I am new too the group and am the caregiver for my husband. He is 84 and was a farmer. Three yrs ago he was diagnosed with severe IPF and given the prognosis of 1-3 yrs. Last year he was hospitalized with bilateral pneumonia. He pulled through and is continnuing his battle. One of the mistifying experiences that he has often is dizziness. His doctors seem mistified with this problem.. I will be very interested to learn if anyone else suffers from he dizziness. My name is RoseMary
Hi RoseMary .. I was diagnosed PF in January, but I was also diagnosed with Hammons-Rich syndrome a year ago. I have been prescribed IV steroids & tablets when I get out of hospitalizations, but the side effects many times have included dizziness. I've experienced it sometimes with my inhalers too. Another thing to consider is low blood sugar or low blood pressure. I hope you find out what's causing it ... is frustrating not to know. Will keep all of you in my prayers. Linda
I am new too the group and am the caregiver for my husband. He is 84 and was a farmer. Three yrs ago he was diagnosed with severe IPF and given the prognosis of 1-3 yrs. Last year he was hospitalized with bilateral pneumonia. He pulled through and is continnuing his battle. One of the mistifying experiences that he has often is dizziness. His doctors seem mistified with this problem.. I will be very interested to learn if anyone else suffers from he dizziness. My name is RoseMary
Welcome to the group. Depending on which pulmonary doctor I saw at the time, I have been diagnosed with ILD, Autoimmune Hyper-Sensitivity Pneumonitis, plain PF, IPF, and now back to ILD. I am not a doctor either, and I like bb729's suggestion of a low oxygen level. In my case, I sometimes have Vertigo, so one of my other doctors gave me a Rx for Meclizine and it works for me. Good luck. @cognac.. .
I am new too the group and am the caregiver for my husband. He is 84 and was a farmer. Three yrs ago he was diagnosed with severe IPF and given the prognosis of 1-3 yrs. Last year he was hospitalized with bilateral pneumonia. He pulled through and is continnuing his battle. One of the mistifying experiences that he has often is dizziness. His doctors seem mistified with this problem.. I will be very interested to learn if anyone else suffers from he dizziness. My name is RoseMary
My name is Larry - I have recently been diagnosed with Interstitial lung disease, which I think is the same thing. My condition improved when I quit taking statins. I started taking the statins after a heart attach about 8 years ago.
My shortness of breath and congestion are still there.
Have you found anything that helps or can relieve?
I have been reading most everyone’s story. This is my take as a lung cancer survivor & Never Smoker !
I had a cough for two years. It turned into a chocking cough. My upper left back/shoulder pain grew and we bought three new mattresses in two years!
During a flight physical at Mayo Clinic where my Doctor really listened!!! and ordered a CT chest scan, was I Properly Diagnosed with a 3cm tumor in my upper left lung.
I went into surgery immediately and my upper left lung was removed along with the 3cm
tumor! A wedge was removed in my lover left lung lobe due to PF.
For five hours post surgery, my husband stood by my brad side and said, breathe,breathe! I thought i was dying!!!
We came home many weeks later. I looked at our bedroom stairs and said, I cannot do this! It hurt to move, sit, lay. Life was miserable and I could not take a deep breath.
Then a call from Mayo Oncology invited me into a Paced Breathing Study. I received a work book and a DVD that guided my breathing with symphonic tones and a voice that told me exactly how to breath, relax my Nervous system, Body & Mind!
Every Friday an oncology nurse would call.
Three (3) months later I had new life. I tracked down the genius, Dr Amit Sood and listened to him
speak about the Body Mind connection.
I have purchased and read his books. Stress Free Living; and Happiness, both are amazing!
I got back on cross country skis listening to his dvd while I moved like a slow dying turtle in the snow!
It took 1 hour to move 200 feet.
Three years later I ran my first 5k race. I ran a 5k race in 50 stayed 2011-2013.
Life insurance cancelled my policy declaring, I should be dead. So, I started running a 10 K in every continent (5 completed & 3 to run)
I breath, live and run to the beat of this paced breathing dvd. For me it works. I recently ran the PHX Marathin 10k and fell down. A woman yelled “Get Up! You Can Finish This Race. Run With Me!”
She like Dr Amit Sood is from India. I thanked her and shared my short story about lung cancer and breathing with my diaphragm and paced breathing! She said, “I know, it is how I run and breath also!”
So, with proper and early diagnosis, and with proper treatment ; mine was at at Mayo Clinic ...despite local doctors telling me that my cough was psychological!!!” I’m alive and I’m thriving and living to Connect with you.
I believe there is hope with proper diagnosis and proper treatment and certainly a better quality of life.
hi any one out there with this problem,? i have had for several years now, bad cough, now my right side started to hurt, doc gave a cat scan, it shows a spot on my lower left lung i have an appointment sep 5th at mayo hope they can figure this out i also have heart problems, two years ago open heart valve repalced now pace maker and diffib meds have caused some cough but changed and now little better should i worry about the spot ?? i fear it is cancer but they didnt say that ok thnaks.
My husband has severe IPS and is on oxygen 24/7 He tries to go without it but becomes out of breath very quickly when he leaves it off. We were able to get a portable oxygen unit but it is still awkward to try to juggle a ane and oxygen so he finds going outdoors very difficult. His biggest complaint is weakness and dizzy. I have tried and the Dr.has experimented with drugs to try and find a reason for the dizzy but so far nothing. I would be interested to know if any other IPF patients experience this and what do they do about the dizzy feeling.
