Navigation

New (August 2016) to Adult Asthma & This Group: Seeking Suggestions

Good Morning Everyone,

I've been reading through your Asthma Support Group an I am very impressed. You all sound very knowledgeable and supportive. 

I am 26 years old and I am new to adult asthma and I do not really know what I am doing. Historically (childhood), I have only had asthma symptoms when I was battling a severe respiratory issue or infection.

I have had asthma symptoms as an adult since a respiratory infection & bout of bronchitis August 2016.

I am getting better at identifying my triggers (cold air, smoke, mold, dust, exercise…) and my symptoms seem to be lessening, but I' have an almost constant chest tightness and I get shortness of breath easily (light cleaning, walking fast, going down stairs, talking…). As a result, I have stopped most of my physical activity. Is this my life now? 

I have been to the doctor several times and they have me on Albuterol (every 4 hours & with exercise), Prilosec, Claritin, & Singulair. The albuterol is paramount in my asthma action plan, but it makes me feel terribly shaky, irritable, and gives me headaches.  

I'm feeling a little lost and confused and I feel like I am missing something. I just want to get back to doing things without feeling terrible.

 

Is there more I should be doing? 

Any advice is welcomed and appreciated. 

 

Thank you

Kelly

46
134

Comments 46

  • K8sMom2002

    Hi, Kelly and  and … I can tell you that getting diagnosed as a adult feels like the rug is being snatched out from under you. I was diagnosed with asthma much like you — after a bout of bronchitis that just wouldn't quit. That was in my very early 30s. My inhaler and I have been "frenemies" ever since.

    I will say that over time, my body DID adjust to the Albuterol. When I first started using it, it would give me a migraine every single time, and it also made me terribly shaky. But after my doctor told me that I was waiting too late to use the Albuterol, which meant I had to use MORE of it, I started using it as she directed — at the first sign of an attack. It meant that the meds got down into my lungs better and I wound up taking less of it. And now I don't get migraines and the meds don't make me as jittery. Also, I don't have to use my inhaler nearly as often — except when I have a flare.

    You ask for things that you could be doing … so I'll pose a few questions of my own:

    • Do you have an from your doctor?
    • Are you using a spacer? I thought a spacer was just for little kids, but actually , too. It helps the meds get into the lungs where it can do some good.
    • Have you identified your ? My asthma is now much better controlled if I really make an effort to avoid the things that set off an asthma attack.
    • Have you had your and shots? 
    • Have you told your doctor how much effort is required to move around so that maybe you can have some adjustments in your medication or that you can be assessed for physical therapy?

    I know exercise sounds like the last thing you want to do, and it IS hard when you can't breathe and when exercise triggers an asthma attack. (I have that, too.) But exercise that you can tolerate can strengthen your lungs and help increase your muscle mass and make your body work more better even with asthma.

    I'm not talking running or jogging or weightlifting. Talk to your doctor about what the right level of exercise or activity is for you. 

    And … we are definitely here for you! We want to encourage you and be there for you! I know that there are other folks here who were diagnosed as adults … @GigiGibson, @Gloria and @Shea are a few of our more active "adult diagnosed" members. And @Mandy and @Nemo88 always have excellent advice and suggestions as well.

     

  • Gloria

    Hi Kelly. I read about your experiences with asthma. I will be 64 in two days. I aquired asthma after getting bronchitis one  year ago. 

    It was hard at first even getting a diagnosis. Finding meds that work can be a challenge. I found this group and It has beeen a great resource for information that I can bring to my docs; also for encouragement.

    At first albuterol was not at all helpful. People on this group told me to get a spacer. I had no idea what that was, but when I got one, it made a huge difference in the efficacy of the albuterol. 

    I have had to try a number of meds before I found what works for me. In the process of figurung things out, allergy tests showed I have no respiratory allergies. But I have learned what are my triggers: perfume, cigarette smoke, cold air and dust.

    Glad you found this group. Welcome!

