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    • #20122
      Kevin Smith
      Participant

      I guess I’m entering a new phase of the PH. The constantly tired phase. Sometimes the pointlessly exhausted phase. The why am I always pooped/dragging/beat/bushed phase. The I haven’t done a thing to tire me out but here I am tired again after sleeping till 11 phase.

      Do you all experience this, too?

      If so, any ideas why? Is it the drugs? (I take Selexipag and Tadalafil plus my few other meds.) Or is it the disease?

      Second question, anyone live near Rochester NY and use the PH accredited pulmonary practice at U of R / Strong Memorial Hospital? We are moving there next spring. Curiously, I was born in that hospital in 1960. Guess I’m going back to the same one for the conclusion of this farce, too!

      Kevin

    • #20372
      Colleen Steele
      Keymaster

      Hi Kevin, I’m sorry you are struggling so severely with fatigue. I don’t have experience with the two medications mentioned, Tiredness is unfortunately a symptom of PH, not to say that some treatments can’t enhance this problem.

      My son struggled with frequently feeling worn out and tired, which worsened when he went into heart failure. What has your doctor’s input about the exhaustion been?

      I read your other question about beraprost and I’m afraid I’m not familiar with that medication either. Wish I could be of more help. Hopefully another member has the experience you are looking for.

    • #20374
      Jen Cueva
      Participant

      Hi Kevin,
      I am sorry to hear about your ongoing struggle with exhaustion. I often have days like you mention. This past week or so we has been one of those “seasons”. Often I find this happens with added stress or I have overdone it. I know for me, it is most often a combo of the two. Then PH in general causes the fatigue.

      I also would mention this to your doctor as I have needed to increase and/ or add medications if this ends up being a progression in PH. Often, I find it is a “PH Crisis” for me. This is like a flare-up and often takes some time to get back to my “norm”.

      Sorry, I have never actually been to NY, I am not familiar with that hospital. I hope that others can help. It sounds like you have some packing to get done. Is this adding stress to your body that may be impacting your fatigue and increase in PH symptoms?

    • #20394
      Brittany Foster
      Keymaster

      Hi Kevin,
      Tiredness and fatigue is something that I struggle with a lot. Like Jen has said, mostly this is a sign for me and my body that I am just doing TOO much. I have to remind myself to slow down a lot even on days when I feel like doing a million things at once. If this is something that is continuing and starting to put a damper on your everyday life then it is worth mentioning to your doctor. Tiredness and fatigue can be caused by a LOT of things, not just PH related although having PH certainly doesn’t help with this symptom. It could be something that even a supplement might be able to help with or if you are deficient in a vitamin or low in your red blood cell count or something you may need some iron supplements too. Like I said, if it continues to be a problem for you I would check in with your medical team or even your primary care provider to see if they can run some labs to see if there’s a good answer for this. How has your sleeping been? Do you also have sleep apnea? I know that personally, when my apnea is acting up or when I have been slacking on my therapies like BIPAP use, I really feel the impact of it in my general tiredness. This symptom is SO LIMITING though and is one that I try to really pay attention to in order to help myself get back to my version of normal.

    • #20736
      Ally
      Participant

      I am on Uptravi and opsumit and I was doing great and then now I am beyond exhausted and my muscles ache. I know that’s a side effect and I tried to increase my dose to 600mcg twice daily Saturday and that’s when it started. I went back to 400 mcg twice daily but I still feel like crap.😢

      • #20739
        Brittany Foster
        Keymaster

        Hi Ally,
        I am sorry that you are experiencing those side effects. I know that can’t be pleasant for you. Especially if it has to do with the medication increase. It might take a little bit for your body to get adjusted again to that lower dosage after experiencing symptoms from the higher dose. I hope you get some regulation soon!

      • #20796
        Jen Cueva
        Participant

        Ally, I am so sorry to hear about your issue with increasing the Uptravi. I am also on Uptravi. As Brittany mentions, it often takes our bodies longer to catch up and time to adjust to this medication. I know for myself, I did have to stop during increases. I also had medications on hand to help with the increase in leg pains. If this pain gets too bad, certainly contact your PH team to see if you need additional pain meds to help some. Otherwise, it is just our bodies way of adjusting and takes time.

