Discussions By Condition: I cannot get a diagnosis.

Undiagnosed breathing problem

Posted In: I cannot get a diagnosis. 47 Replies
  • Posted By: Distressed1
  • February 21, 2007
  • 05:53 AM

Hi all,

I have been having a lot of discomfort with my breathing, feeling breathless/like its hard to breath or something along those lines...difficult to describe.

Im 30 years old
Yes, I have been a light smoker (maybe 4-5/day) off and on for last say 8-10years....am now trying to quit...considering asking dr to prescribe brupropion to help as I am having difficulty with stopping....ironically probably because Im so distressed about my breathing.

I have had numerous spirometry's which are apparently fine
I have had a stress test where u run on a treadmill and they monitor breathing, heart etc...apparently my breathing did improve somewhat during recovery.....and apparently I managed to continue excercising just past the point where u are producing more co2 than you are intaking oxygen..which apparently is a good sign.

Oxygen saturation is 97-98%

I have even had a bronchoscopy

I have tried symbicort and ventolin with no result

I have had a methacholine challenge test which went fine...even the largest vial of the stuff didnt get a reaction

The problem seems to get more difficult throughout the day and is worse by evening.

I have tried valium and other medications for anxiety/stress....little to no result except u feel drugged and dont fight the sensation as much.

THis problem started about 1-2 weeks after I had a tonsillectomy about 14months ago

I have since also developed chronic rhinitis and have recently had a septoplasty to repair a deviated septum and had inferior turbinate reduction to try to reduce swelling in my nose.

3 weeks post op and im still struggling with my nose.

Yes, I have had, and do still have some post nasal drip.

on one occasion I tried using cough medicine that contains bromhexine and I feel this helps a little to make my chest feel clearer and breathe easier.

I have aslo been through a trial of prednisolone and at 50mg/day I did feel improved after several days

I also seem to crave caffeine and anything else that has a stimulant effect....seems to help a little.....which is unusual for me...I normally drink tea or decaff coffee

The Doctors insist there is no respiratory disease or asthma...but I still feel breathless most of the time....so that's not much help!

I'd appreciate any thoughts or advice as after 14 months of being told I'm fine and jhust dealing with this with little or no relief it is becoming quite distressing for me.


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47 Replies:

  • although breathing difficulty can mean many different things, I don't want to scare you or lead you in the wrong direction, but I have been reading a lot on different symptoms for different diseases trying to diagnose problems that I have been having. But I had come across information that implied that it could be possible that heart failure can cause difficulty breathing. I don't want to scare you, but you should definitely quit smoking, which is hard for me too as a safety precaution and maybe see a good cardiologist. Some even say if you're experience problems breathing, that you should go directly to the ER for immediate examination. Do more research and ask questions as often as you can. See as many doctors as you have to until you are satisfied with someone that really sounds like they know what their talking about. Good luck and God be with you.
    Anonymous 42,789 Replies
    • February 21, 2007
    • 09:18 AM
    • 0
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  • Not sure if I can help you but...I also have been having a lot of sinus problems and have gone to the ENT countless times. My doctor is against surgery of the nose because a lot of times it does more damage than good. You said you had surgery on your turbinates, well that could be the problem. Look up "Empty Nose Syndrome" Your turbinates direct airflow and when messed with can produce a feeling of not being able to breathe, although you really can. Instead of having a direct strong flow of air, you just get a big burst that is not so directed, so it seems as though not enough air is getting into the lungs. There has been some research on how to repair it and there may be treatment for you. I don't think you have a major problem, I think it may be your turbinates and anxiety, but then again I am not a doctor. Let me know if i helped any.
    smb5575 10 Replies
    • February 21, 2007
    • 02:37 PM
    • 0
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  • Hi,I've read all about Empty Nose Syndrome...however this problem existed prior to the turbinate reduction anyway.....Also, A) my nose is actually still blocked B) I only had a slight reduction...not the removal which causes ENSI am fairly confident that over the next few weeks or months my nose will improve.I have been given a decongestant spray and steroid spray to reduce the swelling at the moment and most of the time my nose is much clearer than it ever was....I have noticed that I seem to get more acute moments that are like my chest 'locks up' almost...but as I have said in my first post the doctors don't beleive it is vocal chord dysfunction, asthma or bronchospasm.I am wondering is this is being misdiagnosed to be honest...but testing doesnt confirm anything....so yeh...I'm still lost for ideas....
    Anonymous 42,789 Replies
    • February 21, 2007
    • 10:42 PM
    • 0
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  • bump.........still hoping someone may know whats going on here.
    Distressed1 22 Replies
    • February 22, 2007
    • 06:06 AM
    • 0
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  • As follow up information,I had another spirometry yesterday and it showed some mild restriction....my FVC count was about 79% of predicted....other wise all other numbers were good.....could the restriction be due to a slight lack of effort on my part doing the test or something?? Is the lowered FVC something to be seriously concerned about?FEV1/FVC was still 85-89% PEF was like 679-699etc etcThe doctor at the medical centre said the numbers were fine.....but I certainly feel as though my breathing is restricted.suggestions? ideas?
    Distressed1 22 Replies
    • February 24, 2007
    • 07:37 AM
    • 0
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  • Hi all,After another Dr's appointment....spirometry still shows normal however my breathing is still difficult almost all the time!!I have also just had a CT scan which shows no abnormality....the respiratory physician has recommended me to a cardiologist just to make sure but does not beleive there is likely to be a problem in that area??Pulse oximetry is still between 97% and 99% depending on what time of the day it has been taken.Can post nasal drip cause this kind of tightness in my throat and chest???Is there any kind of muscular problem that could be causing this???Still at a total loss as to what to do here.....
    Distressed1 22 Replies
    • February 28, 2007
    • 01:47 AM
    • 0
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  • bump....Still hoping someone may read this and know whats going on here.
    Distressed1 22 Replies Flag this Response
  • Yes, post nasal drip CAN cause those symptoms; my pulmonologist tells me that all the time. When mine acts up, he gives me Rhinocort. A couple of weeks of that and the symptoms go away (and I stop needing to use my inhaler when my peak flows are reading normal).Yes, you REALLY need to stop smoking. It can seriously interfere with your healing, especially from nasal surgery.Have you had allergy tests done? If not, it may help you figure out what's causing the post nasal drip (without an active infection, the drip is most likely due to an allergy). The scratch tests are a pain, but they're the most accurate.Good luck with it.
    Anonymous 42,789 Replies Flag this Response
  • Post nasal drip, allergies, and bronchitis can all mimick the symptoms of asthma (and to make things more complicated actually cause asthma!). There is a high probability that you may have all three. Fatigue, stress, weather conditions (cold and dry air), may trigger these symptoms. You may feel a combination of mild symptoms that are persistent yet not noticeable enough (individually) for a clear diagnosis. Besides the obvious, stop smoking, get plenty of rest, eat healthy...You may want to try tackling one symptom at a time, and see which of your symptom(s) is(are) the most persistent. Try keeping a 'symptom log', chances are that with every doctor's visit, you will be able to clearly define symptoms, triggers.Along with such log, try keeping a 'medication diary' of how such medication has or has not helped.One of the reasons it is so difficult to diagnose breathing disorders is that symptoms can change on a daily basis depending on a number of things...
