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Methacholine test this week

Hello all, I'm new to this group and dealing with asthma-like symptoms as yet to be diagnosed. I have a methylcholine test scheduled this week. I've read about it so I know what to expect, but I'd like to hear the subjective experience of some people who've actually been through it. Did it trigger an asthma attack for you? Were you exhausted afterwards? Was it scary? That sort of thing.

I have to drive about two and a half hours each way for the test in a different city, so that adds a whole extra dimension of stress. I booked a hotel room for the night after the test so I don't have to drive straight home. I think I'll be glad I did.

Thanks in advance for the feedback!

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  • Melissa G

    Welcome to AAFA! So glad that you found us! 

    I don't have any experience with this test. Sending you lots of hugs! here is some info on the test: 

  • LK

    Welcome Justneedinfo!    

    I did have the Methacholine challenge test almost six years ago.  I will say from the start that I am in the tiny percentage of people who had a very severe reaction to the Methacholine.  I don't want to scare you off, just want to let you know how this provocative test affected me.  

    Before the challenge test I only had a chronic cough and a little shortness of breath.  My PCP had me take the Methacholine challenge test to confirm his suspicion that I had asthma.  By the third of the five concentrations of the challenge I was having a severe asthma flare.  I had never had one before so had no idea what was happening.  The tech (?) at the hospital who was giving me the test, I think, gave me some albuterol but even when my DH met me in the lobby I still felt like I was having a lot of trouble breathing.  DH even told me I looked traumatized!  I wish DH would have taken me right back to the tech and said I needed more help, bu the just drove me home.  

    I was sent home without a rescue inhaler or any other knowledge about what was going on.  The next day (a Friday) I was at work at the therapeutic riding center and the director finally told me to go home.  Wish someone had told me to go to my doctor or an ER.  I know it sounds like I should have known I was in that bad of shape but somehow since I wasn't getting enough oxygen, I just wasn't thinking clearly.  I somehow made it though the weekend and went to see my PCP the next Monday.  He gave me a nebulizer treatment (which only helped a little), a rescue inhaler and started me on several asthma meds.  I wasn't much better in a few days so I requested a referral to a pulmonologist.  I saw him the next week.  

     

    In summary, I would suggest –

    • you have someone with you after the test in case it affects you even slightly as much as it did me.  
    • you get and learn how to use a rescue inhaler before you go to the test.  That way if you do need it after the test you will be comfortable using it.  

     

    Good luck with the test and hope it goes well for you!

  • LK
    Melissa G posted:

    Welcome to AAFA! So glad that you found us! 

    I don't have any experience with this test. Sending you lots of hugs! here is some info on the test: 

    Melissa, When I clicked on this link it took me to the "Spring Allergy Capitals 2018" page.  

  • Melissa G

    Lisa, the website had some minor issues…it should work now. thanks for the heads up! 

  • justneedinfo

    Thanks everybody! Unfortunately I am doing it by myself which has a lot to do with the hotel stay. It's actually a hostel in a room with several bunks. So while I'll be among strangers, I won't be alone. And I have no commitments the next day, so I can pace myself on the way home.

    My basic non-technical understanding is that the test actively tried to induce an asthma attack and then measures the severity and what it took to induce it. I'm doing this at a hospital, so I just have to put my faith in the providers to keep an eye on me and not send me out into rush-hour traffic if I'm not ready yet. I appreciate all the personal experiences. Please keep them coming!

  • K8sMom2002

    Good luck with the test! I hate that you are having to do this solo. Could you call the doctor who ordered it and ask what things you should to to prepare? And also ask what the plan is when it comes to sending you home? 

    While I haven't had this particular test, one thing that helped me with tests for me and my daughter was to have information on "what to expect?" and "when you should seek help" BEFORE the test. That way, I wasn't trying to digest and understand all of that while we were trying to leave the hospital. 

    We have to drive several hours for tests and procedures as well, and many times our doctors would hold us a bit longer rather than discharge us immediately. 

  • Js706

    I had this test a little over a year ago and given that beforehand I was told I likely had extremely hypersensitive airways (twitchy doesn’t even begin to cover it!!) I was really nervous.

    We started at a really low dose of the metacholine (as I had mentioned about airways being twitchy) and I actually reacted enough for a positive result at the third concentration (I think they had about 10 or so available from the one I started on) which is I think a 30% in spirometry (or something like that). Once I hit that they immediately gave me some salbutamol and checked that my spirometry had gone back to normal before they let me go home. I also had a pretty normal day after and wasn’t too tired out – but I was glad that I made sure I didn’t have anything I had to do afterwards.

