August 24, 2018 at 5:11 am #14074
It is likely inevitable that patients living with a chronic lung disease, such as pulmonary fibrosis (PF) will experience cognitive effects in addition to the physical implications of this disease due to the oxygen deprivation PF causes. Without adequate oxygen to the brain, even while using supplemental 02, it is not uncommon for patients to feel mentally “foggy” following the diagnosis or progression of PF.
Unfortunately this is something I fear that I am experiencing as my own diagnosis of idiopathic pulmonary fibrosis (IPF) gets worse. Lately I am feeling a bit slower mentally as I complete tasks both around the house and at work. Specifically while at work, I feel as though I am forgetting small and tedious, but important and common tasks that I’ve been doing for years (ie. documenting communication with the families I work with in our database). I’ve always done this, and yet the simple task of doing so seems to elude me lately. I also just feel extremely mentally exhausted on a regular basis, even after only a partial day at work. So much so that I sometimes worry about driving myself home safely because I just feel so mentally exhausted.
Have you experienced an increase in mental exhaustion since your IPF/PF diagnosis?
Was there a particular time or indicator for when you started noticing this (ie. when your 02 needs increased, etc)?
Another thing I really noticed today while at work was my lack of ability to understand multi-step or complex processes. I always used to love identifying and establishing processes for efficiencies in my work, and for collaborating with other teams. Today while in a meeting, I had such a hard time following a new process we were establishing that had multiple steps.
Do you have a harder time understanding/processing or following multi-step instructions?
If you’ve experienced or are experiencing the things I am newly noticing in terms of my mental exhaustion or “fogginess”, I’d love to hear from you. Specifically about when you noticed this, how you combated it (maybe quit working?) and/or any insight around how to manage it better.
Thanks in advance!
August 24, 2018 at 12:56 pm #14091BillParticipant
Yes to all of the above.
The problem is, I am trying different medications to stifle the incessant cough which may be a contributor. I really get foggy with gabapentin but it seems to help a little. I quit it because of the fogginess. I am and present trying Tessalon but again it doesn’t seem to be very effective although I still get fogginess to a lesser degree. I have also tried Revatio which didn’t seem to help at all. While going through these experiments I experience memory loses on a temporary basis. Meaning, I try to think of a word but it escapes me so I find a synonym. I watch movies and try to remember actors names from old or new and cannot remember them until hours later when it pops into my head, So I do not know if my memory problems stem from the medications or the IPF. I will let you know as soon as I know the cause. The best bet I can recommend is not to try so hard to remember as I have found as soon as I relax and do not think about it it comes to me.
Lack of oxygen is definitely a factor. Not good for the health of the brain. I noticed this when I took a turn for the worse in February. I was diagnosed in 2010. (my speling has suffered also) 🙂
August 26, 2018 at 8:20 am #14106
Thanks for getting back to me regarding this topic. It is one I am really curious to hear from others’ about, as I would imagine it is a common experience but maybe not one that is readily talked about!
I hope you’re able to sort out the right combination of meds to get settle the cough, especially with an option that doesn’t leave you too groggy. Do you find you get a bit foggy when you’re weaning medications off, in addition to starting new ones too? I find weaning medications off is almost worse for me, and it gives me such weird dreams/sleep interruptions. Have you tried a combination of inhalers at all to suppress the cough? Sometimes doctors try this and sometimes they don’t, I’m not sure how effective they are in helping with an IPF cough but I am on 3 inhalers that I think help with the cough.
I can relate to your short-term memory struggles and how frustrating they are! Sometimes I can’t think of common names, or I can’t recall conversations with specific people. It really upsets me, and I think it must be IPF-related because I’m not always changing meds when I experience this. I need to take your advice and not let it bother me so much, I agree. Once I relax a bit, what I’m trying to recall will probably come to me.
Take care and thanks again for sharing your experience. If you find out anymore on this topic, I’d love to hear from you.