        It certainly can be frustrating when it seems our bodies are not cooperating. You are not alone and I hope that the side effects will ease up some for you soon. I know when I was increasing, I was not able to accomplish much. It seemed that some weeks just the medication took over my body. After waiting and allowing my body more time, it helped.

      • #21287
        Ally
        Participant

        Hey guys I have great news !! I had a very bad day yesterday with Uptravi but a friend of mine cane over. He recently started farming ginseng he gave me a root and used my blender to grind it up. Well I called CVS pharmacy and they told me it was safe. Omg it has changed my life my nausea is gone I can breathe better and I just had to share!!

        • #21294
          Brittany Foster
          Keymaster

          Ally,
          This really is great news
          I’m so glad that you found something that works and helps you naturally with some of the symptoms
          Does it have a taste to it? What else do you blend in there with it? Thanks for the tips!

        • #21306
          Jen Cueva
          Participant

          Awesome news, Ally! I am so happy that you found something to help with the side effects of Uptravi. I have used ginger and ginseng tea for nausea. Thanks for sharing your tip with using the root. I am so happy to hear this helps you and may even help many of us, too.

          I hope this good news will continue for you.

        • #21312
          Colleen Steele
          Keymaster

          Ally,
          I would love to hear more about how you prepare the ginseng. I didn’t know it can help with nausea. I’m so glad you have found something that works for you. What does it taste like?

        • #21321
          Brittany Foster
          Keymaster

          I’m curious about what it tastes like too. I really like the taste of ginger that I get for my sushi at sushi restaurants. I just would have no clue where to begin to prepare that myself LOL ! But ginger actually does help a lot too. Especially ginger chews that you can get from whole foods stores.

        • #21335
          Colleen Steele
          Keymaster

          As a child my mom would encourage me to drink ginger-ale when I was sick. I do remember it settling the stomach not to mention it’s coolness on a sore throat. Now that I’m older I find that ginger-ale gives me reflux for some reason as do ginger snaps, which happen to be one of my favorite cookies. In moderation it’s not too bad but if I drink or eat too much of it I’m sick all night with reflux.

        • #21347
          Jen Cueva
          Participant

          Brittany and Colleen,
          I like those ginger chews, too. They are so soothing. I also keep Ginger-ale pretty much all the time in my pantry and fridge. I have nausea often with my kidney disease and also with my Meds. These, as well as the honey ginger tea help some. Otherwise, I have two different nausea meds.

          Colleen, that is interesting that you mention it gives you acid. I love those thin ginger snaps, I forgot the brand, but they can be addicting.Hehe

          But, I have found that as I am getting older, certain foods are not tolerated as well they once were.

    • #20408
      Kevin Smith
      Participant

      Metformin is the culprit. Specifically, it is no longer regulating my glucose, it is causing palpitations and irregular & skipped beats, it is causing awful nasal congestion and interrupting my sleep. It is ALSO MAKING ME TIRED! I experimented recently by stopping it for 5 days. I had more stamina (helped my much younger wife stack firewood), slept almost through the night and had almost no congestion. I thought it was Tadalafil (notorious for congestion as all ED meds are) but it isn’t. So I will try diet and exercise for now as when I was off Metformin and eating carefully plus walking my glucose was much lower (I check it several times a day). In retrospect Metformin has been doing all these bad things for a year now; probably doesn’t get along with Selexipag… If I can’t ultimately control the glucose naturally I will request a substitute for Metformin as there are many. Happy I found a reason for the annoying side effects because I had, out of desperation, begun oxymetazoline spray (minimal dosing) at night so I could breathe nasally and actually sleep. (I can’t breathe through my mouth at night unless drunk or anesthetized.) Besides, without Metformin now I can enjoy my occasional Jim Beam or Schlitz.