    So it wasn’t the most pleasant thing as it did bring on quite a lot of coughing and chest tightness. But it’s important to remember that they are keeping a close eye on things and will stop once you hit the threshold and give you treatment. Also if you do react strongly you’re in the best place for it! 

  • Pljohns

    So glad the test went well and you were able to rest afterward.  At least that is behind you now!

  • K8sMom2002

    Js706, thanks for sharing your experience! It sounds as though they took it slow and steady and were able to stop the test at a low threshold. 

    What changes did your doctors make to your treatment after the test? 

  • Brenda Silvia-Torma
    justneedinfo posted:

    Hello all, I'm new to this group and dealing with asthma-like symptoms as yet to be diagnosed. I have a methylcholine test scheduled this week. I've read about it so I know what to expect, but I'd like to hear the subjective experience of some people who've actually been through it. Did it trigger an asthma attack for you? Were you exhausted afterwards? Was it scary? That sort of thing.

    I have to drive about two and a half hours each way for the test in a different city, so that adds a whole extra dimension of stress. I booked a hotel room for the night after the test so I don't have to drive straight home. I think I'll be glad I did.

    Thanks in advance for the feedback!

    Hi Justneedinfo, this is a great question! I haven't experienced the test, so I don't have any personal information to share. Just wanted to say good luck on your test!  Has it already happened or is it later on this week?

    Thinking good thoughts!!

  • Js706
    K8sMom2002 posted:

    Js706, thanks for sharing your experience! It sounds as though they took it slow and steady and were able to stop the test at a low threshold. 

    What changes did your doctors make to your treatment after the test? 

    Yeah they were really good about the whole thing. I think the concentration that you had to react by where I had it was 8 for a positive test. They started me at 0.125 and I reacted at 0.5! But there were even lower options than that to choose from so they were very well set up to deal with all levels.

    I didn’t really have any changes made to my medication immediately afterwards (although since then I have had tiotropium, theophylline and xolair added on) but it was really useful in that it showed there was definitely something abnormal going on. I also felt like my symptoms were taken far more seriously afterwards, as they had kept suggesting it might be mainly anxiety etc beforehand!

  • K8sMom2002

    JS706, so glad that they are taking things more seriously … but I hate that you had to go through that to get to that result. 

    Justneedinfo, were you able to talk with your doctors or the hospital to figure out their way of doing the test?

  • Js706

    Oh they definitely take things seriously now! 

    It wasn’t the most pleasant test but compared to what I expected it was fine – in some ways it probably helped that I had already been in hospital a few times with my asthma before I had it done so I did know what symptoms to expect.

  • K8sMom2002
    Js706 posted:

    Oh they definitely take things seriously now! 

    It wasn’t the most pleasant test but compared to what I expected it was fine – in some ways it probably helped that I had already been in hospital a few times with my asthma before I had it done so I did know what symptoms to expect.

    Expectations minus reality = disappointment … sounds like you kept your expectations in the negative area, and that gave you less disappointment! 

    I remember something fairly similar when I had a HIDA scan for my gallbladder. I'd heard others talk about how horribly painful it was, and mine wasn't that bad at all. So I sort of figured that my gallbladder was okay. Then the doc called me and said that my gallbladder wasn't functioning well at all! Apparently, like you, I'd experienced way worse pain and discomfort. 

    Thanks for sharing about this. It certainly has given me some really good information should my doc ever recommend this test for me. 

  • Melissa G

    JS706, Welcome to AAFA! So glad that you found us! How long have you been dealing with allergies and asthma?

  • Js706

    Hi Melissa G,

    I had asthma as a child (probably mild persistent) that went into remission as a teenager. But then it reared it’s head again around 3 years ago and has been steadily getting worse since! I’m 23 now.

    Allergy wise I’ve always had issues!

    I actually live in the UK but still wanted to join up as it seems to be a really nice, active community on here!

  • Brenda Silvia-Torma

    JS706, I'm so glad you joined our community!!  It's so frustrating that doctors thought your symptoms were anxiety. I'm so glad you were able to get your diagnosis and that now medical providers are taking you and your health seriously. 

    Thank you for sharing your experience with us! 

  • Js706

    Thanks Brenda! It was particularly annoying because now I frequently get nursing staff etc remarking how chilled out I am during attacks! But we got there in the end

  • K8sMom2002

    JS706, waving from across The Pond! I think asthma makes us a country all to our own, so to speak. I'm so glad that you're here!

