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    • #26750

       

      Hi Forums Family,

      Happy New Year! @mark-koziol and I are happy to start 2021 with you as your forum moderators, and we look forward to another year of authentic support, sharing experience(s) and helpful discussions about IPF/PF on this site.

      I wanted to ask about dizziness today! I wrote an article about this in 2019 as I remember experiencing episodic dizziness during that time. I understand this symptom is connected to fluctuating levels of oxygen in patients with IPF, especially if we have a prolonged period of time with low 02. I also know dizziness can be associated with so many other factors, some completely exclusive of IPF: dehydration, medication side effects, sinus congestion, ear infections, etc.

      I woke up this morning on day 3 of just “not feeling quite right”. I have a slight headache, just enough to be a nuisance and causing me to stay on top of Tylenol but also a stiff neck/shoulders and …. dizziness! I’d prefer not to take any additional medications, like narcotics, to rid the pain so I’m hopeful for any additional insights into what this might be. Of course, if it persists I’ll speak with my doctors. However, I’ve made sure I’m well hydrated and rested. I also don’t think I have any sinus congestion or an ear infection. I’m particularly dizzy when I move my head from side to side.

      Has anyone experienced a similar dizziness to what I’m describing?

      Were you able to identify the cause, and if so, what was it?

       

      Thanks in advance for any advice you can offer. I’m sure I’ll be fine, but it never feels good when you just aren’t yourself for a few days.

      Char.

       

       

    • #26752
      Ron Reid
      Participant

      I often experience morning dizziness when I get out of bed, especially if I am moving my head from side to side.  Also get temporary dizziness when bending over.  My oxygen levels are OK; just seems to be something associated with IPF.

       

      • #26783

        Hi Ron,

        Thanks so much for writing, though so sorry to hear you also deal with this pesky side effect of IPF. It’s sounds like feeling dizzy in the morning or when we get up from sitting to standing is a lot more common than I imagined. My 02 levels also seem to be okay when I feel this way, which is strange. Thanks again for connecting on this topic Ron.
        Char.

      • #26797
        Libby Fisher
        Participant

        Hi Charlene,

        I have had problems with dizziness for a long time.  Sometimes I get the Benign Positional Vertigo where I can’t turn my head quickly… I perform the Epley maneuver a couple of times which gets the offending crystals to reposition themselves in the ear canal.  I think BPV is one of the most underdiagnosed causes of dizziness and it can be corrected if that’s your problem.

        But mostly, I just experience dizziness.  I went through all my medications and found that most of them carry warnings about dizziness.  One is Mucinex, so now I wait and take that after I’ve had a good breakfast which also helps prevent the nausea that it was causing.  I also find that the proton pump inhibitors (Prilosec, Nexium) and even a larger dose of Pepcid AC (suggested by my gastroenterologist) all contribute to dizziness.    Some days I can’t exercise in the morning because I get too dizzy…it seems better in the afternoon.  My blood pressure seems fine so I really can’t pinpoint a reason.

        I have also had a lot more sinus issues and headaches now that winter is officially here.  Keeping the house humidity at a comfortable level really helps.  Occasionally I take a decongestant if I feel too stuffed up and dizzy.  Lots of tea and water too.  It’s quite a balancing act, right?

        Good luck to everyone… .
        Libby Fisher

        • #26813

          @travelingnana

          Hi Libby,

          Thanks so much for writing regarding this topic. You’ve given me some great points to think about!

          I’m going to look into the BPV, I’d never heard of this before and the dizziness is definitely attributed to moving my head/turning it quickly. Thankfully, these last few days it has been much improved but I feel as though I am on high alert to figure out the cause and hopefully prevent it in future. If it is this BPV, I’m glad it sounds easily corrected.

          All my medications also list dizziness, but I haven’t started any new or changed the doses recently so it would be odd that this side effect is starting all of a sudden. I did add Melatonin to my nighttime regimen as I was having a hard time sleeping, and I read the prolonged use of that can cause dizziness. Though, I don’t know if the 2-3 weeks that I’ve been taking it would be considered “prolonged use”. In any case, I’m going to try to stop taking it and see if it makes a difference.

          My blood pressure and 02 are also fine so I’ve ruled those out as causes too.

          Perhaps I do have some sinus congestion or something contributing? I don’t feel it yet but I know congestion in the sinuses and ears can set off balance, etc. Thanks again for writing, it sure is quite the balancing act!

