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    • #24026
      Brittany Foster
      Keymaster

      I have glasses and ended up needing them in college after having 20/20 vision for most of my life. I attribute this to the hours spent at a computer screen during my freshman year of college. Honestly, I was studying almost 4 hours every day and reading small print books for my Western Civ class.

      I usually go to the eye doctor once a year, but definitely have to think about making a sooner appointment. The last time I went, he noticed some broken vessels in my eyes and said that the dryness and vessels of the eyes being broken could have to do with all of the pulmonary effects going on and the low oxygen levels. I didn’t really stop to think that eyes and PH could be connected, but my doctor said these things and worsening in vision can be associated with the heart and pulmonary vascular system. My script changed almost by 2 points from my last glasses to the one I just got renewed last year. I am thinking that the script this year may need some changes too based off how I’ve been seeing lately.

      How often do you go to the eye doctor? Do they notice eye changes that may be related to worsening pulmonary or cardiac conditions? Do they ever make that connection with your eyesight and PH or underlying conditions? Share here.

    • #24062
      Jimi Mcintosh
      Participant

      Eyesight has gone from 20/20 with glasses to 20/500 right eye due to hole in macular. Cataract has formed in right eye, list 60% of central vision and most
      People’s face are see as a “black” hole.

      1 year after stopping tyvaso and adcirca my vision started to change, developed cataract in left eye, removed by laser and vision improved to 20/20 with progressive tri-vision lenses. Developed an occasional discharge, dry eyes, and weeping in left eye from meds and CPAP.

      Surgery scheduled for 2/26/20, cancelled, cannot lay flat and breathe, primary felt risk too high, need to stabilize weight, fluid balance and meds. Now Coronavirus and the 6 month window for 70% success rate is closing. Hoping to still qualify for surgery by June

    • #24065
      Alfred Gronroos
      Participant

      Hi, EYES – three sets of glasses in two years and i still do not see like I want to. Tv is blurry, my hearing is bad so closed caption is not good for me. I can’t read fast enough. I have had cataract surgery, YAK laser surgery, they claim dry eyes, the cpap/bipap do not help with the dryness. I use drops but not sure if they help. oh, I got glasses in the third grade so I have had many happy pairs thru out the years. These great golden years… Al

    • #24074
      Jen Cueva
      Moderator

      I do see my eye doctor every year at a minimum. I have a horrible time with dry eyes. Like @alfredjohn, I have prescription eye drops that I use several times per day. I think that helps a for a tad. But, I was told that the oxygen levels, as well as blood flow to my eyes, is not the greatest. I am also on Revatio(sildenafil) and have been for 15 years. That affects my vision as far as blurriness and impacts my eyesight, sadly. Thankfully, they only noticed this within the last 5 years.

      For me, going at least once a year, some times, more often is the plan. I also find it important to stay with the same eye doctor if possible. This way, they know the changes from one visit to the next.

    • #24085
      Brittany Foster
      Keymaster

      @jimi wow, it seems like you have so much going on with your eyes! I am sorry that you had to have that delayed. The delays in care and holding period for testing right now is really so unfortunate for those of us with chronic conditions that need it for diagnostic or management purposes. I hope that you are able to get that rescheduled sooner rather than later! I hope you’re able to still qualify for the surgery that you need. I’m praying for that for you.

    • #24086
      Brittany Foster
      Keymaster

      @alfredjohn these certainly are the “Golden years” of life right now hahahaha! I can sense your sarcasm and I like it 🙂 I am always sarcastic too, it helps to deflect the bad LOL I need to laugh at myself most of the time or I’d be crying. You definitely have been through your share of eye troubles and the amount of glasses that you have had through the years is probably enough to put glasses on an entire school full of kids!

    • #24089
      Brittany Foster
      Keymaster

      @jenc absolutely ! This is so important about making sure you have the same eye doctor. My eye doctor even asked ME before I got to telling him about changes in my heart recently when he did the eye exam. I was impressed and also liked to learn about the connection between the two. It was just amazing to me that he noticed these things. I actually have macular degeneration in one of my eyes and it is significantly worse than my left and also a bit of a lazy eye when I stare directly at something or have to do the “follow the finger” neuro test in the doctor’s offices.

    • #24093
      Jimi Mcintosh
      Participant

      Just Received the following info from
      The FDA , this medicine was discussed months ago, there are strong indicators that it may cause cancer and other stomach issues.any of us take this medicine and related ones due to the amounts of prescribed and over counter drugs.

      ISSUE: The FDA announced it is requesting manufacturers to withdraw all prescription and over-the-counter (OTC) ranitidine drugs from the market immediately.

