This topic contains 21 replies, has 7 voices, and was last updated by  Brittany Foster 7 months ago.

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  • #14360
     Anthony Collins 
    Participant

    I would be greatly interested to learn if any PAH patients on oxygen therapy have experienced a reduction in arrhythmia episodes (fast atrial flutter, in my case). Should there be any literature on this topic I would also very much appreciate direction to it. Thank you.

  • #14361
     Kathleen Sheffer 
    Keymaster

    Great question, Anthony! @brittany-foster may be able to speak more to this. I did not experience many arrhythmias myself, but I will try to do some research on the subject.

  • #14375
     Brittany Foster 
    Keymaster

    Hi Anthony,
    Great questions ! I also had arrythmias (SVT and atrial fib) . Since being on the oxygen, my amount of arrythmias have decreased. I am pacemaker dependent also so if I were to have an arrythmia they would note it when I go to get it checked every few months. The oxygen is probably reducing some of the work of the heart and making the electrical activity less chaotic would be my guess! Are you taking any medications for your heart arrythmias? That would be something to definitely talk about with your doctors and maybe they would know where to find any research on this too! I will bring it up to my doctor next time too!

  • #14425
     Anthony Collins 
    Participant

    Hi Kathleen and Brittany

    I am grateful for your replies and for your interest in the query. Next month I will have been on anti-arrhythmic medication for a quarter of a century. The dose was increased a while back, without any perceptible benefit. The theory that oxygen supplementation might have a positive effect upon abnormal cardiac electrical activity does appeal to me.

    • #14426
       Brittany Foster 
      Keymaster

      It definitely has helped mine and my pacemaker recordings prove that to be true ! My doctor thinks it benefits it as well. Ask about it for sure! Are you already on supplemental oxygen?

  • #14432
     Anthony Collins 
    Participant

    Thanks, Brittany. As I have just gone onto nocturnal oxygen therapy in an experiment to see if it will control my AFL, your experience gives me hope.

    • #14448
       Brittany Foster 
      Keymaster

      I’m glad I can provide you with some hope Anthony. I noticed mine were happening at night too and had a sleep study and they found I was having central sleep apnea at night. I would wake up with a fast heart rate that felt pretty chaotic every beat. Have you been tested for a sleep study or are they just starting with the oxygen now to see how things go at night?

  • #14444
     Douglas 
    Participant

    Hi All, How appropriate to bring this issue up just now. I have been on long-term O2 therapy for more than six years (3.0-3.5L at night or as needed). My needs have increased over the years and now I’m on oxygen 12-16 hours a day. While I have always had episodic tachycardia and my base heartbeat would run from 90-115 bpm, last month I went into atrial flutter (138 bpm consistent for 10 days). I didn’t really feel it but did get tired from any exertion (not that unusual for us with PH). Nevertheless, I went to see my cardiologist and he sent me right to the ER – they could do nothing with any of the medications they tried. All they did was lower my blood pressure but not heart rate. Long story short, the next day they performed a cardiac ablation. That was in mid-September (2018). Since then my heart rate has been all over the map (I was told to expect that) from 56 bpm to 125 bpm. This last week it seems to have settled back to my original comfort level of 90-115. I have no idea whether my oxygen therapy contributed to the arrhythmia or not but it appears that it can be controlled. Hope this helps!

    • #14449
       Brittany Foster 
      Keymaster

      Hey Douglas,
      in your response are you saying that you think the oxygen therapy has helped to get your heart rate more stable or that it made it more chaotic for you? For me, it definitely has slowed the amount of episodes that I’m having and when I get tachycardia it’s not as sustained as it used to be ! I hope they can find good medication therapy to help you better manage this! I know how uncomfortable it is to experience these increases in heart rate. Do you get other symptoms when it increases this high? For me, I experience light headed feeling and dizziness upon standing when it gets too high.

  • #14452
     Jen Cueva 
    Participant

    Hi Anthony,
    I, too, have had and still have arrhythmias, the oxygen definitely helps with it, not always resolving it but I tend to have less episodes. I also found once I started the stronger meds, Prostacyclins, ( Orenitram, now Uptravi ) with my other PH meds, that my episodes also decreased. Definitely having the arrhythmias and tachycardia is not a good feeling , but I continue even after 13 years to have these symptoms off and on.
    I hope the oxygen at night helps you some.

    Douglas,
    I’m not sure if the oxygen has affected your arrhythmias or not, I have heard that high flow oxygen for extended periods of time does have side effects. But, I also know several other PHriends that have had ablation and it helps them for awhile, but one , I know had had to have or done every few years. I hope that you can get some relief and help . I know the tachycardia is definitely scary and I a
    Ways tell me PH Doc, when it gets to a certain point I feel it’s going to flop out on the floor, lol

    • #14476
       Brittany Foster 
      Keymaster

      Hey Jen,
      Have you ever had an ablation for arrythmias? I have had an attempted one but they couldn’t do it because it was too close to the phrenic nerve and would risk diaphram paralysis! So I have a pacemaker and take meds for mine now.

