There is hope, my story
I can remember having "breathing issues" since before I was 10. I don't have the best memory and can't remember if I told my parents or not but I can remember asking my father for money and going to the drug store around the corner to buy "Primatene mist" in hopes that it would help but hiding it from my parents. I remember the symptoms would come and go and don't remember any major "issues" until I was in my teens. I was never good at sports because I allways seemed short of breath and figured I was probably out of shape. I should mention that I grew up in the Virgin Islands with lots of fresh air and was in pretty decent shape so being overweight wasn't an issue. From my late teens it seems like my symptons would show up ever year of two, last a few weeks to a few months and then be gone again. This was anoying but not that hard to deal with. I moved to the states in my late teens and can remember my symptoms getting worse in my mid 20's when I was living in California. Instead of the symptoms coming and going they started suddenly and were 10 times worse then they were before. This started my dealing with any medical personal.
Like the rest of you I was unable to "complete" a breath. I never felt like I was getting enough air and was only able to take a deep breath every 10-15 breaths and then it was like ambroisia. I felt like I was close to passing out much of the time when it got real bad. Several time in the same week it scared me so much I finally went to the ER. The ER staff basicly took one look at me, told me I was having an asthma attack and gave me nebulizer treatments. The treatments really did nothing but the ER gave me a inhaler and sent me home. This happened several times over about a month and again the ER did the same exact thing. My breathing issue this time lasted probably close to six months when the symptoms left as quickly as they came. I hoped that they wouldn't return and went on with my life.
About this time I met my husband, got married and proceeded to have 3 children between the ages of 26 and 33. During this time the symptoms continued to come and go and while I tried to talk to my doctors about them everyone of them blew it off as either asthma or anxiety without ever doing any for of testing. I want to point out that anxiety wasn't remotly a possibility, I am one of those ones that don't panic until after the issue. I am allways the "rock" when everyone else is falling apart. About that time I decided that it haden't killed me yet so it wasn't likely to so I was just going to learn to live with it when I had the symptoms.
I divorced shortly after my last child was born. It was an amicable divorce and we still get along to this day with no animosity at all. It was about six years ago that the symptoms came and have never left. They would improve slightly but they never completly went away. About a year ago they started getting even worse. I am now unable to doing much physical activity without being completly out of breath. I went to the primary doctor I had been seeing to see it we could finally see what was causing this. He bluntly told me there was nothing wrong with me and then started telling me it was anxiety. He did run some blood tests which as far as I know showed nothing except that my thyroid levels were still out of wack. About three years ago I insisted he check my thyroid and low and behold it was above normal and put me on synthroid. At that point I had had it, I never want to see that idiot again. I was able to get a referal through another doctor that I was seeing for the lumps that were found in my breasts that turned out were benign as my primary would not refer me.
I managed to find a Pulmanologist near me and made an appointment. At my first appointment I knew this was going to be the turing point. This doctor actually sat and "talked" to me for over an hour, asking me all kinds of questions, his physical exam lasted less then 5 minutes. He then told me he wanted to run a bunch of tests including various blood tests, xrays, an upper GI, an echocardiogram and 2-3 different breathing tests. What these test show was VERY enlightening. The upper GI showed I do have a hiadal hernia and GERD, the xrays I'm unsure of but the breathing tests show some issues with I believe the large airways but I could be wrong there. We decided (the doc & I) that since I had been deeling with this for so long that we were going to take our time and make sure this was done right. At that point he put me on Pepcid AC to help with the reflux and wanted me back within the month. At the next visit I told him that the pepcid had made a bit of a difference about a week after I started it but it only made a difference when I wasn't exerting myself and about that time I came down with a very nasty cold with major congestion and my symptoms were back full force. He then changed the Pepcid to Prilosec and asked me to try an Albuterol inhaler to see if there was any difference. The inhaler has made absolutly no difference. He (the doc) also ordered a few more tests including another breathing test, more blood test and another set of chest xrays. I go back to see the doctor the end of this month and will hopefully discuss the hernia and GERD in more depth. I did find out that the GERD can definatly cause breathing problems. Basicly the stomach acids get into the lungs and creates issues which is where the antacids come in I think. I have been on the prilosec for almost two weeks now with minor improvements as long as I am not exerting myself.