    Anonymous 42,789 Replies Flag this Response
  • Ok,I have had additional followup tests including more spirometries, methcholine challenge, CT scan, EKG, cardiac stress test and various blood tests for possible cardiac stuff....I have even taken myself off to a psychiatrist and asked if it could be panic attack/anxiety etc which apparently it is not.The pulmonary drs, and cardiac dr have all basically said there is nothing wrong with me....So where the ***l do I go from here....I cant even think of who to see or what to do.I havent smoked for over a month now and whilst it has helped with my sport performance its done absolutely zero to help fix this problem. I am not sure I would necessarily describe it as breathless...more like a tightness....like I feel like Im getting something like bronchitis but I just dont....i can breathe its just an odd sensation...plus i feel tense and crappy like you do when you arent well.Sudafed does seem to help a little...but im not too keen about taking itVentolin etc make no differenceI am continuing to use a sinse rinse several times a day and nasonex twice a day...but my nose is still stuffy/swollen/runny to varying degrees....Interestingly humidity seems to be the one thing that really makes it all worseAny suggestions?....feel like I've tried almost everything there is.....
    Distressed1 22 Replies Flag this Response
  • have you been tested for COPD?
    Anonymous 42,789 Replies Flag this Response
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  • have you been tested for COPD?I have had numertopus spirometries, excercise stress tests, ct scan.Oxygen sats are a good 98-99%I assume that copd would show on the spirometry....plus i assume several pulmonary specialists would not miss something like that.My FEV1/FVC ratio is over 80% of predicated...usually somewhere between 81-86% sometimes higherSo unless there is a test that I have not had ...I would assume the simple answer is yes.
    Anonymous 42,789 Replies Flag this Response
  • Sometimes GERD can create the symptoms you describe. You should discuss the possibility of reflux with you MD.
    Anonymous 42,789 Replies Flag this Response
  • Yes,I definitely have GERD.....as mentioned in the first post. I am on medication for it twice daily, it seems to be under control and the Drs don't believe it is causing my breathing difficulties....is there any way to rule it out/check that??Still no idea what to do here....the drs have basically said there is nothing wrong with me...but I certainly don't feel ok
    Distressed1 22 Replies Flag this Response
  • you have two things wrong : adrenal insufficiency and post-anesthesia toxicity. for the adrenal, you need to take adrenal gland extract with high dose pantothenic acid and b complex, then post anesthesia you take Arnica homeopathic 30c once a day for 2 weeks and reduced glutithione 3000 mg twice a day for a month.www.fortifyhealth.com
    drbeilin 8 Replies Flag this Response
  • I get that all the time, and all my tests were clear.For me, it all comes down to anxiety, and overthinking about my breathing! Try a destraction. If the breathing problem goes away when destracted, you know its not 'real'.
    kicker 7 Replies Flag this Response
  • I definitely have GERD.....as mentioned in the first post. I am on medication for it twice daily, it seems to be under control and the Drs don't believe it is causing my breathing difficulties....is there any way to rule it out/check that?? Okay, drug side effects and drug interactions are the LAST things a doctor will consider, and often it is a direct cause of medical problems -especially when nothing else has been found. Please go to www.drugs.com and type in your medications to check for all the side effects. If you are taking more than one med, click on the drug interactions checker and type in all the meds you are taking (including steroid sprays and otc meds). This website is an invaluable resource and I use it whenever I have a patient who is taking more than 3 meds. I can't stress this enough - MOST DOCTORS DON'T CHECK FOR THIS! Please do this and post if you find any side effects or interactions that seem to fit your unexplained symptoms. You are right in that this should be ruled out. Best wishesDOM
    acuann 3,080 Replies Flag this Response
  • I'll look into drug reactions....but the only drug I have been taking consistently is 20mg Pariet morning and night for reflux. I do sometimes take a sudafed tablet if I have a cold and I have something important to go to like a formal function...but thats a rare occassion and certainly wouldnt be causing this chronic problem. I have been given seretide 50/25 by my local doctor in an attempt to help ease my symptoms and I do seem to feel somewhat better but I am uncertain whether this is genuinely improving my breathing or its a placebo effect. I have considered anxiety, and still wonder if that could be playing a role. Certainly I feel more anxious the more acute my breathing feels.... but I still beleive that any anxiety I am experiencing is a reaction to the problem as taking a relaxant like valium and just trying to distract myself does not stop the problem.
    Distressed1 22 Replies Flag this Response
  • I would suggest that you see a pulmonary specializst, because they specialize in most breathing problems, and have some of the most accurate tests that you can have done. They are pretty good with their diagnosis. Godd Luck
    Anonymous 42,789 Replies Flag this Response
  • I have already seen two pulmonary specialists, both say they can't see anything wrong...thats the problem
    Distressed1 22 Replies Flag this Response
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