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    • #21602
      Brittany Foster
      Keymaster

      I know that for many with PH, the disease can have an impact on the heart and heart function. I am curious about how many take medications for their heart on a regular basis. I am on a few medications for my heart due to my congenital heart disease, but I have been bumped up on dosage of a few medications due to the stress of needing oxygen and having low oxygen levels.

      For my heart I am currently taking a high dose aspirin every single day to help prevent against clotting and reduce the risk of stroke. I am also taking a beta blocker medication to help with arrhythmia and help the heart function better. I also take lasix which takes some of the stress off the heart if there is too much fluid in the body.

      What (if any) heart medications or medications to help your heart function do you take ? Do you know the reasoning behind taking these medications?

    • #21603
      Kevin Smith
      Participant

      A couple months ago I noticed I was getting palpitations. Turns out the cardiologist believes them to be supraventricular tachycardia, or SVTs. While they are said to be not life-threatening, they are astonishingly annoying and anxiety-producing. We are trying 30mg Diltiazem every 6 hours and it seems to help a little, sometimes yes sometimes no. I am trying to figure out what the triggers are, if any. It is frustrating. I’m not sure it is PH-connected.

    • #21605
      Brittany Foster
      Keymaster

      Hi Kevin,
      I have heard of others on this medication. How were the SVT’s found? I also have this type of arrythmia and am on the medication which is the beta blocker for this. I know the feeling of being in SVT can be scary. were you given a holter monitor to find these arryhmias or was it detected during an EKG? Sometimes they can do a procedure called an ablation and find where in the heart it is misfiring and causing this to happen. Do you have an electrophysiologist

    • #21612
      Colleen Steele
      Keymaster

      Just like Kevin my son was placed on Diltiazem later in his heart disease. Prior he was also on beta blockers and eventually IV milrinone for heart failure. He has taken Magnesium with his PH and post transplant. That is also for the heart.

      • #21624
        Brittany Foster
        Keymaster

        I know a lot of CHD patients who are also taking the diltiazem. Is that for the heart rate control? I know people who take that for arrythmias but not sure what the reasoning behind your son’s medical need for it was.

    • #21651
      Jimi Mcintosh
      Participant

      I stopped the aspirin daily years ago, because of stomach issues, I Cassio all
      Bleeding and the blood thinners that I was on , after repeated blood clots. Now, researchers are saying that the aspirin is just as effective as “Xarelto, lovenox and warfarin, I do
      Not know what is safe to take.
      I take Losartan, Metoprolol, Hydralazine, formerly on Coreg, Bystolic, Alodopine. Aiming towards heart meds that open up arteries and promote more blood flow

      • #21668
        Brittany Foster
        Keymaster

        That is the goal for a lot of us on these medications to help open up out arteries so we are able to get more blood flowing and more oxygen to the areas of our body that need it the most! I heard before that aspirin can cause stomach problems but I know that the benefits outweigh the risks for me, especially with my bypass graft that is 50% closing. It is better safe than sorry so I try to take it every day as I’m supposed to.

    • #21648
      Kevin Smith
      Participant

      I had four days on a pasted-on monitor and it revealed the SVTs. The fact that I take a highly diluted form (which I mix myself with sterile water) of oxymetazoline (“Afrin”) for chronic, annoying, sleep-stealing nasal congestion (which I only take at night) may have something to do with it, but they happen even when there is no more “Afrin” in my system. I am having turbinate surgery next month to open up – slightly – my nasal airways so that should help a little, inshallah.

      Took beta blocker metoprolol 2013-2014 but it gave me what I thought was COPD-like symptoms of SOB and fatigue, when in retrospect now it might have been the beginning of PH…no one thought to test for that, then, though. But at least the Selexipag and TAdalafil are both helping.

      Curiously, I also find that drinking a can of low sodium V-8 seems to help, too. I have a feeling it is the big boost of potassium that V-8 has in every can, but especially in the low sodium version (30% of daily requirement, plus I can make myself feel noble and get very smug because I am “eating my vegetables”).

      • #21661
        Colleen Steele
        Keymaster

        @ksmith610 due to kidney disease that my son developed after transplant, he struggles with high blood pressure. He is on a very high dose of metoprolol. He hasn’t experienced the side effects that you mentioned but I’m glad that you did. I’m going to keep that in mind in case he starts to complain of these issues, especially since this medication continues to be increased.

      • #21669
        Brittany Foster
        Keymaster

        Kevin,
        That is interesting about the v8, maybe there is something in it that is really helping your body ! It could be the potassium, you are right ! I know that others that have been on metoprolol for their heart or blood pressure have also had this happen or have had really worsening fatigue. Luckily I did not get this symptom. I think that my team of doctors weren’t afraid to add heart medications that could potentially slow down the heart rate because then my pacemaker would kick in! But for others, it could lower it to too low of a level and that can be where a lot of the symptoms are coming from.

    • #21676
      Rebecca Talkie
      Participant

      I have a feeling this is going to help no one as I have a completely different kind of Pulmonary Arterial Hypertension. I have vasoreactive PH which is apparently connected with my congenital heart defect that was fixed back in 1959. ( I was one of the first to have heart surgery at Good Samaritan in Dayton, OH – a hospital that was just torn down. So I am on a calcium channel blocker – Cartia XT 120 which was just increased to Diltiazem 24H ER 180mg. I am not having quite as many dizzy spells but still have shortness of breath. My first 6 min walk test was not bad, my O2 sats remained in the 90’s although I used to stay 99 – 100% before all this. They are calling this a WHO I and idiopathic. I have the rarest type of PH and it is the most treatable. Why do I still feel like a mess? My husband wants to go to Israel with our church group and I don’t dare because I can’t keep up. I have done nothing in the past 6 -8 weeks but gain weight. I am already on medication for depression.

      • #21678
        Brittany Foster
        Keymaster

        I am sorry to hear about how hard all of this is for you. Know that you aren’t alone in this. My elevated PH pressures with activity is like that actually and is in part due to my congenital heart disease. My vessels constrict and have a hard time responding appropriately with activity and the output demand is just not enough. My oxygen levels drop into the 80s with activity so I am on oxygen which does help with the symptoms like shortness of breath. Was your breathing a little better before the calcium channel blocker was given?

      • #21686
        Colleen Steele
        Keymaster

        @becca Rebecca, there is always a possibility that what you share is going to help someone, so never hesitate to share. I am so sorry to hear how much you are struggling but I hope you know that it is understandable. I am going to post a topic tomorrow about vasoreactive PH and see if we can gather more patients who can relate to this rare type of PH.

        You are not alone with your symptoms and your feelings. Many within our forums can relate and we are here to support you.

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