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.
About the Author
Comments
Nancy
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
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
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
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.
Angela McKenna
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!
Ray Dallaire
I also had a lose of balance today,had to sit down.(hum)Also have pulmonary fibrosis reason why was researching it.Fibrisis might be my reason for losing balance...Ray
Charlene Marshall
Hi Ray,
Thanks so much for getting in touch and reading my column. Sorry to hear you can relate to this experience of dizziness and IPF, and about your loss of balance episode. I find this happens more and more as my disease worsens unfortunately. I hope sitting down was quickly able to relieve the loss of balance. For me, I find this is caused by shortness of breath due to the fibrosis in my lungs, leading to dizziness when I try to do too much. Hope your research reveals some answers to why this might have happened to you.
Take care,
Charlene.
john oliverio
John from Dearborn, Mi. I am a 74 year-old male. I have been recently diagnosed with IPF and am on ofev. Recently I experienced considerable dizziness and nausea. After a day long stay in the emergency and numerous tests (blood and mri's no connection was made to cardiovascular irregularities. No specific diagnosis was offered though vertigo was suspected. To relieve symptoms ondansetron hcl for nausea and meclizine for dizziness was prescribed. 6 days later I can report that that I only feel nausea when I am hungry and I am still feeling somewhat dizzy but I am functioning. Most dizziness is felt with standing up and sudden movements. I have not taken the ondansetron, but have continued to take meclizine. I have experienced a 90% reduction in coughing, throat clearing and congestion. I am reducing the dose from 25mgs 3 times per day to 12.5 mgs. twice a day thinking that perhaps the dizziness drug may be having an opposite effect. Even though that is unlikely. As I reflect back, I noticed varying degrees of loss of balance for the past few years. I attributed that to aging. Perhaps it is a result of lower oxygen levels as is suggested by other IPF patients. I also believe my hair loss "appears" to be greater as I wash my hair. My pulmonologist ask if I had any skin rashes. I replied that I have had for years pimples on my scalp. It has become more severe to the point that I am embarrassed to get a hair cut.
Charlene Marshall
Hi John,
Thanks so much for reading my columns and reaching out via the comments. Sorry to hear you're recently diagnosed with this cruel disease, and I hope you're tolerating Ofev okay. It can have some terrible side effects, but the Ofev nurses or your doctor can hopefully provide some good recommendations on how to mange them. It took me several attempts to tolerate the drug! I hope the vertigo/dizziness subside for you soon! I'm not sure about the scalp skin irritation, I've not heard of that before, however, it might be a good question to pose to the forums: http://pulmonaryfibrosisnews.com/forums/ to see if anyone else has experienced this and how to manage it? Take care! Char.
phil
Is life still worth living with this ailment ?
Charlene Marshall
Hi Phil,
Thanks for reading my column and reaching out via the comments. Tough question though, as each answer would be so subjective. In my experience, yes, living with IPF is manageable once you adjust. I'm not saying it's easy, not at all; but I've had a lot of quality-filled moments with my loved ones over the last 4 years since my diagnosis. Sometimes people's disease remains stable for months and they manage really well, and even if they have an event that exacerbates their symptoms/worsens their disease, a lot of medical professionals can help patients get feeling well again. This is just my opinion/experience of course, but yes, I believe life is still worth living with IPF/PF :)
Char.
Marj Franchetti
My husband was diagnosed with IPF almost four years ago. He has remained stable until the past few months when he started experiencing dizziness upon standing and generally feeling really unwell. We have an oximeter and blood pressure monitor and recently were provided with a blood glucose monitor. His oxygen is at 94/95 and his blood glucose is the same as always around the 7.3 mark, however when we take his blood pressure sitting down its 130/80, when he stands up and we take it, it drops through the floor to 85/40. The last time we went to the pulmonologis his FEV was 85% and she suggested we hold off on his diagnosis of IPF (which he received following a lung biopsy) so I'm really confused - has he got it or not? He has clubbed fingers and sometimes his lips look quite blue but his oxygen is 94/95 - is this normal in this disease?
Charlene Marshall
Hi Marj,
Thanks so much for reading my columns and reaching out via the comments. That said, I'm really sorry to hear of your husband's struggles! He must feel awful with a BP of 85/40. I am not a doctor or a medical professional, so this is recommendation is just merely based on my experience but I would ensure you track his readings (with the oximeter, BP and blood glucose monitor) over a period of time and what the readings are at rest vs. exertion, then definitely take them to his pulmonologist. It is important he diagnose IPF (if he thinks that's what it is) as early intervention is important in managing this disease long term. You may also ask for a cardiac work up, if that hasn't been done yet? Just an idea (again not a medical professional) but some of these symptoms can be related to heart issues sometimes.
Charlene.
Richard Cameron
Hi,
I'm 73 and was diagnosed with idiopathic pulmonary fibrosis 14 months ago. I also have ankylosing spondilitis. Last winter I developed Reynaud's disease in my hands - cold, blue, swollen, clubbed. Other strange symptoms followed ( tightening of ligaments in leg) and it appears I have an auto immune disease called systemic scleroderma - which does cause fibrosis in the lungs. I've yet to have this confirmed, yet to see a specialist, but the self diagnosis of the cause of the fibrosis seems likely. I too have dizziness whcich doesn't seem to relate to exertion or sudden movement.
Paul censki
I have been recently diagnosed with pulmonary fibrosis and I am very scared. According to readings I only have 2 to five years to live. I had been trying to find medications or treatments to prolong life. Any help in this area?
Charlene Marshall
Hi Paul,
Thanks for reading my column and reaching out via the comments. Sorry to hear you're dealing with this cruel lung disease too! Being scared in the beginning is very natural, but there are a lot of websites that can provide some support and help you through. The first thing to know is that the "2-5 year" prognosis rate or survival is outdated; that doesn't apply to everyone and I know lots of people who have survived 10+ years with PF. Check out the PF News forums to have a community wrap around you for support: http://pulmonaryfibrosisnews.com/forums/
Charlene.
Thomas Ronayne
Not sure how current this discussion is. I was diagnosed w pulmonary fibrosis and pulmonary hypertension about a year and a half ago. I had a VATS Thoracotomy and lung resection (x3) last May, have been using supplemental O2 since the surgery and use a albuterol inhaler (not convinced there is any benefit to this) several times a day.
Recently I’ve noticed that I am lightheaded more often, sometimes for hours at a time. O2 doesn’t really help and I try to be aware of activities (stairs, walking, bending, lifting, etc) that might contribute to the lightheadedness but it is still happening.
I’ve discussed steroids and other treatment options w my pulmonologist but am proceeding cautiously because I have several other morbidities. I hit the jackpot with souvenir’s from my asbestos exposures in the Navy and being a WTC 9/11 survivor and responder so balancing diagnoses, meds, lifestyle changes and a probable need for transplant has become a full time effort.
I’m rambling, sorry. So w the lightheadedness I generally have SpO2 in the 90-93 range and that is what I don’t fully understand. I do have episodes where my SpO2 drops into the 85-88 range (77 is my personal best 😁 so far) so the lightheadedness in the low 90’s doesn’t completely make sense to me.
Just curious if others are experiencing similar things. All things considered I know I could be much worse off but I’m trying to make the best of this situation and frankly, as often as not I find discussions like these bring me more clarity and perspective than speaking w my doctors.