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Breathing issues?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by bspg, Sep 8, 2017.

  1. bspg

    bspg Plant Queen

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    In 2016, I started feeling like I was always breathing through a straw so I talked to my doctor about it. She diagnosed me with asthma and gave me inhalers to use everyday (she was a huge fan of treating empirically). A few weeks after starting the inhalers, I had a pulmonary function test and it was totally normal. Good, even. The technician said I could still have asthma, but maybe I was just being well managed by the inhalers.

    Unfortunately due to my ME/CFS, I was never able to perform any other testing to confirm the diagnosis, but I just kept using the inhalers because they were working.

    Fast forward to 2017 and I started slacking on using the inhalers (I struggle to take meds daily, no matter how long I've been doing it). Normally this would cause my symptoms to return but for some reason, they didn't. Not being one to take meds I don't need, I stopped using them and for the last 6 months, my breathing has been fine 90% of the time.

    I get some days, however, where my airways (especially inside my nose) feel really swollen again. No mucus, no sneezing, no coughing or wheezing - just the feeling that my airways are too small to pass air through quickly. Like I'm breathing through a straw.

    It seems to come out of the blue and I don't know what's causing it. Today is one of those days and it's so bad that I've used my albuterol inhaler, steroid inhaler, and steroid nose spray and I'm still having issues.

    I was recently diagnosed with MCAS (based on other symptoms), and am taking twice daily ketotifen and claritin. I'm not 100% convinced I have MCAS though, as my MCAS symptoms are pretty vague (nausea, brain fog, itching, fatigue) and could be be attributed to many things. Also, I don't have issues commonly seen with MCAS, like food issues or hives or MCS.

    So my question is: wth is going on with my breathing? how do I figure this out? Do I have asthma? Is this MCAS? Is this just an effect of recent wildfire smoke even though I live inside with air filters?

    How do I figure out what's causing this?
     
    Last edited: Sep 8, 2017
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  2. bspg

    bspg Plant Queen

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    One thing that's different about today is that I'm also having random blood pressure and pulse rate variations. I don't know if they're a cause or effect of the breathing stuff though.

    Are blood pressure and HR changes symptoms of MCAS?
     
  3. Cheesus

    Cheesus Senior Member

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    Everything you describe are symptoms of ME.

    I regularly get air hunger (AKA dyspnea). I wouldn't have described it as feeling like I am breathing through a straw. It simply feels like I am just not getting enough oxygen into my body. No matter how I breath, the air just isn't enough.

    Blood pressure and heart rate symptoms are also absolutely symptoms of ME. Most people experience low blood pressure, but some people also get high blood pressure. It is all part of autonomic dysfunction, which appears to be at the core of the illness for most people.
     
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  4. Skycloud

    Skycloud Senior Member

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    Hi @bspg, I don't know what is going on with you I'm afraid.
    But this might be helpful...

    If it's asthma and rhinitis, your meds are appropriate but you wouldn't get immediate relief from the steroid spray and steroid inhaler.

    2 things happen in asthma and rhinitis - constriction and inflammation of airways. Constriction (or bronchospasm) can come on quickly but inflammation is more chronic. You can adapt to a degree of inflammation and not realise you have it.

    Albuterol is a bronchodilator and works by dilating or relaxing airways; it acts quickly, bringing some or total relief from bronchospasm. It can cause tachycardia and arrhythmia side effects. Did you HR and BP changes happen before or after the albuterol?

    Steroid inhalers and sprays take time, a week or more, to be fully effective and they will only be effective if used daily. They have an anti-inflammatory effect. Simply put, where the airways are narrowed/swollen by inflammation continuous use of steroids reduce and maintain the airways in a smooth open state.

    Smoke of course can trigger asthma, as can other things, by themselves or in combination. It can come on suddenly.

    Apologies if you know all that already

    I'm asthmatic and I have a peak airflow monitor with which I can measure and monitor my own airflow - did your doctor discuss this with you? It's really useful.
    https://www.amazon.com/s/ref=nb_sb_ss_i_6_9?url=search-alias=aps&field-keywords=peak flow meter for asthma&sprefix=peak flow,aps,209&crid=2BRETJR8YNNP2


    Maybe it's ME as Cheesus says, it could be, but no one here can say really.

    It's not a good idea to stop or reduce asthma medication without discussing with your doctor first.

    I suggest go back to the doctor since you seem unsure about the diagnosis and in the meantime continue with the prescribed medication for longer to see if it helps.

