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    • #24997
      Colleen Steele
      Keymaster


      @gayle-meagher
      would like to know if anyone has experienced hearing loss while taking diuretics; or, is hearing loss due to PH?

      We thought my son was having hearing problems but it turned out he needed tubes. Those helped a great deal. However, I personally think that sometimes his pulmonary pressures and even the vasodolators sometimes temporarily interfered with his hearing.

      Please chime in and share your experiences with us.

    • #25005
      Jen Cueva
      Keymaster

      Hi @gayle-meagher, this is certainly a concern that I have heard of before. I remember talking with others who have had these issues.

      For myself, I have issues where it feels like my ears are plugged, and I am often talking louder because I think I am talking norm. I know that some diuretics can cause some issues with hearing, including hearing loss. Many other medications can also cause problems with hearing.

      I a sharing a link from Michigan State University. This link talks about some medications that may be the culprit. Lasix(furosemide) is on the list. I find the part about those with kidney disease interesting. I have CKD, do you? If so, that complicates things even more.

      Colleen also brings up an important factor, too, the pressures, as well as some vasodilators, may affect the hearing, too.

      Do you have your hearing tested periodically? I have not in years, but every time this is brought up, it reminds me to check on this.

    • #25011
      Joanne Sperando
      Participant

      I developed tinnitus in 2011 (after 13 years of PH). I was told it was due to the high doses of sildenafil or digoxin. Or both. I only have used diuretics sporadically. When I went to an ENT doc, he said I have hearing loss. The constant ringing stinks.

    • #25017
      Colleen Steele
      Keymaster

      @joanne-sperando-schmidt my dad has had constant ringing in his ears for the past 10 years. It’s a difficult symptom to have to live with and I’m so sorry that you are experiencing it. Is the ringing permanent for you or is there hope that it will clear?

    • #25019
      Joanne Sperando
      Participant

      Unfortunately it’s permanent Colleen. At least that’s what my ENT says. I’ve actually taught myself to ignore it, for the most part.

    • #25020
      Colleen Steele
      Keymaster

      @joanne-sperando-schmidt I’m sorry to hear that. My dad’s is permanent as well and I think it’s just become his normal now. I think he relies on reading lips so talking on the phone is a challenge for him. I live in WA state and he is in NJ and I don’t get to talk to him as often as I would like because of it. My mom will often stay on the line when we are talking so that she can help him. Is phone calls difficult for you too?

    • #25023
      Joanne Sperando
      Participant

      my loss is only in the upper ranges, so no, I don’t have trouble on the phone. I have trouble in crowds though and I’m a terrible lip reader. Colleen, don’t they have a device you can attach to dad’s phone to boost the sound level for him?

    • #25029
      Jen Cueva
      Keymaster

      @joanne-sperando-schmidt, I am sorry to hear that. I have mostly plugging of my ears and have noticed a little bit of hearing loss. I have yet to see an ENT. But, after reading your story and others, I need to make an appointment. I have had PH for just over 15 years, been taking Revatio that long and other meds. I would not do well reading lips. I have heard that this gets better the more you use it. Do you find that to be true for you?

      Does anyone ever feel like their ears are hot? It is almost like a fever. I am contributing it to vasodilators so far.

    • #25030
      Jen Cueva
      Keymaster

      @colleensteele, I am sorry to hear about your dad’s hearing loss. That certainly makes it difficult over the phone. Would Facetime work better for your calls to your dad? I know that you can do it now. Have you tried that yet with them?

      Speaking of your dad, isn’t his birthday in August? Have y’all decided yet about making that trip? That must be a difficult decision right now. I hope that y’all can make it.

    • #25045
      Joanne Sperando
      Participant

      Jen, I’m not sure what you mean about something getting better the more you use it? And I think the hot ears is probably due to the vasodilation effect.

    • #25047
      Colleen Steele
      Keymaster

      @joanne-sperando-schmidt my dad has an appointment coming up and I will have him as about the device for the phone. As @jenc mentioned I’m hoping to fly home for his birthday in August depending on the Covid concerns at that time. I’m going to evaluate things while there and see what options I can find to help him. Due to his age I know he is experiencing regular hearing loss but the ringing in the ears makes it so much more challenging for him.

    • #25072
      Rebecca Talkie
      Participant

      Anyone with any kind of hearing loss or tinnitus should be evaluated by an ENT. There may be some help for you. I do have hearing loss but I was diagnosed years ago before my PH popped up. I have an inherited condition called otosclerosis. I jokingly call it osteoarthritis of the ear because technically that is what it is. One of the small bones in my ear canal, the anvil, hardened and would not conduct sound. My earliest symptom was the tinnitus and of course the inability to hear in crowded or loud places or with multiple people talking at once. At first they though I had a tumor, the name of which just escaped my brain. That was found not to be the case and I was prescribed a hearing aid. I am NOT vain about it but it hurts to wear it so I was not real good about it. But all of a sudden my hearing just fell off a cliff and that is when they found the otosclerosis. I got it from my Grandmother who I remember experienced something similar but remained in denial for what was left of her life. I was fortunate to live in the Greater Cincinnati area where we have an Surgeon who is an expert in the surgery for it. So I had a laser surgery and they replaced my anvil with a piece of wire. I still have to wear a hearing aid because I have two types of hearing loss. One was fixed and the other can’t be. But I was nearly deaf in that ear so I am grateful. Long story short, don’t just except hearing loss as a side effect of aging or medications. There is a lot of new technology in diagnosis and treatment. See an ENT, preferably at a large medical center.

    • #25077
      Jen Cueva
      Keymaster

      Wow, @becca, that must have been a scary time. I’m grateful that they found the issue and could help with some of your hearing. Interesting that this was hereditary.