Dear LLwortman..your posting was so uplifting and hopeful.. i have realized that when i think of it I can control my breathing and to replace worry full anxiety thoughts wth breathing right thoughts helps so very much.. where can you get Dr Snood’s tape that teaches you what seems like all the right things you need to know. I Am so happy for you to hear all of your wonderful accomplishments and the positiviness just oozes from your words.. thank you so much for sharing that with us..
Alaine
Dear Alaine:
Thank you for your kind words. If it is permissible, I would be delighted to send up a copy of the
healing Paced. Breathing via email. I do not believe it is available otherwise.
Hugs
Dear Alaine:
Thank you for your kind words. If it is permissible, I would be delighted to send up a copy of the
healing Paced. Breathing via email. I do not believe it is available otherwise.
Hugs
I can only send it to an email from my itunes...unless John or someone can guide
me on how to send it another way.
Always happy to share. It even helps me sleep if I wake up at 3:00am!
linda
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Hi RoseMary .. I was diagnosed PF in January, but I was also diagnosed with Hammons-Rich syndrome a year ago. I have been prescribed IV steroids & tablets when I get out of hospitalizations, but the side effects many times have included dizziness. I've experienced it sometimes with my inhalers too. Another thing to consider is low blood sugar or low blood pressure. I hope you find out what's causing it ... is frustrating not to know. Will keep all of you in my prayers. Linda
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Like -
Helpful -
Hug
2 ReactionsWelcome to the group. Depending on which pulmonary doctor I saw at the time, I have been diagnosed with ILD, Autoimmune Hyper-Sensitivity Pneumonitis, plain PF, IPF, and now back to ILD. I am not a doctor either, and I like bb729's suggestion of a low oxygen level. In my case, I sometimes have Vertigo, so one of my other doctors gave me a Rx for Meclizine and it works for me. Good luck. @cognac.. .
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Like -
Helpful -
Hug
1 ReactionThank you vertigo has been talked about. Bob' loos pressure fluctuates but is never really low.
Do you use the O2 when exercising? I agree exercising and lifting weights for muscles strenth have helped me maintain my physical capability.
I have been reading most everyone’s story. This is my take as a lung cancer survivor & Never Smoker !
I had a cough for two years. It turned into a chocking cough. My upper left back/shoulder pain grew and we bought three new mattresses in two years!
During a flight physical at Mayo Clinic where my Doctor really listened!!! and ordered a CT chest scan, was I Properly Diagnosed with a 3cm tumor in my upper left lung.
I went into surgery immediately and my upper left lung was removed along with the 3cm
tumor! A wedge was removed in my lover left lung lobe due to PF.
For five hours post surgery, my husband stood by my brad side and said, breathe,breathe! I thought i was dying!!!
We came home many weeks later. I looked at our bedroom stairs and said, I cannot do this! It hurt to move, sit, lay. Life was miserable and I could not take a deep breath.
Then a call from Mayo Oncology invited me into a Paced Breathing Study. I received a work book and a DVD that guided my breathing with symphonic tones and a voice that told me exactly how to breath, relax my Nervous system, Body & Mind!
Every Friday an oncology nurse would call.
Three (3) months later I had new life. I tracked down the genius, Dr Amit Sood and listened to him
speak about the Body Mind connection.
I have purchased and read his books. Stress Free Living; and Happiness, both are amazing!
I got back on cross country skis listening to his dvd while I moved like a slow dying turtle in the snow!
It took 1 hour to move 200 feet.
Three years later I ran my first 5k race. I ran a 5k race in 50 stayed 2011-2013.
Life insurance cancelled my policy declaring, I should be dead. So, I started running a 10 K in every continent (5 completed & 3 to run)
I breath, live and run to the beat of this paced breathing dvd. For me it works. I recently ran the PHX Marathin 10k and fell down. A woman yelled “Get Up! You Can Finish This Race. Run With Me!”
She like Dr Amit Sood is from India. I thanked her and shared my short story about lung cancer and breathing with my diaphragm and paced breathing! She said, “I know, it is how I run and breath also!”
So, with proper and early diagnosis, and with proper treatment ; mine was at at Mayo Clinic ...despite local doctors telling me that my cough was psychological!!!” I’m alive and I’m thriving and living to Connect with you.
I believe there is hope with proper diagnosis and proper treatment and certainly a better quality of life.
linda
-
Like -
Helpful -
Hug
2 ReactionsMy husband has severe IPS and is on oxygen 24/7 He tries to go without it but becomes out of breath very quickly when he leaves it off. We were able to get a portable oxygen unit but it is still awkward to try to juggle a ane and oxygen so he finds going outdoors very difficult. His biggest complaint is weakness and dizzy. I have tried and the Dr.has experimented with drugs to try and find a reason for the dizzy but so far nothing. I would be interested to know if any other IPF patients experience this and what do they do about the dizzy feeling.
-
Like -
Helpful -
Hug
2 ReactionsDear LLwortman..your posting was so uplifting and hopeful.. i have realized that when i think of it I can control my breathing and to replace worry full anxiety thoughts wth breathing right thoughts helps so very much.. where can you get Dr Snood’s tape that teaches you what seems like all the right things you need to know. I Am so happy for you to hear all of your wonderful accomplishments and the positiviness just oozes from your words.. thank you so much for sharing that with us..
Alaine
-
Like -
Helpful -
Hug
2 ReactionsDear Alaine:
Thank you for your kind words. If it is permissible, I would be delighted to send up a copy of the
healing Paced. Breathing via email. I do not believe it is available otherwise.
Hugs
-
Like -
Helpful -
Hug
1 ReactionHow very kind of you Linda, i would appreciate it so much.. thank you.. big hugs back to you
I can only send it to an email from my itunes...unless John or someone can guide
me on how to send it another way.
Always happy to share. It even helps me sleep if I wake up at 3:00am!
linda