    If you find yourself struggling to breathe you need immediate medical attention .

    More info about asthma diagnosis and management (sorry it's a UK site, don't know any US ones) -

    https://www.asthma.org.uk/advice/ (in the uk albuterol is called salbutamol, brand name ventolin)

    Hope this helps :)


    edit to add - forgot to say that I've had similar issue with my breathing at times that didn't fit with asthma, so again, could be ME
     
    Last edited: Sep 9, 2017
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  5. Thinktank

    Thinktank Senior Member

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    I'm really glad you started this thread because i'm having exactly the same problem. I'm determined to find a solution now that it's affecting my sleep.
    My symptoms are like you say a stuffed nose but without any mucous or visible inflammation. It's like breathing through a straw so i end up sleeping with my mouth open. I believe it's also contributing to sleep apnea because i often wake up as if i've not taken a breath for hours, feeling like i'm poisoned. It takes 2 hours of focused breathing to get rid of the poisoned state but i'll still be more fatigued than usual for the rest of the day.

    I've been diagnosed with asthma, allergic rhinitis and chronic bronchitis.
    There's no phlegm, mucous, coughing or whatever. Just swelling and dryness.

    Medicines i've tried are symbicort (formetrol + budesonide) and avamys (fluticasonfuroaat).
    The symbicort helps sometimes but no longer than 4 hours and it leaves me overstimulated the next day, i'm really sensitive to anything with beta agonistic properties.

    Antihistames don't work and actually make the stuffyness and asthma worse because norepinephrine (or epinephrine?) drops when histamine isnt bound to the receptors.

    I'll write a bit more later.
     
    Last edited: Sep 9, 2017
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  6. alex3619

    alex3619 Senior Member

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    I have heard this story a lot from ME patients. I have the same nasal constriction right now. It does not respond to steroids. I know wheat is a trigger. I also get bronchoconstriction if I eat wheat. Dietary triggers are something that need to be considered.

    Broncho-dilators might be good. I use the herbal extract Resveratrol, which is a PDE4 inhibitor. It helps with the lung issue, but not the nasal issue.

    Almost nothing I have ever tried has helped with nasal constriction. Pseudoephedrine is an exception, but its now very hard to get due to legal restrictions. It also raises blood pressure, and so its potentially dangerous in some instances.

    Some of us benefit from antibiotics and even antivirals. There may be an undiagnosed nasal infection.

    None of this is certain. Please keep us updated as what you might learn might help others. Also, if anyone has found solutions or even just answers, please discuss them here.
     
    Last edited: Sep 9, 2017
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  7. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    This poster is right, those might well be symptoms of ME. I sufer from dyspnea or air hunger whenever I do moderate effort like taking a bath for example, but specially after wakin up, which I believe is related to some form of disautonomy, which might or not be POTS, which I suffer from. Me is sadly a very diverse disease, symptom-wise.
    YOU SHOULD TRY YO GET TESTED FOR POTS OR OTHER DISAUTONOMIES, BY TILT TABLE TEST
     
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  8. bspg

    bspg Plant Queen

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    Thank you for all your replies.

    I wouldn't really call this experience "air hunger" (although I've had that before and it's not pleasant). I felt like I was getting enough air, it was just hard to get, if that makes sense.

    I think what @Skycloud described fits more with my symptoms, I just don't know for sure because I don't know how to tell the difference between inflammation vs. bronchospasm. I also don't know what an asthma attack feels like, unless what I experienced last night was one? I always imagined an asthma attack being unable to breathe at all or extreme wheezing. But maybe there are different levels of attack?

    Unfortunately I've never been educated on any of this so I don't know what to do when symptoms start, like last night. I wasn't sure if I should go to the ER or just use albuterol or take a benedryl for MCAS.

    It's so strange that I'm fine most days, even without treatment. When I initially saw a doctor for this it's because I had air hunger all the time for a couple of months. I don't have that anymore. This is why I feel that maybe it's MCAS or it's not regular asthma but asthma that gets triggered by something?

    The doctor who gave me the asthma diagnosis is gone and my PCP is hard to get a hold of outside of office hours. I used all the asthma meds last night and they probably helped 20% but then a few hours later my symptoms were suddenly much, much better. WTF??

    This is so frustrating. I don't even know which doctor to talk to about this because my MCAS doctor thinks everything is due to MCAS and my PCP doesn't even believe in MCAS.