  • Jen

    Hi kellyann,

    Welcome to AAFA's asthma support forum.  After dealing with  a lot of changes due to asthma, it is completely understandable that you have so many questions and concerns.  I think a lot of those things are worthy of discussion with you doctor.  What type of doctor is managing your asthma?  A primary care doctor or a specialist?

  • Melanie Carver

    Hi @09kellyann,

    Welcome to AAFA's asthma support community. We're glad you found us. 

    Here is some information about 

    It includes this important note:

    Will I Always Have to Take the Same Amount of Medicine?

    Not always. You will probably take more medicine when you begin treatment to get control of your asthma. After a while, you and your doctor will learn which medicine(s) control your asthma best and how much you need. Once your asthma is well controlled, it may be possible to reduce the amount of medicine you take. The goal of this step-down method is to gain control of your asthma as soon as possible and then control it with as little medicine as possible. Once long-term, anti-inflammatory therapy begins, your doctor will want to monitor you every 1 to 6 months.

    Have you tried any other long-term control medicines besides Singulair? If your asthma is not yet controlled, you may need to change to a different "controller" medicine. 

    Asthma is considered "uncontrolled" if you are needing to use a rescue inhaler (like Albuterol) 2x per week or more. 

    P.S. It sounds like you're doing a great job at identifying your triggers. It took me a long time to figure mine out!

  • 09kellyann

     

    ,

    Thank you so much for the warm welcome. It was comforting to hear that I am not the only one who is "frenemies" with my inhaler. Your tale of growing friendship is inspiring. 

    To respond to some of your points.

    • I do have an asthma action plan. I do not have an allergy action plan. I have yet to meet with an allergist. Is that important?
    • I love my spacer, it makes life os easy. 
    • I believe I know most of my triggers. Cold air, mold, dust, and cigarette smoke (which seems to pop up everywhere)
    • I have not had shots for flu or pneumonia, I've never gotten them. I've been very healthy until this past August. Are they helpful?
    • I will talk to my doctor about the limited physical activity. Great point. I'm always scared I will have an issue and whenever I'm feeling great I seem to overexert myself and end up wiped out for the rest of the day.

     

     

  • 09kellyann

    Gloria,

    Thank you so much for sharing your story. It feels good to hear that other people struggled with figuring this out. Im so glad to hear you figured it out. I hope I am on my way. 

  • 09kellyann

    Hi Jen,

    I am currently working with my primary care doctor. I think you are right about working with my doctor more on this. Is there a person I should look for that might have more of an understanding? 

  • 09kellyann

    Melanie Carver, 

    Great information on dosage over time. Thank you for your words of encouragement on identifying triggers.

    I have not tried any other long term medication. Should I ask my doctor about it?

    It is good to know that there is a place and time when my asthma may be under control. I'm very happy that I am no longer having the panicked uncontrolled symptoms, but I am still having chest pressure and shortness of breath regularly (slightly less than every day). 

    I am very thankful for this improvement, but I am wondering if it gets better. 

    My inhaler is part of my green day action plan. I guess I am using it for more than that more than twice a week. 

  • Mandy

    Welcome Kelly Ann,

    I just want to say that there is no silly question to ask your primary care doctor. Make a list of all the things you'd like to know more about and prioritize them. That way if time is an issue you can get the "biggies" answered. That tightness and limited activity is something you want to let your doctor know about for sure. There are definitely some other options medication wise to discuss. While I am not a doctor, I have tried just about everything Finding the right med combination can take patience and time. Hang in there!

    I developed severe asthma in my second pregnancy. And while it has been a struggle, this group has been so supportive and helpful. And there is a ton of great and credible information on the site to help you out as well!

  • Jen

    kellyann,

    I think it is good to see an asthma specialist.  Many see a pulmonologist, while others see an allergist.  Either one would be a good start in helping with asthma issues.