    I can imagine that you would be annoyed by people not taking you seriously.

    Good for you for holding steady during attacks! I've always been impressed with people who could maintain their composure during bad situations. It's not necessarily a talent of mine, although I'm getting better at it.

    And some people are like my daughter… she can be in extreme pain or discomfort, but unless you know what to look for, you would think she's fine. By the time she complains, I know it's something very serious. 

  • LK

    Welcome JS706!    

    Sounds like you have a good head on your shoulders!  (Not sure if that is an American compliment that makes sense to anyone else.  I mean that you sound like a very sensible person who keeps your composure in difficult times!  )    

    Good to have you here.  Glad you found these forums!  

  • justneedinfo

    Hi everybody!

    Sorry it's taken me so long to get back to you all with the followup. True to some of your experiences, I've been deeply exhausted for several days after the test, to the point of leaving work early and even a few 8pm bedtimes.

    It was just me and the respiratory therapist, with no immediate followup from the pulmonologist. I think that was actually a good thing because we both spoke a lot more freely. I had a slight reaction on the second concentration of the methacholine, and a big reaction on the third. She said "just twenty seconds to go! Keep breathing!" I looked straight at her and said "no," and started coughing without inhaling. I kept the pipe to my lips because I didn't want to jeopardize anything with what might be considered a nonstandard result. We did the breathing test immediately and confirmed the reaction, and then once I got the "attack" under control we had a long heart-to-heart about my symptoms and the progression of my shortness of breath. 

    This started very suddenly one day in March and despite two ER visits, a pulmonologist back home, cardiology, and an allergist, this is the first positive medical test I've had in all that time. She told me that between March and July, there was a nasty localized epidemic of walking pneumonia with a dry cough that made it very hard to diagnose. She said it's also kind of a superbug, with some people only getting relief from Levaquin. If that's what I had, she said it's probably already run its course. I may have internal scarring in my upper respiratory tract that could be permanent. Or it could go away. Then I asked her if I had a positive result to this asthma test, and she said yes. "Does that mean I have asthma?" Then she got really vague as technicians do after tests. I didn't hold it against her.

    I also had all my records related to this sent from my hometown clinic to this place, and she unofficially printed off all 48 pages of what they had. It was also extremely helpful to know that while I had tried not to inform this clinic of my mental health diagnosis, most of it was there. My doc back home has stubbornly tried to push me back to psychiatry because of all my negative test results, and my psychiatrist has been one of my biggest advocates that this is NOT mental health-related. It does explain why the pulmonologist at the new clinic asked a lot of leading questions about "stress." Who has a 24-hour panic attack for 6 months straight? Fortunately I'm also a credentialed mental health provider so I knew exactly how to redirect him, and I'll continue to do that.

    I don't really respond to albuterol and I realized after I got to the clinic that I left my inhaler back home. I was still uncomfortable after the test, and it was a long anxious night of What If without that inhaler (but no relapse.) I haven't really used it since, but I keep it with me all the time now on general principle. I managed to score a followup with the pulmonologist the second week of October, conveniently right after I go back for a film festival with a close friend anyway. Why shouldn't I have some fun? My friend will join me at that followup too.

    Anyway, I really do appreciate everyone's good information and support, especially the piece about the fatigue. I had to remind myself several times that I had a stress test, and so of course I'm feeling it. I still am, but it's wearing off. I just have to see what The Good Doctor has to say.

  • Melissa G

    Wow, you have been through so much! 

    It is always food to finally get a "positive" test result. I hope things go well at your dr's appt. And I agree, you do deserve to have some fun! 

  • Brenda Silvia-Torma

    Justneedinfo, so glad you got some much needed information from the test results! Will your follow up appt give you an opportunity to meet with the pulmonologist or with the respiratory therapist? 

    Hoping you feel less tired as the days go by. 

  • K8sMom2002

    Justneedinfo, I hope that you are finally regaining a little energy. When my breathing gets messed up, it seems to mess everything up.

    And yes, the "easy" answer for people who aren't feeling things the way we are is, "Oh, just relax and breathe and it's just a panic attack." But like you pointed out … panic attacks don't last that long!

    When do you follow up with your doc?

  • justneedinfo

    Thanks all. I see the pulmonologist in three weeks. I'm spending an extra night in town after a three day horror film festival. We'll see who reacts to stress now!  LOL

    I promise an update afterwards, as long as I don't get eaten by a werewolf or something.