This topic contains 18 replies, has 7 voices, and was last updated by  Charlene Marshall 1 month, 3 weeks ago.

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  • #18744
     Charlene Marshall 
    Keymaster

    You may have noticed that I’ve not been as active on the forums over the last couple of days. Jokingly, I like to tell people I am “MIA” (missing in action) when I am distracted or offline due to other commitments. Unfortunately, that isn’t the reason I’ve been a little less active on the forums in the last few days.

    Have any of you ever had episodes of sporadic dizziness since your IPF/PF diagnosis?

    I know dizziness and being light-headed is a very common symptom of being under-oxygenated, so I took some steps to address this as soon as I started experiencing it. I am intentionally drinking more water, as I have struggled with staying hydrated before. I’m also making sure I am eating enough, and am constantly monitoring my 02 saturation’s as well. Normally I don’t keep a really close eye on my oxygen, and I don’t always wear my supplemental 02, but I’ve had it on religiously the last couple of days, not just at night time. Typically my sats are between 89-94% dependent on exertion, so I believe I am being sufficiently oxygenated. These numbers don’t really differ from my norm when I have my supplemental oxygen on, depending on the LPM of course…

    Can you think of any other causes/reasons for episodic dizziness? 

    Last week I had a really busy week, and unfortunately compromised the amount I slept each night. I’ve been thinking maybe that is just catching up with me? However, I intentionally spent time sleeping this weekend and trying to catch up but unfortunately the episodes of dizziness didn’t go away. It isn’t all the time, thank goodness but seems to happen at random.

    Another cause of dizziness that can be associated with PF/IPF is standing up too quickly. I am intentionally trying to avoid this as well, and have since realized that the actions of standing up aren’t directly linked to my dizziness. I am feeling both frustrated and confused, as I thankfully don’t have any symptoms of a cold/bacterial infection either.

    Have you experienced this since your diagnosis? Were you able to identify the cause? If so, please share with me!

    Charlene.

  • #18768
     Laura Bush 
    Participant

    Hi Charlene!  I don’t know if this is just a coincidence or some divine intervention but when I saw this topic my jaw dropped.  The last two days I have been dizzy, wobbly and even fell forward today when I tried to stand up. I wasn’t sure if it was because of the severe sinus headache I have or due to the fibrosis or dehydration or ??? Perhaps it’s a combination or all of the above. I don’t know what to think. I had to cancel an appointment and plans I had with my daughter and grandsons, so I’m upset and sad that my health is controlling my life. I’m praying that tomorrow is a better day!😊🤞🙏

    • #18789
       Steve Dragoo 
      Participant

      @charlene-marshall

      Hi Charlene,

      I have had only two very short instances of dizziness and they were probably related to stress (far too much of that lately) and standing up too fast after laying on the sofa a couple of hours working on the laptop. Can’t wait to see what happens on my 24-hour trip next month. My BP is almost always optimal for someone half my age but I expect that to start changing with more pulmonary hypertension.

      Today at the gym I took in the O2 meter and when my heart was slow, my O2 was low – 89 – 93, when HB was fast O2 was 96 – 98. I think that is related to hypertension many of us get.

      H2O is a conductor of so many good things our body needs, so strive for at least 3 liters per day.

      Stay well friend… Steve

      • #18794
         Charlene Marshall 
        Keymaster

        Hi Steve,

        Thanks for writing, as always it is great to hear from you!

        Thankfully, these episodes of dizziness for me have been very short as well. I kind of expect the episodes to happen when/if I get up too fast, but typically they aren’t associated with that movement either. The episodes definitely could be connected to stress, I hope the days have been a little easier for you my friend. Stress certainly impacts our bodies in unusual/sometimes unknown ways!

        Makes sense re: the vitals being connected and the causes of hypertension. I also have been diagnosed with PH, given the compensation my heart is doing for my lungs. Good reminder to drink lots of water – I’ve been trying to do that over the last few days, and notice the episodes seem to be a little less frequent thank goodness.

        Talk to you soon and hoping things are going relatively well…

        Charlene.

