Episodic Dizziness in Patients with Pulmonary Fibrosis

Episodic Dizziness in Patients with Pulmonary Fibrosis

It’s reasonable to assume that dizziness would be a common symptom of having poorly functioning lungs due to chronic underoxygenation. However, now that my lungs are weak thanks to idiopathic pulmonary fibrosis (IPF), the causes of my particular symptoms are more complicated. I have had occasional bouts of dizziness in the past, but these have become more frequent in the last couple of weeks.

As my lungs continue to decline, certain movements have become more difficult and can result in unpleasant symptoms. For example, bending over to pick up something almost always results in a head rush where I become dizzy and wobbly on my feet. Squatting to tidy things on the floor, engage with young children, or tie my shoe leaves me breathless and sore. I didn’t have a problem with these tasks before my diagnosis.

It might seem obvious that bending over, lifting heavy objects, or other physical exertion would cause dizziness in a person with IPF. However, I haven’t been able to link what appear to be recurrent episodes of dizziness over the last few weeks with any specific movement or activity. I asked a colleague at BioNews about this and he told me he used to get dizzy when he would stand up too quickly. However, my experience is different as I become dizzy at random moments, regardless of whether I am sitting or standing.

These dizzy episodes have continued, although I am happy to share that they appear to be subsiding. Some of the members of our Pulmonary Fibrosis Forums offered me insights into why this might be happening based on their experiences with this cruel disease.

If you haven’t checked out our forums yet, please do. There you can connect with people who are compassionate, kind, and supportive of others living with IPF.

Some forum members who also experience episodic dizziness helped me compile a list of the possible causes. Here are some of the most common reasons people with IPF might experience episodic dizziness:

  • Low blood sugar or hunger: Gastrointestinal issues are a common side effect of anti-fibrotic medications such as Ofev (nintedanib) and Esbriet (pirfenidone). Patients may lose their appetite, which can lead to low blood sugar. A nurse once told me when I was recovering from a procedure and didn’t want to eat due to the anesthesia that hunger pangs can cause nausea and dizziness. So it’s likely that if someone is eating very little, he or she could feel dizzy.
  • Dehydration: I have learned this lesson the hard way more than once. Before my diagnosis, I was always on the go, and sometimes I failed to set aside adequate time for meals or sleep. I loved my hectic schedule because it involved seeing friends and family regularly, in addition to working full-time and playing sports. However, I often paid for it because I wouldn’t give my body what it needed. I was once hospitalized for dehydration and was given IV fluids. One of my symptoms was dizziness. Since then, I make sure I am always hydrated. So dehydration is unlikely to be the cause of my recent dizziness episodes.
  • Getting up too fast from sitting: Many patients with IPF or other types of interstitial lung diseases (ILDs) have shared with me that they experienced dizziness from arising too quickly from a seated position. This dizziness is worse if they stand up after a prolonged period of sitting.
  • Low oxygen saturation: If our oxygen levels are low it means our bodies are being deprived of what they need to survive, and this can cause dizziness. Many patients with IPF have an oxygen probe to measure their levels regularly. I have not noticed a significant change in my oxygen levels either during exertion or while sedentary. I will continue to monitor my levels. At my next appointment, I will suggest to my pulmonologist that we re-evaluate my supplemental oxygen requirements. I have been wearing it more often since these episodes began.
  • Fatigue: This is a relatively common symptom of IPF, and dizziness is a side effect of being overtired.

Have you experienced episodic dizziness since your IPF/PF diagnosis? If so, do you have any solutions or remedies to share?

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!

5 comments

  1. Nancy says:

    My pulmonary fibrosis was caused by rheumatoid arthritis. In reading many of your posts describing individual symptoms of IPF, it sounds as if we have many of the same or similar symptoms. I, too, experience shortness of breath when I bend over. I certainly could be mistaken, but I thought this was caused by physically compressing the lungs as I bend over, thus resulting in less oxygen intake. Your thoughts?

    • Charlene Marshall says:

      Hi Nancy,

      Thanks so much for reading my columns and getting in touch via the comments. I’ve been reading a lot about the connection between RA and IPF; although not understanding all of it since it is mostly literature from medical journals/studies. I’ve never been tested for any type of arthritis, but I’d suspect elevated bloodwork numbers would show up if I had this? Most of my bloodwork markers (inflammation, etc) aren’t abnormally high. Maybe it is worth a discussion with my doctor though. I’m not entirely sure about your thoughts on the lungs compressing when we bend over. I don’t think that is the case, as our rib cage protects our lungs and moves with our torso, but I certainly could be wrong. Something to think about for sure. For me, the dizziness and shortness of breath when I bend over is definitely from reduced oxygen as my numbers often drop on my oximeter. Curious to hear others thoughts….

      Thanks for writing.
      Charlene.

      • Angela McKenna says:

        Living with pulmonary fibrosis.
        Hi, I am a 69 year old female. I was diagnosed with IPF four and a half years ago. Having had a bronchoscope and regular breathing tests done, it appears the cause of my lung disease is autoimmune. I am on steroids and have had a six month course of the immune suppressant drug ciclophosphomide. This seems to have been effective in as much as things have settled, with no significant progress in the last year and a half. I can have this treatment again so that’s good news. I have a very positive mindset about my illness and try to keep as active and healthy as possible. It is really frustrating not to be able to do what I used to but I
        have had to learn to pace myself. Hopefully I still have a few more quality years .

        • Charlene Marshall says:

          Hi Angela,

          Thank you so much for reading my columns and reaching out via the comments. Sorry to hear of your IPF diagnosis, although glad you have a bit of a plane to manage it, even though I know how uncomfortable and worrisome it is to be on immune suppressant drugs. Do take good care of yourself in the upcoming cold and flu season. A positive mindset is so important, kudos to you, as I know that isn’t as easy as it sounds! Keeping active is important too, I hope for many more quality years for you 🙂 Feel free to write any time!
          Charlene.

  2. Angela McKenna says:

    For Nancy added to my previous comment.

    I too have had spells of dizziness which my GP put down to vertigo. I was given antihistamine tablets which unfortunately have not helped. I really think it is an affect of the pulmonary fibrosis. It comes on for no apparent reason. I have noticed when I am stressed it is worse. I am going to mention it to the lung specialist at my next appointment in November. Will let you know the outcome!

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