August 28, 2018 at 12:37 pm #14155Sandra VanzylParticipant
hi Bill, I have def had some brain fog with ILD….it was especially bad when I was on prednisone so I was slowly weaned off of that. For the cough I use Tussenix which is very very helpful…it’s a prescription so call your doctor to ask him for a prescription for it….itvis an opioid but as my RN said…when you use an opioid for the purpose it was made for you will never get addicted ….I don’t take it all the time…but my cough is brutal…lasting 10 – 15 min and a few weeks ago ine lasted 45 minutes , that was a bad day. I’m am going for Lung Transplant assessment in a few weeks and pray that I’m accepted for the transplant list ! This is a tough disease to battle with and I have been battling this cough for over 15 years and just not diagnosed until about 5 or 6 years ago . I am on oxygen 24 /7 since January when I was hospitalized with pneumonia . Best Sandy
August 30, 2018 at 12:57 pm #14207
Thanks for getting in touch with us! While I know your reply was to Bill, I am curious when you said the mental fatigue was associated with Prednisone. You were weaned off this steroid due to the mental fatigue it is causing? This is something I want to remember in future as I am often put on Prednisone for other things, and it is always a fight when I advocate for wanting to come off of it. I will remember to bring this up next time!
I love how your RN phrased the comment about opioids. Good for him/her to say this!
Praying your transplant assessment goes well also. Please keep us posted, sending you all my good thoughts, vibes and prayers.
August 28, 2018 at 1:36 am #14146Joyce DouglasParticipant
Hi Charlene. It has been a while since I was in touch. Well, I made it to our 60th wedding Anniversary and had a very nice visit with family and a few friends. It wasn’t a big party, just a celebration of life together over the past 60 years. One of my goals has been reached and I am so happy.
Regarding the brain fog. Oh yes, I can definitely tell when my oxygen needs to be increased to 3l up from 2. I also do need it to be on 3l both on my POC and the home concentrator. I wasn’t aware that the levels of oxygen received were different between the two. Maybe I need to reconsider how much I need when I walk any distance. I do find that I just cannot seem to remember to breathe in through my nose. With my mouth open I get more air, but it doesn’t help the lungs if the aveoli don’t receive the oxygen from my mouth’s air! Why would I not remember such an important step. Also, I do completely forget to take my Esbriet if they are not right beside me! This is a very important step in keeping the fibrosis at bay…I think my brain fog is beginning to settle in to a type of pea soup fog (like in London, Eng.). One day when I wasn’t feeling well and spent most of it lying down on the bed resting I also forgot to take my medications for other health help. I have changed from pill bottles to having the pharmacy put them in a dose pack. That has helped some, but still I need a reminder from my husband to ‘take the pills’.
I haven’t been able to multi-task for some time now and don’t even try it anymore. Good for you for keeping up the challenge. Very proud of your persistence and your determination. Great going there gal.
August 30, 2018 at 12:47 pm #14204
Joyce…. Congratulations on your 60th anniversary! How wonderful, and I truly hope you and your partner had a wonderful celebration. That is certainly worthy of one! I am so happy for you both, congrats again 🙂
It has been awhile, but that’s alright – it is always nice to hear from you, and just glad to hear you’re still doing as well as possible. Sorry to hear you also experience the brain fog, and can identify when you need to increase your supplemental oxygen needs. I haven’t quite figured it out yet, but am starting to feel a lot more “foggy” in general, when it comes to my mental alertness. Due to this, I think I might actually talk to my doctor about increased my 02 needs in general. I also just got prescribed a very small dose (just 10mg) of a medication that is to help with sleep a bit, as I’m really struggling with this. Of course, a lack of sleep would also contribute to feeling mentally foggy too!
I think it is the quality of oxygen that differs between what is given through a POC vs. a tank. I’m not sure if the amount delivered is different? I haven’t heard that but that doesn’t mean it isn’t the case.