    • #18793
       Charlene Marshall 
      Keymaster

      Hi Laura,

      Thanks so much for writing and contributing your thoughts to this topic thread, although so sorry to hear you’re also dealing with this unpleasant side effect. Thankfully it isn’t consistent, otherwise I’d be seeking out medical advice, but happens enough that it is impacting my day. Do you think the weather might be effecting your headaches/sinus troubles, in turn making you feel dizzy? It has been very rainy and gloomy here lately and I know many of my colleagues are having a hard time with headaches too. It might also be dehydration, as Steve alluded to below, hydration is so important –  make sure you’re drinking lots of water 🙂

      It is so frustrating when our disease dictates our plans, that is one of the worst things about IPF in my opinion! I hope in the last few days since writing, you’re feeling a bit better.

      Warm regards,
      Charlene.

       

       

       

      • #18797
         Steve Dragoo 
        Participant

        @charlene-marshall

        Hi – Yes – stress and because our bodies are generally weaker and harder to recover, stress affects us differently than someone without IPF.

        When writing earlier, I was trying to think of other possibilities for you and one may be hypoglycemia.  Even though I am diabetic, fasting has never caused it but years ago I was on insulin (not now though – YEA!) and I did have hypo-G a couple of times and dizzy. Anemia may cause that and I don’t know if we are more susceptible to low iron or not.  Have you tried a good B complex? Vertigo is another possibility and your eyes may need to be checked, too.

        Stay well friend. – Steve

      • #18808
         Charlene Marshall 
        Keymaster

        Hi Steve,

        Agree with everything you mentioned, thanks for sending more ideas my way about what might be causing the dizziness. I am doing a bit of intermittent fasting, not in an effort for weight loss but to help identify some foods my stomach may no longer be tolerating so maybe I’m not eating enough? I did go through with my colleagues what I consume (typically speaking) in the 8 hours I do eat, and then fast for 16 but majority of those hours I am sleeping. This could be part of the problem, I suppose. I do take an iron supplement as I am prone to being anemic too. My Mom suggested this as well when she was harping on me to get my blood pressure checked, although I am still on the supplement so I can’t imagine it is that. We’ll see.

        I just had my eyes thoroughly examined/checked not too long ago when I was adjusting everything, including my glasses, following the concussion so I don’t think it’s  that. Could be vertigo though, something to look into for sure. Thanks for thinking more of solutions, I am happy to report the episodes have been minimal today. Fingers crossed it’s going away now that I brought it up into conversation… that’s how it always seems to go! 🙂

        We’ll chat again soon, and I’ll keep you posted if I find anything out. Hopefully the episodes will continue to decrease until they go away entirely. Keep moving forward my friend, just a few weeks left until you’re back with your wife!

        Take care,
        Charlene.

  • #18780
     Kathy Medina 
    Participant

    Hi Charlene

    I was surprised to see this.  I experience dizziness myself.  I have been so dizzy everytime I stood up that I honestly lost all touch with reality.  I was very afraid that I may pass out.  I have been to my doctor who referred me to a ENT and when all was good there he referred me to a balance test then when all was well there I was referred to a Neurologist.  The only thing the Neurologist came up with is it must be my blood pressure.  They took me off of my high blood pressure medicine.  It has not cured the dizziness but it did help.  I would love to know if anyone else is experiencing dizziness and what the cure is.  I hope it is not directly linked to IPF because it sounds as though it may be here to stay.

    Kathy Medina

    • #18795
       Charlene Marshall 
      Keymaster

      Hi Kathy,

      I’m so sorry you can relate to me on this topic; episodic dizziness is terrible! I haven’t been able to link my episodes with standing/sitting too quickly. My Mom is also worried about my blood pressure and is encouraging me to go get it checked, but typically I’m pretty on parr with what I should be for someone my age. I can’t imagine that its my blood pressure causing this, but who knows. Really glad that coming off the medications did help a little bit! Do you think it might be hydration, Kathy? Staying hydrated is so important and potentially an easy fix. If it doesn’t go away for me, I may also have my oxygen needs re-evaluated as my requirements might need to be upped a bit. We’ll see…. so far it does seem better too, fingers crossed it continues to improve.