    Maybe I need to find a third party to go to for a diagnosis?
     
    Last edited: Sep 9, 2017
  9. Skycloud

    Skycloud Senior Member

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    I can see it's confusing for you, you just want to know what's going on!

    I'm not familiar with how the health system works in the US. Shouldn't the PCP be able to explain more about asthma and how to use the medication, and advise on seeing any specialists?

    I am a bit concerned that you may indeed have asthma, as your doctor diagnosed, and you haven't been using the steroid. Asthma can be unpredictable. It really is better sort this out with the doctor.

    Keep taking the steroid inhaler daily as instructed, until you can see your doctor.

    Use the albuterol as/if necessary according to whatever instructions you've been given. You might not need it at all, but it's good to keep it to hand in case.

    You can then discuss with your doctor whether you have asthma or not or whether you need to be taking this medication or not.


    I did a search and found this allergy and asthma organisation in the US http://www.aafa.org/page/asthma.aspx
    They look to have good information and have a forum, maybe that would be helpful to you?

    I hope you can get this sorted out.
     
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  10. bspg

    bspg Plant Queen

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    Wow. That website is really helpful! I wish all medical websites were that thorough! Thanks @Skycloud! :D

    I read through everything on the website about asthma symptoms, diagnosis, and treatment, and I feel like I have a totally different understanding now of what's happened. I found the following info to be especially helpful:

    From a section discussing symptoms of asthma:
    Screenshot_20170909-155516~01.png
    This is exactly what it feels like and close to what I described.


    Other helpful info:
    Screenshot_20170909-153639~01.png
    This explains so much. I never knew this. I thought you either had asthma or you didn't and it was either controlled or it wasn't.

    Screenshot_20170909-154412~01.png
    Again, super helpful to know.

    All of this tells me that I likely am having intermittent asthma that is being triggered by something in my environment. I'm guessing it's probably wildfire smoke and/or something from the construction my bf is doing on our house. If this is the case, I probably don't need to be using steroid inhalers everyday but need something for when episodes occur.

    I'm going to talk to my PCP about getting re-assesed for asthma and getting an action plan put in place for when things flare up. I'm mad that my previous doctor didn't talk to me about this more. She literally just gave me a diagnosis and sent me on my way with inhalers to use everyday. :mad:

    I hope this thread is useful to those who have commented here and others who are having breathing issues (I changed the name of the thread so it'd be easier to find). I don't think any of us should just shrug off breathing problems, even if they're mild and/or intermittent. I recommend reading the info at the link above (http://www.aafa.org/page/asthma.aspx), as it's very thorough and explains a lot.

    Thanks to everyone for your replies and to @Skycloud for finding and sharing this info! :thumbsup:
     
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  11. Skycloud

    Skycloud Senior Member

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    Glad it's helpful :)
     
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  12. Learner1

    Learner1 Professional Patient

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    Have you done the CellTrend test? The autoimmune antibodies it finds can produce the symptoms you're experiencing.

    They gave me POTS, with higher BP and heart rate, but others here on PR have a variety of symptoms, including the breathing ones.

    @Gingergrrl perhaps you can help here?
     
  13. bspg

    bspg Plant Queen

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    @Learner1 I'm familiar with the CellTrend test and my doctor wants me to have it done. Unfortunately, I am just beginning my SSDI appeal process and have zero income so I cannot afford the test.
     
  14. Gingergrrl

    Gingergrrl Senior Member

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    I will do my best (and am trying to catch up on all the threads I missed in the last 4 days while I have some brief time on the computer!) but I have never had asthma or any obstructive lung disease/diagnosis.

    My breathing issues always showed as "restrictive" pattern (vs. obstructive) on spirometry and PFT testing. We now believe they are due to a combination of autonomic dysfunction (POTS, very low BP, etc) plus auto-antibodies that were causing muscle weakness to my diaphragm and accessory breathing muscles, especially when I stand/walk.

    The combo of high dose IVIG & Rituximab (to knock down the level of autoantibodies) plus meds like Midodrine to get more blood perfusion to my heart and lungs when I stand (even when it does not raise my BP on an arm cuff) have been helpful although this is the still the #1 most intractable issue that we are trying to resolve long-term.

    In regard to Cell Trend, it helped my doctor to confirm that I have "Autoimmune POTS" and we found the testing to be useful. Hoping this helps.
     
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