Chronic out of breath

[Babs1176]

1 1/2 years ago I began with a slow onset of breathlessness. My walking buddies noticed it first.
I am 54 y/o fe Non smoker(execpt for a year in college 30+ yrs ago) 5'4 145 pounds. exercise 2 times a week walk 1-3 times a week although recently not as fast or as far.I am not diabetic.

Mom died of COPD

All bloodwork has been fine.

PFTs have been WNL - methocholine challenge was VERY reactive at the .01 %. On advair hfa 230/61. Diagnosis is hyper reactive airway. I have never been diagnosed with asthma before this.(adult onset)

CT of chest show small 3mm nodule that has not changed on 3 rpt CTs over last year.Thought to be benign in nature. CT also shower small emphyzemic changes no chng over last year.

Had GI workup( on PPIs 2x a day + zantac at hs) Endoscopy normal with some small irritation - 24 hr impedence showed good acid control with non acid reflux at times of breathlessness.Manometry showed mild nutcracker esophagus. baclofen 10mg 3x/day. verapamil for tachycardia

ENT eval was neg for VCD

have constant discomfort behind sternum.Sort of a burning - but not like heartburn. Mild discomfort  progressed to severe pain in 6 episodes. Nothing helped. Levsin has not helped
The breathlessness is constant. Exercise does not make it worse...although the breathlessness  make exersize harder.

do not feel like it is an anxiety related issue.am uncomfortable from the time I wake up until the time I go to bed- pain worse in eve.By nite burning is so uncomfortable that I breath very shallow-ly. used to be able to *hide*  noisy breathing. apparently not so successful as have had patients(I am dental hygienist) comment on it more so recently

My family feels the breathlessness is increasing in intensity.The noisy breathing usually increases as I am concentrating on something intensly - as I cannot concentrate on making the breathing quieter.
I am running out of options and am getting very discouraged. suggestions?

[NanniShelley]

A related discussion, Loss of Voice, Short of Breath, tongue burning, tinnitus, fatigue was started.

[NanniShelley]

A related discussion, Loss of Voice, Short of Breath, tongue burning, tinnitus, fatigue was started.

[Babs1176]

Several weeks ago the GI doc started me on low dose elavil - a tricyclic antidepressant.

He's thinking I have a hypersensitivity disorder. He said its only in the last few years the medical communtiy has regarded hypersensitivity disorder as a *real* medical condition as opposed to a psychiatric condition. He feels that in about 5 years there will be more definitive treatments for it as more and more research and testing is being done due to its shift to a *real* disorder now.

Started me off at 25 mg - for about 3 weeks then up to 50 mg. It was very gradual- but after a few days on the 50 I started noticing short periods of time with no burning - no uncomfortable breathing ...then one day last week I went nearly all day feeling no burning in the chest- it was SO refreshing to *forget* about my breathing for even short periods of time. He says we can go up to 100 before it gets intopsychiatric doses.

Its not ALL better yet - but the operative word in my mind is *YET* - I am so encouraged to even have short period of comfortable breathing- and to even include the word *yet* in my vocabulary.

So the nexium is taking care of the acid reflux - the baclofen is taking care of the *non acid reflux* and the elavil is taking care of the hypersensitive trachea. Since starting the Elavil I have had NO MORE of the terrible *attacks* that had been coming 2-3 times a week.(Years ago I was on elavil to treat migraines - another symptom in the hypersensitivity sydrome list)

Pulmonologist is decreasing the advair slowly -

Perhaps years of acid and non-acid reflux ( weird since I have NEVER had heartburn or other related symptoms) had been irritating my trachea and that triggered the hypersensitive airway (VERY positive methocholine challenge test results)

Wanted to post that in case its something anyone would like to bring up to their docs

Barb

[Babs1176]

Sorry bout that last entry I hit the wrong key too soon..
To the Dr...
I have had the alpha-1 antitrypsin deficiency blood test - and it was negative.

When this all first started I had an echo - negative

I have had RAST testing - all negative - am allergic to NOTHING!

While I have had the cardiolite stress test andit was WNL I have not had the graded treadmill exercise study - and frankly - would be embarassed to suggest - because I am starting to think this is all in my head.

ALL of my last PFT tests were WAY above normal...like in the 110-120 % of expected...so I should be feeling great eh?

I am really convinced this is NOT an anxiety issue - as I have it 24/7. Recently it has been waking me up at night.I wake up- gasp a big deep breath and go right back to sleep.

The ONLY test so far was the methocholine challenge...and that was a SEVERE positive.

The GI Doc put me on Baclofen - which has helped the tremors I was having in my jaw - it would *vibrate* like I was cold - but I wasn't cold. I do have GERD that is associated with the increased breathlessness as per the 24 hr impedence test. Its supposed to help the sphincter behave normally. But so far(3 weeks) no improvement.
This week he added elavil - small dose - and has said perhaps what I have is *hypersensitivity syndrome*(aka *CRAZY LADY*?)

HAve begun to have tingling in tongue - and I think it must be related to the hyperventolation possibility - but even when I take the time to be sure to *belly  breathe* slowly in and out - the tingling stays.ITs there when I wake up and with me all day.

We'll wait and see, maybe the elavil will do the trick. Years ago I suffered terrific migraines and it was the only thing that finally helped them.