    As for the , AAFA recommends that you get a shot every year.  Having asthma puts you at greater risk of complications from the flu.  , such as pneumonia, can also trigger asthma, so I think it is important to ask your doctor about the pneumonia vaccine as well.

  • Melanie Carver

    Hi @09kellyann,

    This is a short, informative video featuring Dr. Rohit Katial – the chair of AAFA's Asthma subcommittee on our medical scientific council :

    It sounds like right now your asthma is limiting your life and preventing you from doing things you might want to do (exercise, etc.) – so it is worth seeing an asthma specialist because with the right treatment for you (everyone is different), you will have less and less symptoms.

    Some people have severe, difficult-to-treat asthma; most people have treatable/controllable asthma. No matter which type of asthma you have, a good quality of life is important. We're here to support you on your journey!

  • Kathy P

    Hi and Welcome! I'll echo the suggestion of seeking out a specialist. They often have more depth of knowledge especially when it comes to more complicated cases.

    My asthma is mainly – triggered by allergens. So, my allergist is who manages my asthma. My PCP is perfectly happy with that arrangement. When my kids started showing signs, initially their pediatrician started treating them, but then referred us out to the allergist since she was not an expert.

    Others have a plulmonologist who manages their asthma. It's worth a discussion with your primary as to whether a referral would be beneficial.

  • K8sMom2002

    I would definitely ask your doctor ASAP about getting a the  and a . Both the flu and pneumonia are extremely dangerous for folks who manage asthma, so I'm a big believer in an ounce of prevention. And this year there's media coverage of widespread flu. 

  • K8sMom2002

    KellyAnn, how are things going? Were you able to talk with your doctor about your concerns and a whether a possible referral to a pulmonologist or allergist is a good idea in your case?

  • 09kellyann

    Good morning,

    Thank you for following up.

    I did meet with my Primary Healthcare Provider, a physician assistant, last week. We brought up allergy tests and meeting with a pulmonologist as well as my lack of improvement. The PA gave us a new medication and said that my consistent chest pain and extreme fatigue is common. The PA did not recommend an allergy screening or refer us to a pulmonologist. The PA did say that if I do not feel better towards the end of this week I should come back in. 

    I'm still easily exhausted and having chest pressure. 

    We're hoping this medicine helps. I'd like to get back to work and enjoying outside life again. 

    How are you doing?

     

  • Jen

    I think that if you are unable to get relief with the plan your primary care provider has, a specialist (such as a pulmonologist) would be helpful.

  • K8sMom2002

    KellyAnn, it's tough that you're still feeling exhaustion and chest pressure. I'd definitely follow the PA's instructions about going back in at the end of this week if I didn't see some improvement. I might shoot for Thursday rather than Friday, when a doctor's office is really crazy-busy. Plus, you'd have an extra day to get a referral from your doctor's office to a pulmonologist or allergist. 

    Usually when I've emphasized that I feel the need to see a specialist, doctors and PAs will agree — especially if it's the second time I've asked directly. 

  • 09kellyann

    Wow. Thank you all for all the tips. 

    We are headed in next week (first available appointment). Our goal is to get a referral to a pulmonologist. 

    We had a chat with a very informative nurse in passing, who basically told us that our current primary care (navy medical) will likely keep prescribing different meds and will not send us for any tests. We have to meet with a civilian doctor or specialist if we want actual answers. 

    We will likely be switching primary to a civilian doctor soon. 

  • K8sMom2002

    Hmm … I believe @Anne P has some experience with the military medical system. I hope you do get those tests and that referral. Perhaps that nurse was a bit pessimistic? 

  • Jen

    I'm glad to hear that you have an appointment coming up soon.  Will it be difficult to switch to a civilian doctor?

  • Anne P

    Just to clarify, have you requested in writing to change to a physician PCM instead of a PA for your PCM?  You can request a physician PCM, and you are more likely to get referrals from a physician than a PA (at least IME).