Last week for the first time in my life I have meet someone else with the same "issues". Her problems were a bit worse then mine in that the stomach acids were even causing tooth decay and that she had a constant cough. She had a surgery a few years ago called "Nissen Fundalplication" which wraps the top of the stomach around the esophagus so that the acids can't get back into the esophagus. She said the surgery made a huge difference including her breathing. I hope to talk to her again soon and have passed this site onto her.
I am planning on posting regular updates here in hopes of helping others as I know how helpless and alone everyone here feels. I am new to blogging so please forgive how primitive this is, maybe I can do better in the future and if anyone has ideas on it I would be gratefull.
Casi
posted by casi1001 @ 5:50 PM
4 Comments
4 Comments:
This is really interesting to hear about. I experience air hunger on and off, but not to the same extent as you. I can exercise and not feel short of breath.
When I was younger I went through a phase of having mild asthma but the major problem was not the asthma itself but air hunger. I was put on inhalers for a while but they didn't help. I went to the emergency room one time because I felt as if I were dying and they just told me it was a panic attack and sent me home with some sedative pills. The thing I always thought was weird about it was that the breathing is what caused me to panic in the first place. I often had people accusing me of being tired or bored because I yawned and sighed a lot. I never exercised on a regular basis growing up though and when my 'panic attacks'/air hunger was at its worst I took up running and it helped SO MUCH. I notice the air hunger is worse if I do not run for a while, I think the intense cardio really helps (for me anyway). I also notice it gets a lot worse when I eat junk foods. I have been looking into adrenal fatigue as a possible cause for myself.
Thanks for sharing your story. Air hunger is totally a real thing, I have never had a 'panic attack' other than what the doctor tried to tell me was one.
Hi Casi,
I just want to start about by saying, that both your story and that off the individual who commented previously resonate and speak so directly to my experience with "Air Hunger". I have had asthma since I was a child. However, it was only seasonal and the systems were very typical: wheezing, coughing (easy to remedy with an albutoral inhaler).
However, about a year ago I experienced exactly what you described. The inability to complete a breath. 15 breaths feeling totally unsatisfactory followed by one complete breath that feels like nirvana. Then the cycle repeats. I'm constantly yawning and have trouble being outgoing. I still exercise, ironically that is one of the only things that helps. My inhalers no longer work. I thought this feeling was the result of my asthma, but after visiting my primary care doc and a pulminologist they told me my breathing was fine and immediately brushed my symptoms off as anxiety. I'm left honestly with no answers and very little as far as a solution.
I've done some research, and from what I understand air hunger is also known as dyspnea, which is basically a "mismatch" in the brain between the receptors that control your breathing and the receptors that tell your brain what your CO2 levels are. If your CO2 levels drop, it means you are getting a lot of O2 and should not have to breath heavily. For apparently psychological reasons, our brains do not pick up on this CO2 drop and continue to breathe as if we are compensating for high CO2 levels. This is why if you were to get tested for blood oxygen levels they would most likely test through the roof. You are technically getting the air you need, but the feeling doesn't go away.
There are things I have done to fight the "air hunger". I used to smoke Marijuana and no longer do. I also find that stimulants lead to a heightened feeling of air hunger. Lastly, I try to control my breathing. Although you feel the need to breath heavily, if you take very small breaths intentionally, much like a normal person would during their daily life, it should naturally raise your CO2 levels jumpstarting your respiratory system. That way you actually feel like you are getting the air you need. Breathing out of a paper bag might help as well. Whatever you can do to raise those CO2 levels in your blood. My gut feeling is that the unsatisfactory feeling from our deep breaths comes from the fact that our body technically doesn't need them, we already have low levels of CO2. This has somewhat worked for me.
Anyway, that's my experience with "air hunger" and the thoughts I have accumulated thus far. Thank you so much for sharing because living with air hunger is not easy. I have found most people don't understand and it's a huge relief to know that there are other people out there. If any solution works for you please share it and I will be sure to do the same.
Also, one question. Before taking antacids were you experiencing acid reflux or was it just something the doctor recommended for your breathing?
Thank you again!
Have you been checked for vocal cord dysfunction? My daughter had the same problem. It mimics asthma and many docs don't know about it. Also...acid reflux can make vocal cord dysfunction worse. In vocal cord dysfunction the vocal cords close part way constructing your airway. Inhalers and medication doesn't help, but speech therapy does! Good luck!
Ps...it is an ear nose and throat doctor who treats vcd. You need to do find a doc who is experienced in vcd. My daughter's symptoms have improved dramatically.
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