Firstly, thanks in advance for anyone compassionate enough to read my story & especially offer any suggestions or advice. I've tried to be as thorough as possible. 8 months ago, my life basically ended, i'm running out of hope. Anybody that is able to, please help.
I'm male. 37 years old. 6 feet 2 inches. 190 lbs. This condition started in the first week of March. It came upon me while I was on the end of my second dose of Amoxicillin for an apparent sinus infection. A severe shortness of breath, especially a seemingly inability to exhale came on me suddenly, spontaneously, out of nowhere....to the point that I raced straight to the ER because I thought I was dying. I have never had ANY breathing troubles prior to this. Since this day, everything changed.
SO, my main symptom, is severe shortness of breath with a deep, damp, cough feeling in the center of my chest cavity that's been present since the beginning of this, that's never gone away. The center of my chest always feels like it has a slightly "caved in" feeling.
Any amount of significant activity increases these symptoms, along with chest pains, heart skips, labored feeling lungs and upper diaphragm....like indescribable feelings of discombobulation, like everything's getting out of wack and i'm going to die of a heart attack or something. Increased activity also increases a raw, painful feeling in the center of my chest cavity...the same place where the "dampness" is. It's during these times I also cough unusually, making a very deep, weird noise coming from a very deep place.
When I lay down at night, I can hear a weird constriction, whistling upon exhalation before it shuts off....feels like a blockage not letting me exhale very much.
I've been to the ER 8 times since this condition began due to severity of my symptoms. Every time i've been to the ER, my oxygen level is stable. To be clear, I haven't been able to work or do anything since this condition begat me and i am primarily immobile and have to stay inside most all the time. The last apartment I was living in up until 2.5 months ago, was very damp/musty air quality with dirty carpeting and visable mold in the bathroom...this may or may not be a factor i don't know. Consequentially, I've lost my jobs and my life really. I'm short of breath 24/7 no matter if i'm doing anything or not.
I've had an Echocardiogram which I was told had nothing abnormal about my heart.
I've had an Endoscopy, which revealed a small, recent ulcer and some gastritis, but nothing the GI specialist said would contribute to my symptoms.
I've had Pulmonary Function Tests done which revealed no evidence of obstruction of restriction. HOWEVER, residual volume was elevated to indicate an element of AIR TRAPPING. This residual volume was at 151% ...normal volume is 100%.
I had a sputum test positive for "colonies of rare candidas albicans" to which the doctors didn't seem to think much of...
I've had a CT scan which didn't reveal anything. I've also had a CAT scan which the doctors said didn't reveal anything.
All my blood work, cell counts, blood pressure etc appear to be optimal.
I've had a Methocholine Challenge test which revealed a modest 18% improvement, which I am told is pretty insignificant. I'm using a Pro Air inhaler, which I don't physically notice any improvement, but I use it just the same.
I was thinking the next course of action might be a Bronchoscopy or at least an Thoracic Ultrasound of my lungs/chest, both of which my current Pulmonary Doctor refuses to assign. My current Pulmonary doc has no plan or idea what to do, yet won't authorize any further action.
ANY advice, suggestions etc...would be highly appreciated. I'm at the end of my rope here. I don't know what else to do, everyday is an incredible struggle for me and no one i'm dealing with seems to know what to do. I'm losing hope. I've tried a variety of herbs for inflammation, lung/cardio support to little avail.
So thank you for taking the time to read this. I've lost all hope and don't see much of a reason to live anymore. I want to live, but living in this 24/7 suffering for this long...I can't do this anymore.
Also, thanks in advance for your time & any advice any of you may be able to provide.
I'm having similar problems with wheezing when I exhale even though I've taken 7 days of prednisone, dulera/symbicort, singulair, albuterol through a nebulizer. have you tried these meds and nebulizer? they don't seem to help the constriction in my chest- I even got a sulamedrol injection and it didn't seem to really help
I have mitral valve prolapse and wonder if it's related
Hey there....I've taken prednisone twice. Once when this first started for 6 days at 40 mgs....it really helped, until the second I ran out, all the crazy breathlessness came back with a vengence.
The second time i tried I was started at 20mgs.....it didn't do anything.
I've been on and off nearly every steroid inhaler to very little avail.
If I has to guess with you I would strongly suspect your mitral valve is related. I don't think asthma is my core issue.....the last doc I saw said he heard some "trapped gunk in there somewhere"
You are facing a lot of problems. Try to do this breathing technique for about one minute. Let me know whether you can do it, and how you feel when you do it.
Build up your timing gradually.If you feel tired or dizzy, stop and resume after one minute.
Kapalbhati pranayam -(Do it before eating) Push air forcefully out through the nose about once per second. Stomach will itself go in(contract in). The breathing in(through the nose) will happen automatically. Establish a rhythm and do for 20 to 30 minutes twice a day. Children under 15 years – do 5 to 10 minutes twice a day.
Not for pregnant women. Seriously ill people do it gently.
November 5 ,2011
I find that I still wheeze after 30mg of prednisone and sulamedrol injection- prednisone may damage the liver so you need to get a blood test, AST/ALT levels and more maybe to check your liver and kidneys; I wouldn't stay long term on prednisone
You also must taper the prednisone dose so you don't damage your adrenals, maybe by 5mg a day or 10mg, I think I may do 5mg this time
I am suffocating in my sleep, did you get a sleep test for sleep apnea?
I tried licorice root and it didn't do anything and it can cause heart problems so stay away from that
This illness, whatever i'm up against, has taken away my life. I can't walk, hardly talk, let alone leave the house. It hit me literally overnight.
SO, I'm doing a 10-14 day water fast. I have nothing to lose, i've tried everything else. If I die doing it, so be it...death doesn't seem so bad these days anyway.
Have you looked into systemic oral enzymes? They may help your problem, which could be caused, or exacerbated by internal inflammation. Google "sytemic oral enzymes" or "enzyme therapy" to find books about this subject, as well as places you can purchase them, either in your local health food store, or on-line. Good luck. I hope you find the solution to alleviate your condition.
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