          Take good care,
          Charlene.

    • #26760
      Carolyn
      Participant

      I have experienced dizziness sometimes in am after breakfast. I have days to hen it lasts on and off throughout the day just sitting,standing , walking. I have not been too successful in getting it figured out. I do have other conditions ( congestive heart failure, digestive issues). This week my dr prescribed a 6 day course of prednisone and I also started a peptide. My dizziness has been very short lived. I am anxious to see what happens when I reduce the prednisone. Does anyone take prednisone daily and if so what dose?  Also has anyone found a nebulizer to help?

    • #26762
      Edward Grant
      Participant

      I have experienced dizziness in the morning but thought it was from getting up too fast (well not too fast lol)! I use a nebulizer usually twice a day and find it helps get the mucus up. However the medicine makes me extremely shaky in not only my hands but my stomach also.  My nebulizer and oxygen attaches to a Volara machine by hillrom which expands the lungs and really helps. I also have additional conditions which makes it more difficult. Today is one of those bad coughing days which seems to come out of nowhere.  I find there is  a lot about this disease I don’t understand and like y’all don’t quite know how to deal with.

      • #26785

        @edot (love this username, by the way!)

        Hi Edward,

        Thanks so much for sharing your experience with us, though sorry to hear you’re dealing with dizziness too. Interesting that the nebulizers help with mucous, this isn’t something my doctor’s have even spoken to me about though I know some other IPF patients use these machines to help them. Hopefully the difficult day you were having with coughing has subsided, and you’re doing okay. Thanks for writing.
        Char.

    • #26769
      Steve Dragoo
      Participant

      @charlene-marshall

      Hi Charlene,

      I do have slight dizziness sometimes but I just attributed it to my dimming brain erosion – it happens when you get older…

      Seriously though it can be unpleasant and thankfully short-lived. I know you certainly know this but when you get a stiff neck or upper back, it is low O2 overtime – sometimes. Please monitor it then.

      Wellness,

      Steve

      • #26787

        Hi Steve,

        Thanks so much for chiming in and sharing your thoughts on my experience of dizziness. It was terrible the last few days, but dare I say it: seemingly better today! I did increase the 02 I used overnight and adjusted my pillows in a different way, so I’m hopeful that helped support my neck better. I wonder if a pinched nerve could have caused my dizziness? The pain in my neck and shoulders seems to be a lot better today too. Hopefully that is the trick!
        Char.

        • #26802
          Steve Dragoo
          Participant

          @charlene-marshall

          Hi Charlene,

          When I was bed ridden sick a couple months ago, I had various nerves/muscles pain firing off in my upper back, right shoulder and upper arm, and neck.  Not pleasant at all as I rarely got comfortable. I know part of that had to be an O2 problem and probably an imbalance in electrolytes / enzymes as I stopped eating, taking any pills, and barely consumed any water for 7 days. Sadly coffee had to go – should have had a cup of Kona first…

          Maybe it’s time for a blood profile for you. My last one a couple years ago showed I was low vit. D3 and was already taking 2000 iu (50 mcg) a day.

          Stay well,

          Steve

        • #26817

          This definitely might be something for me to consider Steve, I agree! I have blood work coming up in a few weeks, so I’ll mention these side effects to them so they can run any tests that might give answers to the dizziness. Thankfully, it is improved this week so I’m wondering if it is muscle related? Fingers crossed it goes away completely within another few days.

          Take care and thanks for writing!
          Char.

    • #26771
      Bob Rawlins
      Participant

      Interesting topic for sure.

      I have experienced dizziness from time to time and mostly when I am over exerting my activity without the proper oxygen flow.

      Amazing how I used to be able to do some normal chores but forget at times the oxygen I need to get certain things done. That’s when I can get light-headed.

      I’ve been on prednisone for almost 5 years now. My maintenance dose is 10 mg a day but it gets bumped up by my doctors at times when my tests are not so good. However, being on OFEV now we are trying  to get off all together.

      I get sluggish for a few days if I have been on a higher dose and come down, I’ve been told that is normal with prednisone.

      I bruise easier, but it has been a miracle drug for me for the most part.

