse me, submariner] in his prime to have any cardiac issues, but eventually as the episodes continued, they progressed to both be more intense and of longer duration.
Fortunately, his last one occurred after he mustered out of the USN, as his hear rate was in the high 300's, and his heart got so irritated that he technically had a [the mildest of possible] heart attack- in that his cardiac enzymes elevated enough to require that diagnosis.
It was his last episode because when they identified the triggering aberrant electrical node, they did an intra-cardiac electro-ablation of it, and he has been fine ever since. He also didn't tolerate the medical therapy well, so its resolution was a godsend for him.
I hope this helped and that I didn't scare you worse than you might already be, it really shouldn't be life-threatening even when it feels like it is.
Thank you for your reply and information, it is very scary when it's happening and I feelquite unwell at the time, you do fear the worst! I hope your nephew is doing well .
You are so welcome, I hope it was some small help.
I have rarely had any issues with my heart rate or rhythm, but based on the few brief instances I have experienced, I can only imagine it is terrifying.
I hope your issue gets resolved as quickly and painlessly as possible.
My nephew has been digustingly healthy ever since the ablation stopped his episodes.
Interestingly, the interventional cardiologist warned him that he might actually continue to experience the prodromal symptoms [apparently he usually felt some odd sensations that happened before each of the the SVT episodes], but that when he did he should just chill out, because they would eventually extinguish themselves once the source of the aberrant impulses had been destroyed- which proved to be true.
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