    • #24101
      Colleen Steele
      Keymaster

      @jimi I didn’t realize this mandatory withdraw of ranitidine is still happening. My son has been on it for 10+ years now. He stopped it for a while due to this concern but his acid reflux returned and it was getting bad. His doctor said there was some confusion about the ranitine and that not all of it was bad, just certain brands…sorry I don’t know what that are. He filled a new prescription for it and the pharmacy has been sending it. Guess we’ll have to revisit the concern with his doctor. Thank you for sharing.

    • #24103
      Jimi Mcintosh
      Participant

      The immediate recall was issued around6:pm EST Today and was headlined
      On ABC , it listed the brands, advised users to stop taking and destroy. For further info go to:FDA.GOV

    • #24108
      Brittany Foster
      Keymaster

      @jimi thank you for sharing this information because I know there are a few people on the forums who are taking this for reflux, like Colleen’s son and myself. Colleen, my doctor also said that it wasn’t an issue with the type that I was taking. Not sure if that has changed at all though to cover all types now. My cardiologist actually called me when all of this was first announced and wanted me to switch to prilosec which I think is very similar, if not the same just different names !

    • #24114
      Jen Cueva
      Moderator

      @brittany-foster, it is crazy whet the eye doctors can see and tell you by looking at your eyes. I am sorry about the macular degeneration. It certainly is most likely related to your other vascular issues. I am so sorry for the amount of stuff you are dealing with. I know this affects you mentally, too.

      Too funny Brittany and @alfredjohn, indeed the “golden years.” I am with Brittany, laughing is better than crying. Although, there are times that happens, too.

    • #24115
      Jen Cueva
      Moderator

      @jimi, I hope and pray that you can have your survey once this is all over.

      Thanks for sharing that information, I did see that on the news last night. I am not on it, but my hubby was. I stopped it immediately.


      @brittany-foster
      , Prilosec is a different type of drug in that category. I am glad that your doctor switched you. Ranitidine is Zantac. Both are effective in blocking the production of stomach [email protected], indeed a good idea to double-check with your son’s doctor again. I had also heard at first; it was only certain ones. But better safe than sorry, right? Keep us updated, please.

    • #24132
      Brittany Foster
      Keymaster

      @jenc it’s scary when medications get recalled, especially for those that may have been on the medication for an extended period of time. I have been on and off zantac for YEARS since I was about 12 years old and they first diagnosed me with acid reflux. I’m sure I am not alone in being impacted by this recall, I just hope that it doesn’t cause any issues down the line and hope that it didn’t make anything worse.

    • #24148
      Valerie
      Participant

      So true, and it’s so sadly.
      My eyesight was fine, but it started to deteriorate a few years ago. I usually attributed this to the fact that I read a lot and spend a lot of time at the computer.
      To get the medicine, I had to pass a medical Commission every year, where there was also an ophthalmologist. Usually it was an unfriendly and indifferent oculist in a state clinic who silently dripped something into my eyes, silently wrote it down and practically said “get out of here to the next doctor”. Two or three times I went to a paid doctor on my own initiative and he was more attentive. The survey was conducted in more detail. As a result, he would find out about my heart and lung problems and say, ” Well, this is it. Yes, you have problems with blood vessels in your eyes, but it’s because of your heart and lungs”. I asked if there was anything I could do about it, but he just shrugged (like, “there’s nothing you can do about the heart, so it’s irrevocable with the eyes, too”). So I didn’t get any help from these visits, other than learning about the connection of the heart vessels with vision.
      I clearly have myopia, because I watch TV closer every year. I can see well up close, but I can’t see far. I don’t have glasses, because according to the unspoken opinion of oculists, they are meaningless (and we will all die, lol). There is an anecdote “People ask me how good my vision is without glasses. Well… What can I tell you, mysterious talking spots?”
      One of the paid ophthalmologists gave me a leaflet with eye exercises, but I don’t have the patience to sit down and do it.

    • #24158
      Jen Cueva
      Moderator

      @brittany, yes, this can be scary to learn that medications that we are using or have used are recalled. Like you mention, who knows what effects they may find down the road. Hopefully, nothing pops up related to this recall.

    • #24167
      Brittany Foster
      Keymaster

      @valeriekv taking care of our health really can be so time consuming ! I’m sorry that you are also going through this eye trouble. Your doctor is right that there is that connection with the eyes, blood vessels, and the heart. It’s unfortunate when something can’t be done about something that seems to be making everything else worse. For me, my health is basically a lot of symptom management vs actual treatment or fixes for things. So each part of my body, including my vision is being watched over and taken care of by specialists. I am grateful to have the specialists that I do. I can see how doing an eye test or training your eyes would just be another thing to add to the lost list of what you need to do to try to help yourself! I wish it was easier for you.