    Have you filed an ICE comment about the provider?  Have you needed to go to the ER for your asthma?  Attach as much documentation as possible to your ICE comment, including the number of times per week that you are using albuterol and the exact dates that you requested referrals to a pulmonologist and were denied.

    Are you near a major MTF that would have military pulmonologists, or do you need referrals to a civilian pulmonologist?

    I had a fairly lousy experience with a civilian CNP at a MTF, and I changed to Tricare Standard to get away from her.  Knowing what I do now, I probably could have worked the situation better and stayed within Tricare Prime which is cheaper.  

     

     

  • Kathy P

    Wow Anne – I hadn't realized that military health care was so complicated! Thanks for sharing your tips.

  • 09kellyann

    Seriously Anne, 

    I had no idea I could do any of that. I will definitely get started. That is some amazingly helpful directions. 

    I am brand new (1 year) to military medical. This is our first real time dealing with them. 

    We have requested a change to a physician for my PCM. We are in a big military area and their are military pulmonologist. We would definitely prefer to stay with prime. 

    I cannot wait to try your tips. 

  • Anne P

    You're welcome!  If this doesn't work, let me know; and I will brainstorm some more ideas.

    IME, if you get an active duty physician, he/she will write referrals anywhere.  They don't think about cost of referring you out etc.  They just send you where you need to go.

    Do you mind me asking which area you are in?  I might know some of the doctors.

  • Anne P

    And by the way, I was that new spouse who didn't know how to work the system also.  That's why I switched to Standard instead of getting a new PCM and filing an ICE comment against her.  In the end, it cost us financially to switch to Standard.

    Remember that if you get an asthma diagnosis, you need (your sponsor needs) to enroll you in EFMP.  Mild asthma is not that restrictive for duty stations, but enrollment is required.  (You can even go overseas with mild/moderate asthma.)

  • Jen

    Anne P – Thanks for your input.  Kellyann – Keep us posted on how things are going.

  • Kathy P

    Kelly Anne did you see the doc? Were you able to get a referral to a pulmo?

    Have you started the process to switch to civilian doc? 

  • 09kellyann

    Jen, 

    Thank you for following up. We are in somewhat of a limbo. I have a new doctor and a pulmonologist. We are up to the Flovent 110, which is helping. 

    We met our new doctor about a month ago and he was awesome. He sounded very proactive. Unfortunately, he is out of town this month and they cant get us in for a couple weeks. 

    I am still having almost constant chest pain, but It does subside and my breathing is getting much better. I am still triggered more than twice a week and am easily exhausted or triggered with household chores, but it is so much better than it was. 

    The next step is a sleep study (they're concerned with sleep apnea) and to check my thyroid (there is some throat swelling) to see if these issues may be contributing. After that we go to the cardiologist to see if there could be a heart issue that is exacerbating things. 

    Not a lot of answers. Lots of possibilities. Happy to be breathing better. Fortunate to have found this community. 

    How are you doing this time of year?

  • K8sMom2002

    KellyAnn, that's great that you have found some relief and you're breathing better, and glad we're here to offer support!

    What sort of things are they trying to rule out with your heart? Have you had cardiac symptoms?

  • Jen

    Given the chest pain, I think I'd want to see the cardiologist sooner rather than later?  Is there any chance you can get in while the doctors are working on the asthma and thryoid stuff?

  • 09kellyann

    Thank you so much for the follow up. I cant get over what a great community this is. 

    We are not sure what we are hoping to rule out, but I have had daily chest pressure and bouts of severe chest pain. I have had a few EKGs and some tests (just the basics), but all while I feel perfectly fine (no chest issues). I'm not sure if it is simply an asthma symptom, a side effect of all the medicine, or something new, but it's a little scary and no one has been able to offer an explanation. 

    We're really hoping they'll refer us to a cardiologist next week. This is starting to feel normal and I really don't want that. 