      Charlene.

    • #18812
       Steve Dragoo 
      Participant

      @charlene-marshall

      Hi Charlene – thanks for sharing because this helps us all.  I would like to suggest a top B complex (I think you said you do??) – if you are taking niacin be alert to how much the B complex may have in it, serrapeptase, nattokinase, and I know you will see some energy differences.

      Strangely after I go to the gym I need a little recovery time but then I have more energy than before for a day or so.

      No problem counting the days until lift off…

      Enjoy your Sunday of R&R. – Stever

      • #18820
         Charlene Marshall 
        Keymaster

        Good morning my friend @steve-dragoo!

        Well, the sun is finally shining here after several days of rain, so that always renews me and gives me more energy. I also just poured a fresh coffee, so it has been a good start to my Sunday so far. I hope to enjoy some R&R today, as yesterday was quite busy and then I’m looking forward to going for sushi with some friends for dinner. Do you like sushi? I love it – of course, the quality here doesn’t compare to anywhere on the coast!

        I take a B50 Vitamin, does this count as what you’re referring to? I think if the episodes aren’t completely gone by midweek this week, I’ll get in to see my doctor, although I am really glad they are subsiding.

        Hope you’re enjoying your Sunday, don’t work too hard preparing to head home! 🙂
        Charlene.

  • #18790
     Raymond C. King 
    Participant

    Hi Kathy Medina, Laura, and Charlene,

    I have noticed that Charlene hasn’t been posting as much as she had been so I figured she had to slack off for some reason. I know she is always under a lot of stress though and has to get away from it a little.

    I experienced the dizziness that you all have mentioned. I had thought that it was due to dehydration because I can’t drink much water due to me having a frozen stomach. I have started taking a lot of extra water thru my feeding tube though and that didn’t seem to help.

    My doctor thought it might be a blood pressure problem. Quite some time ago my Cardiologist noted my BP was a little high at one of my visits and put me on blood pressure medicine. It did seem to work on the BP but after a few months of taking the meds, I started to have dizzy spells and occasionally I even started to fall occasionally. The Cardiologist finally did reduce the dose of the BP medication but even after reducing it to almost nothing, I ended up passing out one day and hit my head on the bathroom sink. That caused a gash in my skull. I went to my family doctor and he told me to stop taking it altogether. He said the result of falling could cause me more damage than what the BP medication was helping me with. That did stop my fainting spells.

    That was a few years ago but now I have started having dizzy spells again and my doctor has attributed it to everything from not eating enough, getting up too fast, to not getting enough sleep. I have a blood pressure machine and when I get the dizzy spells my BP is normal, and my 02 level is up OK, I try to eat more than I feel comfortable to hold, and I sleep 6-8 hours at night. I’m not under any real stress so I have no idea what could be causing it. I guess all I can attribute it to is IPF progressing. My doctors haven’t been able to guess what causes it either so I guess I’ll just have to live with it.

    If anyone comes up with what helps their dizziness, I’ll probably give that a try!

    Ray King

    • #18796
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Thanks so much for your comments on this topic – as always, it is lovely to hear from you! I’ve been a bit behind on personal emails, I know I still owe you and Paula one. Sometimes I can’t keep up with the forum emails, let alone personal ones. Then add this unpleasant dizziness on top of it, and I feel a bit out of commission. I hope to catch up this weekend…

      Sorry to hear you also experience this unpleasant side effect. I’m beginning to wonder, based on how many people seem to have experienced this dizziness, that it might indeed be associated with IPF. I know it is very common that dizziness would come from being under-oxygenated, but what is stumping me is that I’m checking off all the boxes that might be linked to the dizziness and its still not resolving – ie. drinking more water, increasing my 02 needs, resting more, eating, etc. It is bizarre, but it is getting better over the past few days so hopefully that trend continues. There are probably so many things it could be, as dizziness is such a common symptom.