      • #20741
        Brittany Foster
        Keymaster

        Hi Kevin,
        how have your side effects been recently? Did you talk with your medical team about the possible medications being changed or adjusted so that you could hopefully get some relief? Thinking of you and hoping that you were able to advocate for yourself so you could stop having those symptoms or at least start feeling more like your version of normal!

    • #20743
      Ally
      Participant

      Thanks Brittany for the advice because I was very pleased with my progress on Uptravi until last Saturday. I may wait another week before i try to go up again I am a little gun shy now 😊

      • #20748
        Brittany Foster
        Keymaster

        Ally,
        I know the struggle of dealing with setbacks from medications. It is hard to want to give it another try but as your body adjusts I’m sure it will start to get back to a happy medium and you will start to see the side effects get more tolerable and eventually less and less. Definitely bring it up to your medical team about having to titrate back if you haven’t already discussed it with them. I’m sure they want to hear about your progress and how you are doing.

    • #20750
      Ally
      Participant

      Thanks Brittany your always so positive and supportive and I truly appreciate it. I get discouraged when I get better then get worse it’s my personality I guess but I won’t give up. Thanks again

      • #20752
        Brittany Foster
        Keymaster

        I totally feel you on getting discouraged because of that. I have recently had a lot of ups and downs myself and the “downs” always feel so much worse after a period of doing well! It gets frustrating and I usually get so angry with myself even though I know my body is doing the best it can for what it’s working with. I always have to believe the saying, “trust the timing of your life”. It has gotten me through so much and always helped to ground me into a better mindset when serious setbacks arise. I do have my moments of serious frustration though filled with anxiety, depression, and all the feels there are to feel!

    • #20757
      Jimi Mcintosh
      Participant

      Tiredness, fatigue, being lethargic, never having enough energy to finish
      A task is the new norm. Good days, bad days, all run together, easy to get confused over what the norm really is.

      Constantly looking for a miracle cure, a new pill, set-backs, never enough sleep. I buy liquid iron by the quart and take it like my PAH meds, take my vitals and log them religiously. Waiting on the next episode. I push forward, because, I am not a quitter, lot of people are dependent upon me. I make time for myself everyday, if only 10 minutes.
      Tomorrow is a new day, with new trials and tribulations, what was once my life will never return, the new me will weather this storm too.

      • #20761
        Brittany Foster
        Keymaster

        Jimi,
        I can appreciate you determination and your “push” to keep going even though you know you are going to be faced with difficulty, fatigue, pain, etc. It is a different kind of strength that those of us with chronic illness have to wake up and face the same things that tried to knock us down the day before. But we KEEP doing it which is the best part of it all. I have learned to have a lot of tenacity and I get a lot of that quality FROM chronic illness and it’s something that I’m proud of. It is a hard balance though for sure especially with just managing the many symptoms while still trying to make time for yourself.

      • #20798
        Jen Cueva
        Participant

        Kevin, I am glad to hear that you found out the culprit. Metformin was not a good choice when my husband was on it. We found that he does better with diet and he can exercise to control his blood sugar.

        As far as feeling so bad, I hate that for you. I hope that you can speak to your doctors and come p with a plan. I know that they have other options if your blood sugar is not controlled.

        It is certainly difficult trying to manage multiple chronic illnesses. I can relate to that. I love your determination and fight but also do not want you to have other issues that may affect your PH. I hope that you can get relief and your doctors will. Be updated. Keep us posted.

    • #20804
      Ally
      Participant

      Yes thanks Jen for the encouragement and I will definitely keep on with the Uptravi because it was working at one time so it can again !

    • #21316
      Rebecca Talkie
      Participant

      Increased fatigue is what caused me to start down the road towards diagnosis of my PH. I noticed a huge drop off in my energy level last January. I thought I had a post holiday depression and my Dr. changed up those meds. My mood improved but the energy level did not. He instructed me to find a new Pulmonologist, as mine had passed away of a brain tumor. The new Pulmonary Dr was who ordered the CT scan that found the enlarged pulmonary artery. So…10 months later, I have a diagnosis, a new medication and am still tired. I admire all of you who are persevering through this who still have jobs and very busy lives. I have been retired for several years.