      Hope this helps

      Bob Rawlins

      • #26782

        Hi Bob,

        Thanks so much for sharing your experience with dizziness and IPF, though, sorry you’re also dealing with it! Like you, I suspected my dizziness would be associated with reduced levels of 02 or activity and not getting enough oxygen. However, that didn’t seem to the case for me, oddly enough. I’m thinking maybe I had a pinched nerve in my neck or something because that feels quite a bit better today and my dizziness is also improved quite a bit. I will still keep an eye on it for sure though. Thank you again for writing and sharing your experience!

        Charlene.

    • #26777
      Sam Bilotta
      Participant

      Hi Charlene

      Happy New Year ! 🍾🥂 Its been awhile since I chimed in with comment on a topic .

      Anyway just wanted to let you know that I too have these so called dizzy spells , slight headaches in the morning and have the same feeling of ” Not a Good Day ” some days. I have been checking my blood pressure regularly it seems to be ok but I booked an appointment with my Family doctor just make sure. She said that my blood pressure is fine and that should take it ” real slow” when getting out of bed in the morning and when I’m sitting or bent over position. So now I’m doing that but still some days I still get Dizzy.

      On Dec 8th I had an appointment with my Pulmonologist before seeing her I did the usual breathing tests which show that I have been keeping myself at the same level which is a good thing. But when I did the 6  minute walk test I was half way through it when I got dizzy and nearly fell over . The person in charge of doing the test grabbed me just in time and had me sit down on a chair. My doctor came to check asked a few questions and had me wheeled down to Emergency.  They did an ECG and it normal did blood work and found hemoglobin low wbc  high and hemacrit low . They also found that my Iron was low so the prescribed Iron pills. As for my dizziness I still get them not as often though .

      Now with this pandemic I dare not venture out plus I’m afraid to go out for a walk in case I get Dizzy again  I’m even afraid to go on the treadmill to exercise.  I really don’t think that the doctors have figured it out yet . In my honest opinion (we all have one) it’s the lack of Oxygen to the brain at night that cause all these weird feelings in the morning..

      Anyway just thought I would share my story on the topic .

      Sorry for the long read

      Sam Bilotta

      Btw just to let everyone else know my Mom had the same disease and symptoms 20yrs ago . Back then there was no OFEV all they prescribed was a high dose of steroids which made it worse for her . The Research on IPF has come a long way and it’s great to know that scientist out there are still at it. HOPE

      Sam

       

      • #26780

        Hi @sambilotta

        Thanks so much for sharing your experience with dizziness, along with the findings of your bloodwork after the episode at your 6 minute-walk-test. That must have been scary! I hear you on the reluctance to do certain things, especially outside or exercising, out of fear that the dizziness will return. I will also take note of your doctor’s recommendations to take it real slow in the mornings. I think your theory of reduced 02 to the brain during the night makes sense as well.

        Thankfully, I am on the mend in terms of dizziness and can’t help but wonder if maybe I had a pinched nerve in my neck or something? I took a narcotic pain medication (unlike me) to alleviate the discomfort in my neck and shoulders, which I suspect may have been contributing to the dizziness, especially moving my head from side to side. Today seems better but I’ll still keep a close eye on it!

        Thanks again for writing and hope you’re doing as well as possible. Stay safe and happy 2021!
        Char.

    • #26778
      Carolyn
      Participant

      Thanks for sharing your stories about the dizziness.

      Carolyn

    • #26784

      Hi Carolyn,

      Thanks so much for writing re: your experience with dizziness. I’m also curious about the association with the medications you’ve started and the dizziness subsiding. It sounds like Bob takes prednisone per his post, and Edward uses inhalers. Unfortunately, I think this side effect is more common than I thought it was and may just be another pesky part of the disease. I hope your dizziness subsides soon!
      Charlene.

    • #26788
      Susan Howitt
      Participant

      Hi

       

      I used to have horrific dizzy spells, for instance if I was shopping and got to the check out and stood still, spells were always when I stood still after a bit of an effort, I would have to grab something to steady myself. I am now on liquid O2, brr so cold on the back, instead of the O2 (oh lor can’t think of the English name for those machines) recouperator, and I no longer have the dizzy spells. It has to be lack of oxygen because I am now on a much higher flow and I may puff with effort but don’t get dizzy.  I have CPFE not IPF.  I have a back pack for going out and a nose hose for the house.

    • #26790

      Hi Susan,

      Thanks so much for sharing your experience with us re: dizziness and 02. I’m glad the liquid 02 seems to have helped with this, that is excellent to hear. I hope it lasts! Happy new year 🙂
      Char.