      I suspect maybe, based on your sharing, that I should go get my blood pressure checked. Usually it is right on parr, but my Mom really wants me to check it. Stay tuned! If it is elevated or low, I will encourage others to get their BP checked, but so far I don’t know any other resolutions to the dizziness…

      Take care,
      Charlene.

       

    • #18821
       Steve Dragoo 
      Participant

      @charlene-marshall

      Hi Charlene – Yea! you get a break today. Enjoy it.

      Yes, I used to eat sushi but I don’t recall seeing it in the Philippines strangely enough as they are surrounded and have over 7000 islands. Have to ask. I’m sure MManila does but we usually are passing through there.

      I’ll take a couple of pictures of the B complex and send it to your email so you can see how it compares.

      Have a great day – I’m packing a few (dozen) things and have an interview at noon…

      Stay well – Steve

      • #18836
         Charlene Marshall 
        Keymaster

        Hi Steve,

        Yes, I did get a bit of a break – it was nice to go out for sushi, although I am tired now. The sun is shining beautifully here, but I think I’ll take advantage of some R&R today and nap. Feeling like I need it!

        That is strange re: not seeing sushi in the Philippines, I would have thought it’d be all over there 🙂

        Hope your interview went super well, and pace yourself with all your tasks today my friend. I’ll check my email for the pics, thanks for sending them over!

        Charlene.

  • #18791
     Ed 
    Participant

    Not sure if this will help as I am a caregiver, not afflicted with this dreaded disease, but I have been having the same problem with dizziness. I started about a week ago where every time I rolled over in bed the room would start spinning and become very light headed. Also getting out of bed too fast would have the same result. Two days ago I bent down to pick up something on the floor and almost passed out. Being a stubborn man, aren’t most of us males, I put it off as a fluke. Yesterday, I was bending over the sink to wash my hair before going for a hair cut. I got so dizzy and light headed that I almost passed out. A couple minutes later I started feeling nauseous but did not vomit. This scared me enough to go to urgent care. After examination and an EKG, the diagnosis was a form of Vertigo. I was given a medication called meclizne 25 mg. It is available over the counter and is very similar to Benadryl. The DR explained that there are  canals going to your ears and eyes and crystal can form blocking one that causes the brain to miss interpret  what you are seeing and cause this dizziness and fainting. The pill just stops the symptoms and worked very quickly. The problem will usually go away by itself in a week or two. If not, there is physical rehab that can be done to rectify the problem. Another thing that made me seek treatment was watching news reports about our Detroit Lions quarterbacks wife. She was getting dizzy playing with her kids and was urged by the Lions Drs to seek treatment. Turned out she had a brain tumor. After surgery, she came home but within a day was back in the hospital. She faces all kinds of problems for the rest of her life. Her’s is a one in a million thing, but I realized it was worth me getting checked out. My wife needs me now and  more in the future.

    • #18792
       Mark Koziol 
      Keymaster

      Hello Ed, thank you for commenting. The forum appreciates your engagement as a caregiver. We are all affected by this disease. I am sorry you are a Detroit Lions fan, I live in Cleveland so I feel your pain. Thank you for providing the information regarding vertigo. I had it one time for approximately 3 weeks and it was devastating. Mine was from a partially ruptured ear drum. I hope you feel better and I thank you for being a caregiver. Keep in contact. Best wishes, Mark.

    • #18838
       Steve Dragoo 
      Participant

      @charlene-marshall

      Well, there is a dish called kinilaw that I have had it is a raw (fish) tuna salad with red onion, coconut vinegar, coconut cream, fresh ginger, and calamansi (Filipino lime) – pretty tasty too – Steve

      • #18886
         Charlene Marshall 
        Keymaster

        Oh my gosh @steve-dragoo, that sounds delicious! I would totally eat that 🙂
        I think I may have had something similar on the west coast of Canada, when I visited White Rock BC. It was delicious and so fresh! Happy May …. you’re officially in the home stretch of returning to your wife. I hope this week is going well for you.

        Cheers,
        Charlene.

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