      • #21317
        Brittany Foster
        Keymaster

        That was also one of my symptoms with the PH was an increase in fatigue and how badly I was feeling. I thought at first that it was just me being overly anxious and depressed but it was a lot more than that . After the right heart cath it really helped me to reach some type of diagnosis and I ended up getting a treatment plan shortly after that. How long did it take for you to get a treatment plan?

      • #21349
        Jen Cueva
        Participant

        Hi Rebecca,
        Fatigue and exhaustion were my first symptoms, then the shortness of breath came. I, like yourself, thought it was from the holidays. I thought that I overdid it and ate too much. I was thinking I was out of shape and maybe just the business of the holidays got to me.

        I hope that your new meds will help some. I know with me, fatigue is an ongoing problem. I require much more, “beauty rest” than ever. Hehe

        But, I have found that listening to my body and doing better with taking breaks is beneficial.

    • #21344
      Jimi Mcintosh
      Participant

      Colleen , ginger ale is my stomach go to medicine for stomach upset, gas, sour taste and upper GI esophogal issues.
      I drink it warm and as fast as I can swallow it. Being using it for over 25 years. Now that an association to most anti-acids, and possible cancer or lower GI issues, I am stocking up on this and backing soda to free up my digestive system and allow more breathing room for my PH scarred lungs

      • #21370
        Brittany Foster
        Keymaster

        Jimi,
        I’m so sorry you are dealing with the GI issues too. I know how hard it is to have reflux, stomach upset, vomiting, pains, all on top of trying to battle with lung conditions. It’s not easy! It’s actually currently my hardest two conditions to balance.

    • #21345
      Jimi Mcintosh
      Participant

      Anyone considering adding raw ginger to your diet be aware that it can cause issues with some blood thinners. I carry the ginger chews for stomach upset. I consume a cup of ginger tea after 2-4 hours of taking my prescribed meds. I purchase raw ginger and the chews at the “Asian” markets, usually at $2.00/lb or less. I planted some in my flower garden, along with fresh mint. Ginger is a tuber and can take over the bed. The ginger helps with fatigue and exhaustion, and the fresh mint tea eases my PSTD and allows me to get 4 hours sleep

      • #21350
        Jen Cueva
        Participant

        Thanks, Jimi,
        Great tips and reminders for those on blood thinners.

        I also enjoy the mint teas. I am sipping one now as I type. It is a honey lemon tea. I have been drinking hot teas these last few days. I feel like I m trying to avoid bronchitis and such. This crazy weather is not helping with that, much.

        Great point, too, a little ginger goes a long way. I have done that before, too. Hehe

        • #21371
          Brittany Foster
          Keymaster

          Jen,
          I hope you can avoid that bronchitis ! upper respiratory infections are NOT fun at all. They always leave me in bed for a few days and I feel like I can’t do much about it but let it run its course. Keep drinking those different teas! The peppermint tea sounds great . Sometimes peppermint can increase me reflux though so I have been trying to avoid that flavor. But the lemon one sounds fabulous!

    • #21362
      Colleen Steele
      Keymaster

      @jimi that is important information that you shared about the blood thinners! Thank you!

    • #22797
      Sheriden
      Participant

      I am tired seemingly all the time since my “severe PH” diagnosis, and to a lesser extent for years earlier. My heart rate is in the fat burn zone for up to 23 hrs a day and I have very little appetite and my taste for food has greatly diminished. I have not had enough energy to cook and have been limited with my food choices due to food sensitivities and reactions. Needless to say, I am malnourished and weigh 95 lbs on a 5′ 7.5″ frame. Sooo, most of my day is spent trying to get myself to eat more. I have found more foods to help with this a month ago and it has helped tremendously.