    • #24193
      Valerie
      Participant

      Brittany,
      I’m very happy to hear that you have such a diverse and supportive team of doctors. Many people here on the forum (Yes, probably almost all of them) would not be able to live normally (or almost normally) if they were born a hundred years earlier. Therefore, I am happy that we all live now, when there are so many medicines and there are so many scientific achievements. You are lucky to have such a medical team, and we all here on the forum recognized you. This is great! It’s a good thing you have an optometrist watching you. Does he often conduct any research or tests? I do not like the mandatory part of the researches, when I get drops in my eyes that dilate the pupil. I understand that it’s easier for the doctor to see my fundus, but then I look like a drug addict with these huge pupils, and for a whole day I have strange vision.
      Jen,
      I have also been on sildenafil for almost ten years (it used to be revatio, but now it is a Russian generic). Does it really affect your vision? I used to blame him for migraines and stomach problems (because I don’t take the whole pill and because of this, the tablet shell doesn’t protect my stomach). But it also affects vision? This is bad news.
      Have you really not been given any eye exercises? These are simple things, like “focus your vision on an outstretched finger, then focus your vision on a distant object” or “look down left – up left – up right – down right,” and so on. I know it has to be done, but I don’t have the patience. I know that working at a computer requires that a person should blink frequently, should be distracted every fifteen minutes and look out of the window. I often don’t have the time or patience to do this. In addition, sometimes it is hindered by thoughts that were not expressed by ophthalmologists (those thoughts where “all this is useless”). Then I think, “come on, this doesn’t make any sense”. Someone once even stuck to the monitor of my computer at home a leaflet with exercises for the eyes!

    • #24198
      Brittany Foster
      Keymaster

      @valeriekv I can understand how hard it must be to do additional exercises and activity for the eyes every day. I work at a computer all day mostly so it can be hard to look out into the world after staring at the computer screen for so long. Even when I look up after just an hour at the computer my vision seems to be worse and a lot more blurry. I am lucky that my doctors follow me as closely as they do. I think it’s important for all of them to work together sine so much of the body is connected !

    • #24200
      Jen Cueva
      Moderator

      Hi @valeriekv, I, too, am in front of the computer several hours per day. I do try to blink when I remember. As you mention, this can be difficult to remember when you are busy. I also know that not only my Revatio through the years, but just in general, the lack of blood flow affects the eyes. Taking several diuretics, do not help. This can make this even more difficult. I do use drops, again, when I think about it. Those are 2 times per day. I should put them on my desk so I remember to do them more often. I can use them every 6 hours as needed.

      You are only taking half a pill of Recatio, @valeriekv? For me, this continues to cause headaches, sadly, most PH meds do. This is due to the dilation of blood vessels. It is almost like we get too much blood flow. That is what it feels like, correct? Yes, it can affect our vision. It should be in the side effects section of the patient information leaflet. Of course, like all side effects, everyone is different.

    • #24209
      Valerie
      Participant

      Brittany, do you have the same blurring of distant objects as I do from focusing too long on near objects? In this situation, I say that “my eyes have become a bunch”. Computers have so many advantages, but they kill our eyes. Have you tried any eye exercises? Of all these exercises, I often remember “look at the extended finger, and then at something outside the window”. I do this exercise rarely, in the case when I looked at the monitor a lot at work, and my eyes are completely tired.
      Jen,
      do you use drops like “natural teardrop”? (I don’t know, maybe you have a different name for it, it’s a simple preparation for hydration of the cornea). Or are you using something else, more professional? Does it do you any good?
      I don’t take a whole revatio pill, but a little more than half of it. I am upset by the news that this also affects my vision. Of course, I’ve read the instructions for “revatio” and seen a long list of side effects, but I don’t always understand how it works. Are these dilated vessels in the eyeball? And it changes your vision?

    • #24213
      Jen Cueva
      Moderator

      Hi @valeriekv. I did use like natural tears but now use a prescription drop that my eye doctor gives me. Thankfully she offered me several trial bottles, they can be costly. The natural tears are helpful f you can use them 3-4 times per day. I know, something else to remember.

      Yes, sadly, most medications have a gazillion side effects. Thankfully, we usually do not experience all on their lists. For my eyes, it is the lack of blood flow that affects my vision. My eyes are blurrier, and I also have a sensitivity to lights. My vision has changed because of Revatio and, of course, the natural process of aging.