      I do agree with you, so much technology today and continuously changing, there is usually something to help with most ailments.

      I do have an ENT on my list, but honestly, it’s near the bottom. Once I start real-life appointments, I have so many to catch up on, like everyone else.

      I know for me, it’s more like my ears are plugged. It can happen in one or both, and a few times, I notice that I have to up the volume on my phone. Thank you for sharing your story.

    • #25161
      Colleen Steele
      Keymaster

      The following is a comment and question from @adelemischel.

      I have indeed experienced significant hearing loss, however I do not know whether it is from PAH, or age, in a natural progression. I would love to find some answered on this based on research.

    • #25176
      Jen Cueva
      Keymaster

      Thanks for sharing that question for @adelemischel. I, too often think mine is due to a bit of all of that she mentions. I believe that we share information from each other’s experiences and our research.

      When I searched earlier, I was looking for a credible source, but the one I did find is locked to medical professionals. If anyone finds anything, feel free to share the research here. If I find anything, I will do the same.

    • #25187
      Carol alexander
      Participant

      Yes I think so it could be the Sildenafil or ph but my hearing has really decreased
      carol A

    • #25195
      Colleen Steele
      Keymaster

      @carol-alexander my son was on Sildenafil as well and although it was never proven, I think it contributed to hearing problems that he had. Have you had your hearing tested recently?

    • #28441
      Jimi Mcintosh
      Participant

      Yes the hearing loss after using diuretics is real. It gets progressively worse when you have fluid retention and upped the Dose to compensate. I have had a moderate hearing loss in right ear since Vietnam era and I am finally getting the VA to listen and provide a hearing aid. One ENT said it was similiar to an ear ache, except that it dries the fluid in the middle ear. They recently put me back on warfarin and combined with the Lasix it is bad.

      • #28444
        Colleen Steele
        Keymaster

        @jimi I have heard that diuretics can contribute to hearing loss. BTW…the previous post about having an on-line hearing test was removed. That person turned out to be a spammer. However, they did bring up a good topic.

        My son had ear pain and hearing problems all through childhood, but he also had those problem prior to his PH diagnosis so it was hard to pin-point where the issues were. He had hearing tests, saw doctors and always told it was a wax build-up. However, post-transplant he did develop serious hearing loss and was experiencing pain. Turned out his ears were draining and he need tubes placed. That was 5 years ago. They are still in and working great. No problems since.

        But you say your is more the fluid drying up in the middle ear. Along with the hearing loss is that painful? It sounds like it would be. How is the change in treatment working for you?

    • #28448
      Liz Reyes
      Participant

      My ears have been ringing loudly for years …dont remember when it started . I am newly diagnosed, don’t really have much info just yet. Finally have double cath appt in place 1/7 .

      • #28452
        Colleen Steele
        Keymaster

        @la66reyes forum member @joanne-sperando-schmidt has experience with ringing in the ears. Joanne, do you have any advice to give her?

        Liz, it’s good that you have the cath appointment scheduled now. That will hopefully tell your doctor a lot and help further treat you. Please remind us as you get closer to the date so we can offer you support and prayers.

        • #28469
          Joanne Sperando
          Participant

          Sorry, not really. I sought out an ENT who gave me a one-sheeter on the condition but he says there’s nothing I can do to really address it. One of the posters above recommended seeing an ENT at a larger center and I think that’s wise. I’ve learned to live with it, but sometimes it bothers me more than others.

    • #28451
      Cynthia
      Participant

      I most certainly have experience loss. About 3 years ago, went to the ENT doctor cause I felt underwater in one ear. He assessed me with hearing loss, past infection and put ear tubes in, problem solved. Fast forward, went through a crisis, increased water pills, and an antibiotic due to predisone and here we are again. I just read an article that diuretics most definitely cause hearing loss, they are called loop diuretics i.e. Butamide, Lasix, etc. I forgot the name, but just read maybe a week ago. All I can add is diet is very important, take care of your kidneys and liver for efficiency. No pops or sodas if you are from the south, alcohol, salt or things that injure kidneys and liver. Also, I read that the lungs are the actual pumps of the blood, the heart helps, it makes sense to me. Lungs move the oxygen.

      • #28453
        Colleen Steele
        Keymaster

        @cynthia-winston there is loads of good information in your comment, thank you! I wish I knew about the effect diuretics can have on hearing when my son was taking high doses of them. I started learning about it after his transplant. However, he had to take the diuretics, there was really no other option so I’m not sure what can be done if hearing loss starts to develop.

        He has kidney disease now caused by immunosuppressants but there is suspicion that kidney injury was in it’s early stages when he had PH. He is so good about staying away from caffeine, he has no interest in alcohol (he’s 21 now) and he has himself on a strict low sodium diet. Personally I don’t know how he does it. I wish I had his kind of will power.

        How do you manage Cynthia? Is there a special diet that you follow? How do you manage?

    • #28459
      anne
      Participant

      I saw an ENT and he said my eustasian tubes would start to close and that was causing my intermittant times with “deafness”. I can pop them open a little bit by yawning, buy they like to stay closed. Nothing can be done for them except hearing aides.

    • #28463
      Jimi Mcintosh
      Participant

      I had been working on the VA to finally provide a hearing aid , after the lawsuit over hearing loss due to weapons fire, while on active duty. Covid put a brake on going outside to get treatment. Now they are requiring that I get a MRI & CAT scan for a tumor in the inner ear.

      My new answer to these doctors since being diagnosed with PH, let me tell you what I do not have, that list is very short. My hearing has gotten progressively worse with PH and the multiple meds required to treat alllof the issues being uncovered. I am optimistic that the development of the covid vaccine will bring other treatments and hopefully improve the quality of our lives. We are living in the shadows and are truly suffering from PH, young and old. I have to keep myself pumped up.

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