I am NOT a hypochondriac...I just want to FEEL GOOD!!! I have so much I want to do....Am I depressed - hell yes - but its due to feeling so crappy for so long and thinking there will be no answer. Think I will just stop going to Drs...

Thanks for all your kind posts.

Barb

[National Jewish Health]

Here are a couple of thoughts.  Given the results of extensive testing, it is unlikely, but not impossible, that this degree of shortness of breath is caused by occult emphysema or interstitial lung disease (ILD).  However, COPD due to alpha-1 antitrypsin deficiency can present with significant shortness of breath, borderline PFTs and CT findings.  That should be checked.  Please read our alpha-1 antitrypsin deficiency information at http://www.nationaljewish.org/disease-info/diseases/copd/about/alpha1-antitrypsin.aspx to learn more.

But the methacholine challenge cannot be ignored and this could be asthma.  While the evaluation for vocal cord dysfunction (VCD) was said to be normal, this condition can fluctuate and it would be important to observe the inspiratory loop on the flow-volume loop of the PFTs.

More worrisome would be occult, recurrent pulmonary emboli (PE), which should be ruled out, or primary pulmonary hypertension or some type of cardiomyopathy.  An echocardiogram (ECHO) should be done, as cardiomyopathy can occur with a normal or near-normal heart size.

Perhaps the first step should be a graded treadmill exercise study with measurement of pulmonary function including arterial blood gases (ABGs) and cardiac performance.  That could lead to a suspected diagnosis, to be confirmed by the studies mentioned in the preceding paragraphs.

[snowtree]

On January 1, 2007 at 12:01 a.m. I started breathing with the biggest pain on my ribs under my breast.  Well lasted about a week, imagine that every time that you breath you have pain, horrible.  Well, like about 4 months ago, I had a small arguement with my 14 year old twin daughter and all of a sudden I couldn't breath, I couldn't go up and down (breath in or out) I ran outside trying to catch my breath, wanting to die, I cried, got mad and asked God to take me.  Well, went away after a while, but do to the fact that I am hyper I hyperventilate all the time.  Wouldn't you with for children, one in Iraq, the other one with court problems and 14 year old twins, I think you will.  I went to emergency and they did a bunch of tests, all came back excellent, I told the emergency nurse that I refused to accept that, that to please give me something so I could breath, in other words I wanted to be medicated forever, you know.  Now I got other problems to worry about, I'm going on monday for a breast biopsy, due to a solid mass in left breast, not too worried, because I had the same thing only a little smaller back in 2003 (benign, thank God!!), but can you believe that I learned how to deal with my breathlessness, I don't panic anymore, when it happens I say to myself (Christ is healing me right now), it works all the time, but is feels really bad when it happens.  God Bless all of you.

[Sunny602]

Hmm. chronic hyperventilation, that could be it. You said your PFT's were normal in every way, including inspiratory and expiratory pressures (MIP and MEP)? If they are off, then muscle weakness or neuro problems are considered. I am a good example of that. About 5 years ago, I too had severe breathlessness, any exertion made me pant. The docs thought asthma at the time, I do have severe asthma and they treated me as such with lots of steriods..the works. After continued decline, the doc finally sent me for PFT's. My FEV and FVC were normal, I think they were sitting at 80% predicted at the time, but what concerned the doctor were my MIP and MEP also MVV (where they make you breath in and out as fast as you can for a specified time, measuring your volumes). They were low, very low so then they focused on my diaphragm. It was found that my diaphragm was weakening and as time went on, my PFT's were getting worse, this time my FEV and FVC were also affected along with my ABG's..blood gases. I now am vented and trached...I don't mean to scare you, I am literally one in a million. It took a long time for the docs to figure this out for me. I am not saying that this is what is wrong with you, it is just an example of what can cause breathlessness. Let me ask you, is your breathlessness worse when you lie completely flat? Again, I hope that answers are found soon for you...you too AJ, sounds like you are in the same boat as Babs. Sunny

[AJWS6]

Hi Babs,
I am going through the same thing you are experiencing, and it's frustrating.  Hope we both can get some help in resolving breathing issues.  I've had every test done in the medical field, including heart cath, all returned normal.  I have been a smoker for 30 years, which surprises me, all my test results were normal including PFT, I blew 97% and 94% flow.  My doctor is baffled.  I've tried anxiety meds, which made my breathing symptoms worse.  Don't give up, hopefully we find freedom in breathing.  
AJ  

[Babs1176]

Yes had an echo...nothing out of the ordinary that they told me anyhow. ;O(
Just ran across something interesting...could this be a chronic hyperventilation? I seems to have all the major sympotoms - except I am unsure of the anxiety issue. Never had panic attackes...and don't feel anxious as I am seeing it described here. Of course I am dsicouraged wat this point - but don't feel what I would call anxiety.

Thanks for the response

Barb

[Sunny602]

You have certainly had quite a workup...have you had an echo by chance to check out your pulmonary artery pressures? I know that an echo isn't as accurate as a cardiac cath as far as determining your PA, but it gives the doc a ballpark estimate. Pulmonary HTN can cause breathlessness. I am not sure about the burning though...that is puzzling because your tests have shown minor problems in that area. Anyhow, I hope that you find an answer that explains this..it must be frightening to you. You are in my thoughts..Sunny

[Babs1176]

Also had full cardio check up - cardiolite stress test...all WNL