I also forget important things like medication doses, or relaying information to the doctor at appointments. It’s frustrating to forget such important things to our health, isn’t it? My Mom is a pharmacist and has actually been recommending that I do the bubble packaging to help with which ones need to be taken when. Since letting me know this has been helpful for you, I think I’ll also consider it. Thanks for sharing that information with me.
So appreciate your kind words as well. Just trying to do the best I can, as I know we all are. Kudos to you too! Anymore speaking engagements scheduled?
Thanks again for writing, it is nice to get an update from you.
August 28, 2018 at 12:06 pm #14153Patricia HaydenParticipant
NOW THAT MAKES SENSE. i DID NOT CONTRIBUTE THE FOG TO THE DISEASE BUT TO MY AGING. THANKS EVERYBODY FOR POSTING TO THIS. I BELIEVE IT IS THE DISEASE AND THE MEDS NOW AND WILL GO A LITTLE EASIER ON MYSELF. BE SURE TO LET YOUR CAREGIVERS AND FRIENDS AND FAMILY KNOW ABOUT THIS. MIGHT HELP THEM TO UNDERSTAND AS WELL.
August 30, 2018 at 12:49 pm #14205
Thanks for writing and sharing a bit about your experience with brain fog.
Yes, unfortunately I think that is a very real symptom of a chronic lung disease due to being under-oxygenated. However, like you, I never really attributed my IPF diagnosis to being the cause of feeling mentally foggy. Sorry you’re experiencing this too!
Good idea to tell the caregivers and friends about this too. I hope mine understand! Are you on oxygen yet Patricia? If so, its a good idea to also have your oxygen requirements re-evaluated (I am going to start this process…) as that could be causing increased mental fatigue too. Just an idea 🙂
Thanks for writing.
August 28, 2018 at 2:57 pm #14158Susan HowittParticipant
I thought the *brain fog* was due to getting older !!! going round in circles trying to remember important things. I have no one to remind me to take pills. I remember ones in the morning but rarely at other times, only just remembered one of my dogs medications for this evening, my dogs are what I live for, determined to outlive them, they are rescue dogs that have had the most traumatic lives, I specialise in taking on the hard cases, have three left, they are all long lived breeds and are in the 8/9 age group. I have made arrangements for all of them as in my heart of hearts I know I wont make it that long with CPFE, probably already had it 5 years undiagnosed as hospitalized then three times with breathing problems, diagnosed with asthma. Will know tomorrow if I can (or am willing) to start Esbriet, the fact that I have only one kidney might be the deciding factor. Been diagnosed 6 weeks and am lucky to have the top specialist in the country as my doctor and only living 60 kms away. Not that I can ever remember how to get there, have to have some one with me to direct me, bad passenger (sea sick) so I drive. Live out in the sticks, tiny hamlet in the mini mountains.
August 30, 2018 at 12:54 pm #14206
Thanks for your reply and contributing to this thread! I’ve heard many, many people say they think the mental fatigue or “fogginess” is coming from getting older. While some of it may be, I recently asked my pulmonologist about this annoying symptom and he said without a doubt, those of us living with a chronic lung disease will experience more mental fatigue than someone else our age(s).
Joyce actually just suggested getting blister packs from the pharmacy with all our AM/PM meds together so we just pop the pack and take them all at once. My Mom has been encouraging this for quite awhile, but now that I know it helps her remember which pills to take and when, I think I am also going to try this. Might this be an idea that would help you too? Otherwise, I usually set the alarm on my fitbit (vibrates on my wrist, so it doesn’t alarm anyone else) as a reminder to take my meds.
You sound like such a wonderful person to rescue dogs. I live for my dog as well 🙂 she is just the light of my life most days and I am also determined to outlive her.
How did the decision re: Esbriet go? I am on an anti-fibrotic medication and have kidney troubles too so hopefully this doesn’t stop the doctor from allowing you to be on it. Sounds like you have an excellent doctor, and I am glad to hear that. Was it this physician that was going to determine whether or not you could start Esbriet? Curious to hear how your appointment went.
Thinking of you!
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