    • #24240
      Jennifer Beaty
      Participant

      I’ve noticed that some of my medications cause blurred vision. Unfortunately, there’s nothing I can do about that. I’ve asked my pulmonologist multiple times if I still need all the meds I take only to be told that I do. So, I just squint a lot which doesn’t help my wrinkles, LOL 🙂

    • #24243
      Jen Cueva
      Moderator

      Hi, @jennifer-beaty, that is certainly the hard part. We need the medications for PH, so it is often a Catch 22. Are you on Revatio, too, or still Adcirca? Often, stopping the meds would cause more issues than blurry vision. Is that what your doctor told you, or did he offer a different explanation?

      Too funny, I agree, squinting, like frowning does no justice to our wrinkles, Hehe

    • #24256
      Brittany Foster
      Keymaster

      @jennifer-beaty I am already using ROC (retinol correction) creams around my eyes for the puffiness, wrinkles, dark circles and fine lines. It has been part of my morning skin care and nighttime skin care routine for a few years now. I am not even 30 yet, but have formed some wrinkles over the last few years, especially from squinting and not having the best eye sight. I hope they can figure out a plan for the medications for you.

    • #24263
      Scott
      Participant

      I am an ophthalmologist and PAH caregiver.

      Changes in prescription are not caused by using your eyes. The link between reading and myopia (nearsightedness) progression has been talked about for decades but no study exists that proves there is a link. Likewise, medications would not cause this change except for the rare medication (not PH meds) that can change the lens inside the eye and its ability to change shape to “focus”. Increases in nearsightedness generally occur because of lengthening of the eye which is due to natural growth. Some older people will have a smaller increase during the initial stages of cataract formation.

      Sildenafil can have vision side-effects. The most worrisome is something that affects the optic nerve and is thought to occur due to decreased blood flow in people who have a very typical appearance optic nerve appearance on clinical exam. This has been reported in a single PH patient and most cases occur in people with other diseases which lead to decreased blood flow such as atherosclerotic heart disease. Men with ED often have these other risk factors which explains why this more serious side-effect is seen in this population.

    • #24266
      Colleen Steele
      Keymaster

      @scott thank you for that information and for sharing with us that you are an ophthalmologist. My son’s eyesight has gotten progressively worse since transplant but it hasn’t been linked to any medications. He does take Topamax (Topiramate) but so far hasn’t experienced the specific eye problems that it can cause. When he had PH he was taking Sildenafil but again…his vision changes were not linked to that. It’s just natural sight changes that he has been experiencing.

      Thank you for taking the time to explain some of this to us.

    • #24281
      Scott
      Participant

      Yes, Topamax can cause swelling of the ciliary body inside the eye and lead to an acute change in vision and more importantly angle closure glaucoma where the pressure inside the eye goes up very quickly. Fortunately this is not common but is also well known and can be correctly addressed if it were to occur.

    • #24290
      Brittany Foster
      Keymaster

      @scott wow! Thank you for sharing such valuable information with us. I know it is greatly appreciated. I honestly thought that there must have been some connection with straining my eyes, reading, looking at a computer screen etc that caused more stress on the eyes and therefore my eyesight. But, as my own eye doctor says, he thinks that it has a lot to do with my underlying heart conditions and when my heart has been worse or when I have been going through a lot with my circulation and bloodflow, me eyes are usually worse too. I wasn’t able to physically get to the eye doctor but I have a scheduled appt in the summertime when hopefully the worst of COVID19 is behind us.

    • #24291
      Brittany Foster
      Keymaster

      @scott I also experience changes in eye pressure and some broken blood vessels. My younger sister has signs of glaucoma and like I said before in a post, I have macular degeneration in my left eye. Something that they are looking out for.

    • #24302
      Jen Cueva
      Moderator

      Hi @scott, thanks for your excellent information here. We appreciate your education on these matters. Vision issues, I know, are age-related, too. But because I have taken sildenafil(Revatio) for over 15 years and at the highest dosage possible, my eye doctors did say that this was part of my vision issues. But, with me being “40ish”, age certainly plays a role as well.

      We are appreciative of such great information. I have an appointment scheduled next month, which looks like it may be changed.

      I hope that you and your family are staying safe during this pandemic.

    • #25490
      Tracey
      Participant

      Hi Everyone,

      I’m new here, and find this discussion absolutely fascinating. Approximately 5 years ago I went for an eye test and was told by the optometrist that I needed to see an Ophthalmologist, who diagnosed me with cataracts. I went on to have cataract removal surgery, but really have not been able to see any better since the surgery. I have been back to the Ophthalmologist a number of times and have spent a fortune on spectacles that have done nothing to help. I have eventually given up on trying to find an answer.