      The only med I am on is to nebulize Xopenex at least once a day (they want me to do it twice), along with using a flutter valve and then nebulizing sodium chloride. I was switched to the child’s dose of Xopenex due to my having too many side effects from albuterol.

      My doc think my fatigue is due to malnutrition, yet that does not explain the constant high heart rate.

      My PH diagnosis is currently idiopathic with the probable cause to be bronchectasis (what the med treatment is for).

      My sleep test revealed sufficient O2 while I sleep and, while I sleep strange times during the day, I do feel I sleep well.

      Anyone else with PH have high heart rates and serious fatigue?

    • #22803
      Jimi Mcintosh
      Participant

      Tiredness, fatigue is the new normal. B-12, D-3, along with iron pills offer some relief. I suffer from
      Severe anemia, and transfusions are not helping.

    • #22809
      Brittany Foster
      Keymaster

      @sheridend wow it really sounds like you are going through so much with your PH and your energy levels. I can tell you that I really struggle with fatigue a lot and my heart rate increases at a pretty fast rate when I am exerting myself which just worsens the shortness of breath with activity. I feel like it is common for many to have shortness of breath and fatigue especially if the oxygen levels are dropping because the body is just not getting the proper energy out to the cells that the body needs in order to function. Something that my PH doctor recommended to help with fatigue is a medication called Pyridostigmine. Maybe it is something that you could chat with your doctors about trying to help with some of the fatigue symptoms? It sounds like you are pretty underweight and malnourished too. Have they discussed the possibility of a feeding tube? I am also underweight and have been given a feeding tube due to digestive slowness and problems with my esophogus post open heart surgery this past year. As much as it is a pain, it is also the way that I am staying alive and as well as I can be.

    • #22827
      Sheriden
      Participant

      Thank you, Brittany. Many blessings to you on your healing journey…

      I would very much like to know what they did in your open heart surgery, if you are willing to share.
      Could be privately, if you do not want it in this forum.

      Interestingly, my pulmonologist did not even refer me to a nutritionist. My primary did after I had already seen my pulmonologist twice. I only just started seeing docs in my current city for my conditions mid-November, after being diagnosed in another city 5 yrs ago. No one has mentioned a feeding tube thus far. I think the great news is I have stablized my weight for a month now. I do feel like I am force-feeding myself many days and some I just give up and do not eat enough. All things considered, I am still stable. Yay! As long as I do not have any pain or fever episodes, I imagine I can continue to do so.

      My pulse-ox readings have always been 92 and higher for the past 2 months, so the fatigue does not seem to come from that. I can only chalk it up to PH for now.

      I am wondering if the others can chime in on what they have learned causes their fatigue. My diagnosis is regular PH and not PAH.

      I am also wondering why the use of @ before a person’s name?

      • This reply was modified 2 weeks, 2 days ago by Sheriden.
    • #22832
      Sheriden
      Participant

      Kevin, were you diagnosed with PAH or PH?
      I am wondering if the drugs you mentioned were prescribed for PH vs. PAH.
      I want to start a list of drugs prescribed for PH (I was not diagnosed with PAH), so I can research them and be prepared after they do the heart cath.
      Blessings on your healing journey…
      Thank you!

    • #22849
      Rebecca Talkie
      Participant

      Here I am only 3 – 4 months into this diagnosis and I am still tired. I am only on Cardizem because I am Vasoreactive. My blood pressure is great but I am so fatigued. I am sitting here typing this contemplating a nap at this very moment. Trying to get the last of my Christmas decorations down. ( OK, yes, I overdo it, but it is one of the things I want my Grandbabies to remember about me.) There have been days that all I do is sleep, watch a little TV, play on my iPad and eat. What a bore! I am doing a reevaluation in the next two weeks – an Echo and some labs and another appointment with Dr. Jose. Hopefully, get an answer as to why I am such a slug.

      As an aside – would someone start a thread on weight. I see some people that look very thin and hear about some having feeding tubes. Then here I am, still a hefty Viking woman. I am confused as to if this disease causes weight loss, appetite changes, problems eating. Thanks.

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