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Constant Need to try and take deep breathes
Hello all. So I’ve been experiencing strange issue with my breathing for over a month now. A little background, I’m a life long asthmatic and also was a smoker for the last 12 years. Terrible, I know. I quit on January 23rd (for the second time) after I randomly started having this “attack.” Since that night I have struggled the breathe normally. I went to the ER and urgent care who did blood work, EKG and chest x-ray. All came back well. They diagnosed it as dyspnea and sent me on my way with a 5 day course of prednisone. The first week after this started was terrible. I was out of breathe just talking. Since then it’s calmed down but I’m always having to try and force a deep breath. I feel like I’m struggling every day to breath normally and have not felt 100% since then. I have a pulmonary function test on the 18th of this month after seeing a pulmonologist who also started me on an inhaler steroid (symbicort). Does anyone have any clue what this could be or experience the same issue? I know many can chalk if off as anxiety but I assure you this is well beyond anxiety. I just don’t know what to do anymore. I’m so beyond over feeling this way day in and day out.
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9 Replies
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Hi Anthony sounds like someone talking about me my advice is run don’t walk to the best pulmonologist and heart doc you can find someone who experience in ph.
I to experience well it’s anxiety asthma and it’s not.i now are at Temple heart and lung in Phil my pressure is at 70 via heart cath the gold standard for ph
On oxygen 24/7
You are not alone we are all in this togeather
carol -
Hi,@aquigley93, I am sorry to hear of your struggles with breathing. I think that the PFT may offer some answers but I would ask to see a doctor who is well-educated in PH if possible.@carol-alexander says it well!
Hoping that you can get some much-needed relief and answers. I would suggest asking for an Echo or Right heart catheter (RHC). RHC is the “gold -standard” and would be the best test to have done if possible. Echoes are often done in between and by doctors who want to do more non-invasive testing. Have they tested your oxygen levels yet? Oxygen may help some too. These tests preferably should be done by a PH center.
But, it sounds like it could be COPD related. Once again, I am not a medical doctor and just going by reading what you describe. Often PH patients can have asthma and PH, so this even complicates things more. I hope that you do NOT have PH but I hope you get answers soon.
Anxiety does tend to creep in when we are experiencing issues breathing, but that does not mean that other issues are not going on. Continue to advocate for yourself and do not stop until you get answers.
Kudos on stopping smoking! We are here for you and want to know once you are updated.
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Thank you for the replies @carol-alexander and @jenc! I also should mention I am 26 years old so would COPD
still be something I could possibly have? I’ve read that it’s generally found in people during their 40s and over. I’ve had no testing done yet on anything. I know when I was in the ER my oxygen level was at 98% per the final report and from what was on the monitor. Hopefully the PFT can provide some answers as to what’s going on. It’s exhausting having to think about my breathing every day and feeling as if I have to take these deep breaths to feel satisfaction. I just don’t understand where this came from.I will be sure to update you both and in general once I receive some answers.
Thanks for the kudos! Quitting smoking has been so HARD! As someone who used to fight my grandmother as a young tike about smoking I can’t believe I started at 14 years old, let alone at all and for 12 years! Worst decision I ever made but the best was quitting. Hopefully not too little to late.
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Anthony I too have to constantly take breaths. Deep is better. I am 73 and have been a shallow breather all my life. I have been told to breath all the time, now I realize to get to 74 I have to breathe. Nose breathing is tough, I have to constantly be conscious to breathe with my nose. I often wonder what happens when I sleep, guess I am lucky to have sleep apnea and a c-pap. Not sure if it is good luck or not, COPD and PH suck. Al
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@alfredjohn Hi Al. That definitely is a difficult combination especially for those that are not being managed for their sleep apnea and not using the masks as needed. I haven’t been able to wear my bipap mask due to severe GI issues and reflux and WOW I have noticed a difference in my energy levels, ability to focus on what I’m doing, level of fatigue, etc. It really makes a difference. How long have you been using your cpap for? Do you think it’s a crucial part of your therapy and treatment?
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@aquigley93 Hi Anthony, First off I want to say “awesome job!” for quitting smoking. I know that it isn’t easy. My nana also was someone that I would frequently BEG to stop smoking. I remember learning about the dangers of smoking in health class when I was in elementary school and it made me so anxious to think about the effects happening to her. I hope that they are able to provide you with some more answers as to what may be going on. I know that the PFT testing will also give some type of explanation. I have severe obstructive breathing patterns that was caused by a compression of my trachea from a vessel, so it is not always obstruction because of smoking ! Just an FYI.
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@aquigley93 congratulations on quitting smoking! That is a HUGE step in the right direction, although I’m sure it hasn’t been an easy one. Keep up the good work!
I was wondering if your breathing actually worsened when you started symbicort? My son reached a point when asthma treatments actually flared up his PH symptoms worse. A comprehensive PFT should help reach that conclusion. Have you ever had a right heart cath? If not, that would be very beneficial in determining why your symptoms have worsened.
Definitely seek a PH specialist if you able to and please keep us updated. I hope you get answers soon!
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Brittany, I have been using a c-pap for 5 years, I think. I do not keep good records of all my visits to the Doctors. I thought they were supposed to do all that and I sign releases for them to get records but….. I do believe using the c-pap does help. At least it enables me to fallback to sleep when I wake up many times a night- 5-10 times. I have 100% usage of the unit. Most people I know do not use theirs. In 3 years my lungs did improve slightly but I kind of think it is the person who tests who makes the improvement. But the important thing is my lungs did not deteriorate more. Al
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@alfredjohn Hi Al, even just something not getting any worse is a huge relief when it comes to pulmonary testing. I know that feeling. Although it is a celebration when something looks better on paper, sometimes what actually looks better doesn’t necessarily feel any better. Not having the data to back up how I feel sometimes makes me a little concerned, but as long as nothing is getting worse I have to remind myself that’s a victory too!
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