      I was only diagnosed with PAH 6 months ago, together with mitral valve stenosis, mitral valve regurgitation and right heart failure, was well as having systemic lupus (an autoimmune disease).

      In South Africa we have to undergo an eye test every 5 years to renew our drivers’ licence and I am now due to renew my licence again. I’m beginning to think that I never had cataracts and in fact my eye problems are being caused by my circulatory problems?

    • #25497
      Colleen Steele
      Keymaster

      @traceyaustralianmigration-co-zaey I don’t have an answer regarding the circulatory problems but hopefully one of our members can jump in with a response.

      I’m so sorry to hear that the cataract surgery did not help. In most cases that I have heard of, including my dad’s, it usually helps, so I wonder if something is triggering these eye issues in you. Do you see a PH specialist or talked to a doctor other than the Ophthalmologist about it?

    • #25499
      Jen Cueva
      Moderator

      Hi @traceyaustralianmigration-co-za, I am not sure if your circulatory caused your cataracts or not. It is often difficult to distinguish which came first. I am sorry to hear about your frustrations with your Ophthalmologist. I would see if you could get another opinion f you are not satisfied with the first one.

      You are newly diagnosed with PH. How long have you had lupus?

    • #25504
      Scott
      Participant

      Problems with circulation can cause certain issues with your eyes but this is often seen in people with significant carotid artery disease. Cataract surgery is generally very successful if the issue was the cataract alone. There are times that a cataract looks “mature” or “dense” enough to be causing the decrease in vision that is recorded but there ends up being something else that was equally limiting. This should be something that should be able to be diagnosed. Assuming all of the “focusing” issues are taken care of with a proper pair of glasses, there are other things that should be looked into as a cause. The most common is a problem with the retina. With modern day technology special pictures of the retina can be taken which basically show every single layer of the retina in fine detail. Any problems should be seen this way. Optic nerve problems can also cause poor vision and can usually be seen on exam or with testing. Occasionally other testing needs to be done such as looking at the “electrical current” of the retina. These tests are usually available at tertiary care clinics but are less likely to be the cause of the problem.

      • This reply was modified 6 months ago by Scott.
    • #25511
      Jen Cueva
      Moderator

      Thank you so much, @scott, for sharing your knowledge. I am sure that @traceyaustralianmigration-co-za will appreciate the feedback, too.

      I am interested in the depth that you shared because my hubby has cataracts. He is in his 40s and was borderline diabetic once. They want him to rush into surgery, but I was not sure they completed enough tests first. Are these tests something you would suggest before cataract surgery? No matter what eye doctor he visits, his glasses are not helping him. Thanks again.

    • #25521
      Colleen Steele
      Keymaster

      Thank you so much for the information @scott. Your knowledge as an ophthalmologist is greatly appreciated and I hope it helps @traceyaustralianmigration-co-za.

    • #25524
      Scott
      Participant

      @jenc the things that might limit visual recovery after cataract surgery are almost always able to be seen on a good exam by an ophthalmologist. It is not usually considered necessary to do these other tests if the clinical exam is otherwise normal and the “density” of the cataract appears to be consistent with the vision that is obtained.

    • #25529
      Jennifer Beaty
      Participant

      @jenc I currently take Adcirca and am on a Remodulin pump. But I take all of the heart medications. Most of them say may cause blurred vision. Some days my sight is fine. I do wear glasses. But many times I notice that by the end of the day things are starting to blur.

    • #25547
      Jen Cueva
      Moderator

      Thanks again, @scott, for sharing your knowledge. We all appreciate it much.


      @jenniferbeaty
      , so many medications can affect our vision. But as Scott mentions, so does our circulatory system. My vision also gets worse as it gets later. I contributed that to age. Maybe @scott can shed some light on this, too. I am only in my 40s, FYI, hehe.

    • #26154
      Linda L Jacobs
      Participant

      Thank you all, I am new to the Forum and this is fascinating.. I have been on 4 pills a day of 40mg Sildenafil. My eyes are terrible, I also have Cataracts, but my eye Doc says not to get surgery. and have to keep getting new RX’s for glasses, near-sight and far-sight.
      but the worst reaction i have had with the Sildenafil is that it makes the capillaries open so we can get more Oxygen, but the capillaries are what hold your hair in your scalp, my hair comes out by the ton, all of it with the bulb still on the end so I know it is not breaking off, but coming out of mu scalp, there is lots of regrowth. I am on so many meds for all my ailments , all of them so many side effects, i don’t want to complain. I am still kicking , thank you all

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