  • K8sMom2002

    Oh, my goodness, no, I wouldn't want that to be your new normal! I'm glad your EKGs so far have been normal, but in the event of chest pain I wouldn't hesitate to seek immediate medical attention. 

    There are other possible causes to chest pain that don't involve the heart — reflux, GERD, costochondritis, even gallbladder attacks. All of those can cause pain that is felt in the chest. But I'm like you — I'd want a cardiologist to take a look and help me rule out anything related to my heart. 

  • 09kellyann

    Yeah, chest stuff is no joke. Cardiologist here we come. We are really hoping it is not a heart issue, but we also really want to know what it is. 

    I've been to the ER a handful of times for it, but through the course of waiting it lessens and by the time I am examined the issues dissipate. Then they basically tell me its probably asthma related and to follow up with my GP. Which I do, but no answer yet. 

    Who knows? I've heard asthma can be different for everyone, this might be part of mine. 

  • K8sMom2002

    I hope you can get some answers … I can see why you would be worried. 

    One non-cardio-related source of chest pain that some folks with asthma can have is something called costochondritis, or as the says:

    inflammation of the cartilage that connects a rib to the breastbone (sternum). Pain caused by costochondritis might mimic that of a heart attack or other heart conditions.

    I'd ask the cardiologist about the possibility as he's ruling out more serious issues.

  • Pljohns

    Good luck and I hope everything is fine!  I pulled my chest wall muscles a few years ago and thought I was going to die!  It took over a year for them to heal-everything caused sharp, stabbing chest pain.  Hope you feel better soon!

  • 09kellyann

    Thanks everyone, so far so good. No serious issues. I have a stress test and a sleep study coming up in the next three weeks.  

    I cant wait to get all the scary stuff crossed off the list. I really hope I am just having muscle spasms or something. I think I can tell the difference, but muscle spasms are the best out come I can think of. 

     

  • K8sMom2002

    Fingers crossed that the two tests will fill in the missing pieces of the puzzle! And I'm really glad that you're experiencing no serious issues right now. May it continue, and may whatever you find out to be the cause be minor AND fixable!

  • 09kellyann

    This should be our community mantra. 

    "may whatever you find out to be the cause be minor AND fixable!"

     

    Thank you for those excellent words of encouragement. 

  • K8sMom2002

    @09kellyann, checking on you … I'm hoping all those tests you had scheduled turned up either something normal or would fit in with the mantra: 

    "may whatever you find out to be the cause be minor AND fixable!" 

  • Shea

    Hello, I jumped on this thread late. Welcome to the community Kelly ☺!

    I was diagnosed with something called Churg-Strauss Syndrome at age 26 after onset of asthma issues. It is a rare disease, hard to diagnose, and it effects the heart, lungs, and other organs. It is an allergic disease characterized by high level of eosinophils (which you can see in a CBC blood test), but other diseases can involve high eosinophils too. My doctors missedtthe high eosinophil levels, never mentioned them, and I ended up having a heart attack from these allergic eosinophils surrounding my heart and choking it, at the age 26! A pulmonologist in the hospital luckily had heard of this disease, did some tests, diagnosed me, and treated me quickly or I wouldnt be here.

    My main trigger now is dander from cats and dogs  (I was living with cats and dogs when my symptoms developed, and I had lived with dogs most of my life, but not cats until I started Singulair which allowed me to be around cat dander without the former huge symptoms, although that medication is being correlated with a higher incidence of this previously rare disease that I developed… probably because it does not stop the whole allergy and I attribute me living chronically around things I was allergic to to the severity of the disease. Anyways, long story less long, I strongly recommend an allergy test AND not living with things you are allergic to (Now I live in a different home, dander-free, with pet lizards, and my young son, and am doing much better symptom-wise AND in overall health).

    Also, if you have environmental allergens like mold or dust, it is good to know tbose too, as allergists are helpful in advice to reduce those things in your home, which can be tremendously helpful.

    So if you havent met with an allergist, you may want to, because it can be so helpful.