  • #14453
     Anthony Collins 
    Participant

    Hi again, Brittany

    The vast majority of my tachycardic episodes have begun quite late at night, while I am still awake. This has been the case for years. I suspect that finally relaxing in front of the TV or with a book is the trigger. (No, horror and action are not my genres!) Waking with tachycardia triggered during the night was a very recent development. I began using the oxygen as prescribed – for ‘sleep’ (when I could tolerate the nasal congestion and some bleeding!)- but that did not prevent bouts of “tachy” while awake, though I believe that reaching for the oxygen at onset may have substantially reduced their duration. Currently, as soon as I relax at night I put the cannula in my mouth – I find it equally comfortable there and, unlike the intense pressure on the sinuses, the oral dehydration is easily solved. Oxygen administration runs from then till early morning. I have not had an episode since starting this practice. But it is very, very early days yet.

    • #14474
       Brittany Foster 
      Keymaster

      Hi Anthony,
      I always was more aware of my faster heart rate at night too. I feel like for me, this was because I was finally relaxing and not distracting my mind with other things. It can become uncomfortable to “sit with” our physical symptoms instead of trying to distract ourselves from them. I hope you are able to see some improvement in the length of your arrythmias or a reduction in how often you’re having them, like @jenc said, mine didn’t completrly resolve but they definitely got less than what they were !!! Keep us posted on how it’s going and any changes you are noticing. Be sure to write down both the positive and negative to show your doctors.

  • #14455
     Anthony Collins 
    Participant

    Thanks Jen. I’ll let you know once I’ve let the experiment run long enough.

  • #14458
     Shane 
    Participant

    I’m Shane. I have had O2 therapy since dec w2016. At first I mistakenly thought I didn’t need it much but that idea changed fairly quick. I recall as almost a distant memory, still shopping for myself without the aid of my O2 tank. Though now I figure that was another miscalculation and also I could be blurring it with memories b4 I needed supplemental O2. I’m seeing a PH specialist and have recently been able to decrease the amount of O2 I need. I was up to 3 liters but now 2.5 liters seems to be working well. This doesn’t have much to do with O2 treatment and how it affects cardiac arrhythmias.

    • #14475
       Brittany Foster 
      Keymaster

      Hey Shane,
      Like you. I have “thought” or tried to convinve myself that I didn’t need it. Walking for a short distance and sitting seems okay for me without the oxygen, but if I have to do any length of walking and decide to “forget” my oxygen in the car, I start to see black spots and get very light headed and dizzy. It’s best not to fight against the supports we have been given. I’ve learned this the hard way. I’m glad you have been able to decrease your oxygen a bit!

  • #14528
     Douglas 
    Participant

    Hi Brittany and gang! I’m sorry to be so long in responding to your question about my original comment. In short, I have no idea whether my O2 triggered the arrhythmia OR whether it helped after the ablation. Personally, I don’t think the O2 had any effect one way or the other. Like others, I tend to have my tachycardia episodes in the evening. I take 25 mg of metoprolol every evening and if that doesn’t do it, I just take a Xanax and go to sleep. It’s almost always slowed down again by the morning. Hope this helps!

    • #14534
       Brittany Foster 
      Keymaster

      Hi Douglas,
      I’m glad you are managing this with medications! You know your body best! Thanks for getting back to us with the update.

  • #14776
     Jen Cueva 
    Participant

    Sorry Brittany, I just saw the ablation question. I, myself have not had any , but have heard one PHriend has had several and another who had it once. I do know that all arrhythmias cannnot be treated with ablation, such as you described.

    • #14780
       Brittany Foster 
      Keymaster

      There’s certainly an emotional toll that goes along with unsuccessful ablations too. Whether it’s out of fear of needing another one or just the frustration of the first times not working. I totally understand where people are coming from when they are upset when it doesn’t work as well. If being on medications helps to control mine then I have no choice but to do it.

  • #14833
     Lisa Michele Mikolajczak 
    Participant

    I’ve been on oxygen 24/7 for over 28 years. The only noticeable arrhythmia I had up until 2013 was occasional tachycardia. In 2013, I developed atrial flutter for which I had an ablation. Unfortunately, the ablation’s success only lasted a couple of years. Now I enjoy a smorgasbord of arrhythmias including atrial flutter, atrial fibrillation, bradycardia, pvcs, and pacs. I also have a right bundle branch block and another second degree heart block. Since I can’t take medications to treat the afib or flutter because of The bradycardia (my usual heart rate is in the low 50s), the best course of action is a pacemaker and then medication. Since I’ve had 3 open heart surgeries, the arrhythmias are probably due to scar tissue. Oxygen doesn’t seem to have much of an effect; however, I do notice the pacs/pvcs worsen without it.

    Lisa

    • #14840
       Brittany Foster 
      Keymaster

      Lisa,
      Our arrythmia battle seems very similar. I had a cardiac pacemaker placed in 2013 because I was having episodes of cardiac pauses for more than 8 seconds. I went from bradycardia to tachy . After the pacemaker and before the oxygen I started having recorded episodes of atrial fib, svt, and more PVC. When I got the oxygen, it lowered the amount of times I was having this. They attempted to do an ablation for me but it didn’t work because of the proximity to the phrenic nerve (don’t want to damage that). Now they are able to up the beta blocker as much as they want because the pacemaker is set at a rate of 60 so it can’t get below that no matter how much medication I need to take. Are you considering the pacemaker/ is this an option right now for you? It has helped me a ton so if you ever have any questions or want to chat, feel free to message me any time !

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