Do I even have asthma?

[Chocaholic29]

I've struggled with breathing issues for years on and off, but part of me is now wondering if it's all just anxiety/ reflux related.

I had lung function tests which all came back normal (FEV1/ FVC ratio 85%, Feno 10 at most, best peak flow is 500 and its never really different when I'm having a shortness of breath episode)

Even the healthcare providers I've seen, Respiratory Consultant and Asthma nurse, say they aren't convinced asthma is the cause.

I'm only asking as they put me on Montelukast around 3 years ago, and I've honestly been such an anxious, nervous, agitated wreck whilst on it, I want to stop taking it but I'm frightened that I'll expose myself to having an asthma attack.

I have still had breathing issues on and off since being on montelukast so I'm not sure it's really helped anyway. Often inhalers don't help, although there has been occasion where they do.

Just putting it out there to see if anyone else has had a simar experience really. Thanks 🙂

[Aquariel]

I've had real asthma since being 4 in the days when inhalers didn't exist. Then 4 years ago I got shingles and massive acid attack. Then the new asthma started. Oh its your nerves. No it isn't! Any excuse will do. Then its ILO, not asthma but a throat blockage. It doesn't respond to monteklust or inhalers after 70 years. I've found ways of reducing it. They recommend breathing exercises(because they'll insist to the end its nerves) and of course they don't work. This does.. don't eat after 4pm. let your stomach empty before eating anything. In my case wheat will worsen it. You can have vocal chord tests but unreliable. But try this... head tilted back, open mouth, somehow stretch the back of your throat by deep yawn. If it clears, its the throat. Inhalers will work but to a very low level. There's loads of videos, none work for me. We've entered the twilight zone.

[Homely2 Administrator]

When treating you medics need to work with you.

I have got asthma, but part of my asthma is made worse by acid reflux. My asthma is made better by breathing exercises.

My consultant is sending me to a respiratory physio, to help me with breathing exercises and to ensure there is nothing breathing wise I am doing that is worsening my position.

With your breathing issues, exploring the world of breathing exercises, and seeing if you can see a respiratory physio to me makes sense. Similarly discussing acid reflux with your GP is sensible.

Re discussing using montelukast, and or trying inhalers, is something that your medic should be very happy to discuss. My medics have always been happy to help me change to different meds under their supervision.

I would have a chat through with the asthma helpline on 0300 2225800, and compile a shopping list of what you want to try, then go and see your medic with your list.

[Loveducks]

Hi Chocoholic, great name by the way lol. If you feel Monteklust is causing your anxiety issues we as the patient are normally right. After just 2 weeks on it I had to immediately come off it and it was reported yellow card and now on my records never to be described to me. Like you I felt also it made no difference to my asthma, never persevere with something if it is disagreeing with you, there are plenty of other medications to try. It worries me as well that your asthma nurse and respiratory consultant aren't convinced it's asthma yet keeping you on Monteklust. You are always entitled to a second opinion and maybe it's time to find a different consultant, I so wish I had sooner as it's been life changing for me.

I went through the hoops for a few years, A&E numerous times and sometimes doubted if it was actually asthma or not. I am now difficult to treat asthma, although allergy related more, I am permanently on Prednisolone but try to keep it at a low dose and now trying Forstair as not realising Flutiform was causing anxiety and depression, so just monitoring now how I go with Forstair as only just started using it, but it is helping with the breathing as I am on a very low dose of Prednisolone so everything crossed. I am currently housebound but as soon as I am able to visit the Hospital I have been approved for injections in the hope I can stop using Prednisolone which will be brilliant.

I also have, like Auariel mentioned EILO or just ILO which is more allergy induced for me, although cold air can be a trigger, my wheezing is in the throat and it's difficult to breath. I was so relieved when I finally found out I wasn't going mad, it felt different to the asthma, yet no one was listening to me until I finally went to the Royal Brompton and will always be so grateful. EILO and ILO are often missed as it still isn't very much heard off, but it all makes sense as my breathing difficulties started after an operation. It's often caused by damage to the throat and most probably in my case the anesthetic tube being pulled out too quickly but obviously cannot prove this but deep down I know that was the cause.

I do now suffer with anxiety which is covid related and currently working on that and I have noticed my chest does get tight but I wouldn't say it gives me asthma. I was diagnosed with GERD as well as they do say it can aggravate. I tried the tablets but didn't notice any difference so just played about with diet instead and this does seem to have fixed that issue.

Sorry it was a really long response, it's just I know how you feel having been there and how frustrating it all is. I think you just need to find someone who will listen and work out a plan with you and find something that actually works for you. When your dealing with anxiety we let a lot of things slide and sometimes don't feel we have the energy to deal with things, but please speak to someone as soon as regarding the Monteklust, that will be the first step to hopefully make you feel your old self again x

[Poobah]

First thing, I would talk with my doctor about coming off Montelukast. If your breathlessness symptoms are no better since taking it and the side effects are affecting you so badly, you need to seek support to stop it...it's important your doctor knows when you stop taking any medication so that they can monitor your health.

Secondly, despite your test results, you may have more than just asthma. Asthma is just an umbrella term and it can present itself differently in each patient. And consultants are often not fully aware of the full range of possible scenarios. Respiratory medicine is a complex area and finding the right doctor can be a challenge. Some doctors will specialise in one asthma phenotype and until you know your phenotype and have a diagnosis for the potential secondary cause of your symptoms, the right treatment may prove elusive; supplementary treatment, physiotherapy, breathing exercises etc.

So what to do? Get clear about when your inhalers work and when they don't. What is different about the two scenarios? Time of day, your activity at the time, have you just eaten, have you just had a drink, where are you when it happens? You're looking for a pattern, or two patterns. If it still appears erratic then at least you have gone some way to eliminating obvious triggers and you need to explore potential causes with your doctor or another doctor within the respiratory team.

Ruling out breathing dysfunction, GERD, vocal chord dysfunction, hiatus hernia, magnesium deficiency and so on, is necessary. My respiratory team only figured out my phenotype in my 50s, and only because I had volunteered for some research project they were running. But they wouldn't have been able to diagnose it any earlier as that phenotype had only been identified a couple of years before that. Has it helped with my treatment? To some degree, but we're along way off having a definitive treatment.

I only share this as the area of respiratory medicine is not fully defined and most treatments are the same regardless of the disease. But there are options and you need to find a doctor who is willing to explore these options with you beyond a couple of basic tests.

And having a chat about your concerns with the Asthma UK nurses can be beneficial, they're very knowledgeable and can help with preparing for your next appointment.