    • #26792
      Carlo De Pellegrin
      Participant

      I was diagnosed with IPF end of September, 2020. I have been on Esbriet since, so just mid month four. Although diagnosed recently there were signs of lung deterioration 5 years ago. I was getting annual CT scans to keep an eye on me lungs since I had a VATS lobectomy for carcinoid cancer almost 9 years ago. My first few months with Esbriet were good, but the last month or so the nausea and dizziness have been a problem. I am not on oxygen and walk on a treadmill 3 or 4 times a week for 30 minutes at 2.7 miles per hour.
      Could someone please tell me i am going to live forever?? Ok, so if I don’t get immortality, can I get a comparison to your status, especially the nausea and dizziness. I just went downstairs to get my oximeter and O2 was 97, HR mid 80s, now 3/4 minutes later HR down to 66.  All this really to say that I think the dizziness and nausea are related to the Esbriet. al comments apprecaited.

      Carlo

      • #26799
        Steve Dragoo
        Participant

        @carlo

        Hi Carlo,

        Have you checked your BP under various stresses on the body? Has your pulmonologist looked at possible PAH (pulmonary artery hypertension)? Two possible issues as IPF develops. Many don’t have these problems so it may be as you suggested the Esbriet.

        Stay well,

        Steve

      • #26816

        Hi Carlo,

        I’m so sorry to hear you’re dealing with the nausea and dizziness as well! Unfortunately, the two anti-fibrotic medications can be quite rough in terms of side effects, so it could be the Esbriet. I’ve heard of a few patients having to switch after several months on one drug to the other (not necessarily from Esbriet to Ofev, sometimes the other way around too) due to side effects. Can you connect with your Esbriet nurse to discuss these with her and obtain her thoughts? If not drug side effects, maybe be worth more investigation into the cause. Let us know what you find out, and I hope the side effects subside quickly for you. Hang in there, and kudos to you for continuing to exercise – that is not easy with this cruel lung disease!

        Charlene.

    • #26793
      Carolyn
      Participant

      I have read numerous articles on this disease and can’t say I’m any wiser.  I am on 02 24/7.  I see people on either Esbiret or Ofev switching the drug. With my Ofev there is a support group provided by the drug company that I correspond with.   They have a nurse on call 24/7. I just started with them and they will have a nurse call me monthly. Does Esbiret have a support group?  Good luck.

    • #26814

      Hi Carolyn,

      Thanks for writing. Yes, IPF is a complex disease for sure! There is so much to know/understand and many physicians are still working on that themselves.

      As for your question about Esbriet, I can’t be sure as I am on Ofev too. Does anyone know if Esbriet has a support group patients can connect with if need be?

      Char.

    • #26822
      Karen Martin
      Participant

      Hey, Charlene.  Sorry to hear about your problems.  I have dizziness from time to time also.  In some cases it can be caused by poor circulation or meds, but you can also have tiny crystals in the inner ear that cause movement in the fluid in your inner ear that makes you dizzy.  There are exercises you can do to help with that if you want to do a little research.  (How To Balance Crystals In Your Ear (thealternativedaily.com)  As for the stiff neck and shoulders, that might be unrelated and perhaps one of two things could be the cause there.  Stress, of course, is always a culprit you can look at but there is also “tech neck.”  If you spend much time on devices/reading and bend your neck forward to do so, you can be causing some of that problem without realizing it.  I find it helpful to take a break and sit where I can rest my head at a slightly backwards tilt to ease the stiffness.  Adding a little heat is always nice, too.  I hope you get some relief for your issues soon.  There is enough to deal with on a “normal” day, right?

      Karen

    • #26831

      @casey

      Hi Karen,

      Thank you so much for sharing your thoughts and these resources with me re: the dizziness and stiff neck/shoulders. I’m happy to report the dizziness is much improved this week, but I do still have some issues with my neck. Unfortunately, I think the culprit is what you suggest: “tech neck” and stress. I’ve been more mindful the last few days of stretching my neck and taking breaks! I wish it wasn’t “COVID times” right now for many reasons of course, but among them is that I believe a massage would really help.

      I will also take a peak at the inner ear crystals information, I had no idea about this! Thank you so much for sharing 🙂

      Take care and I hope 2021 is off to a good start for you.
      Hugs,
      Char.

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