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Back to square one

amygx25 profile image
16 Replies

Hi,

I first started having coughing problems back in November 2022 when I caught what I thought was just a bad cold or covid, I was getting phlegm stuck in my airways which was tough to get out when coughing, and sometimes I struggled to breath. Sometimes to the point where I actually cried because I thought I was going to die.

I eventually went to the doctor after realising it wasn't just a cold and was diagnosed with asthma. I was given the blue reliever inhaler and the preventer inhaler.

They seemed to work after a few weeks and my asthma was pretty much under control, but I was having trouble sleeping because I had coughing flareups mainly at night which was driving me insane because I was getting only 2-3 of sleep a night.

I was given Montelukast in February 2023 and it was like a miracle drug, the first night I took it I slept like a baby, no coughing at all, and it worked every night since, it was like I never had asthma at all.

In July 2023 I caught Covid and things went a little wonky, the Montelukast was less effective at night and sometimes didn't work at all. Then they started working again in September 2023.

However, since December 2023 the Montelukast hasn't been working at all, and my phlegm cough is back to what it was like when it first started in November 2022, only this time it feels worse. the preventer inhaler isn't doing it's job, I'm having to use the reliever inhaler several times a day because phlegm keeps getting caught in my airways and sometimes when I cough I struggle to take in a breath and my head starts to hurt and I feel like I'm going to pass out, the reliever inhaler is the only thing stopping me from passing out now.

I don't understand why or how my asthma has reverted back to what it was when it started and appears to have gotten worse.

I'm seeing a doctor in a couple of weeks (the earliest I can get an appointment)

Any suggestions on what I can do in the meantime or anyone else experienced the same?

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16 Replies
Gareth57 profile image
Gareth57

have you tried a pharmacy to see if there is some sort of chest decongestant tryout could try until you get to the doctors

Asthmayuck profile image
Asthmayuck

Speak to a pharmacist. You may need antibiotics to clear it and they can write prescriptions now. (UK)

ChrissieMons profile image
ChrissieMons

I don't understand this either, but you could try propping yourself up with pillows during the night as that often helps ease the coughing. Drinking water should help to thin the phlegm and having the window open a bit so the air doesn't get too dry. Apart from that, I'd point out to the surgery that you need more urgent care than a fortnight's away!

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply to ChrissieMons

I'd be careful about advising someone to sleep with a window open at this time of year or any time really. Cold air could make things worse (or pollen in spring/summer).

I find I can struggle with even a slightly too cold bedroom that wouldn't necessarily bother someone else.

It's very much an individual thing really - might work for some but be a big trigger for others, so I find it's best to be cautious about advising it.

Manforallseasons profile image
Manforallseasons

I agree with asthmayuck you may have chest infection which needs antibiotics. Anytime I get chest infection with phlegm my asthma flares up and I need antibiotics and steroids to get back under control.

Hope you feel well soon.

DaveW27 profile image
DaveW27

You could have an infection or may have developed an allergy. Either way it's best to see your GP ASAP.

Patk1 profile image
Patk1

Ring 111 today& tell them u need to see a Dr .u may have a chest infection or asthma exacerbation x

Poobah profile image
Poobah

Don't use over the counter decongestants for more than 2 or 3 days. The way they work means they are only designed for short term use. If used for more than a few days, symptoms can become alot worse than they were to begin with. I'm talking about OTC meds such as Sudafed, Otrivine etc.

If you have the central heating on then you need to ensure you're well hydrated and humidity in you home or workplace is at least 30% - we produce more mucus if conditions are too dry.

But it could be an allergy, especially if seasonal. You can talk to your doctor about prescription antihistamines.

Have you changed your diet or using a different shampoo, toothpaste, laundry products etc? I had a very bad experience when I changed to soya milk, so never discount things that are deemed healthy options as being the culprit.

Alternatively, you could have a low level infection, rumbling away. It's possible to have high mucus production that then becomes infected. But your doctor will consider this.

And viruses can trigger inflammation that lingers after the virus is long gone. A medication that thins the mucus so that it's easier to shift can help, Carbocisteine is prescription only, so your doctor will consider if this as a possible solution.

Sometimes the mucus is produced in the upper respiratory tract (nasal) but it drips into the throat and lungs, causing irritation and inflammation and that creates more mucus production. This can be tackled by using nasal rinses or a prescribed steroid nasal spray.

Definitely see your doctor or asthma nurse as you need help to address this.

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador

This sounds very stressful but unfortunately asthma can do this! It does sound like you need to see a GP sooner than 2 weeks - as someone else has said, try 111. Breathing difficulties shouldn't be ignored. If you feel worse over the weekend don't wait for Monday.

If you find you're too breathless to speak, eat, or sleep, or your Ventolin isn't helping or wearing off quickly, then call an ambulance or go to A&E. This advice may help if you're not sure: asthmaandlung.org.uk/condit...

Even if you don't see anyone this weekend, I'd suggest you call the asthma helpline on Monday 0300 2225800 or WhatsApp on 07999 377 775 Monday-Friday 0915-5pm. You can chat through what's been happening and what to discuss with your GP.

carolcar profile image
carolcar

I did get that same med but mine was for a sinus problem, I do not have asthma. Evidently that med is also used for sinus Anyway bottom line I stopped using it as Xhance did the job for my post nasal drip.

Billbo911 profile image
Billbo911

Hi there, I had very similar problems to you and kept blaming asthma, but in my case it is a nasal drip which causes the constant phlegm and after seeing a consultant and finding out how common this is it might be worth trying a nasal spray. But the best option which has worked for me and which was recommended by the consultant is a nasal rinse, which I do daily. You can buy the kit off Amazon as it is not available on prescription even though it is recognised illness, without going into detail of how it works just look up Neil Med online and everything is explained fully on there. It's definitely worth a try.. don't always assume it's asthma. Good luck

Patk1 profile image
Patk1 in reply to Billbo911

Sterimar breathe easy daily is gd .

d2read profile image
d2read

I know how frightening all this can be, but while you've gotten some good advice here, I'm going to give you some that's a bit different.

Yes, if you are getting to the point where you think you are going to pass out, or are having trouble with choking, you need an emergency appointment.

But you don't need to be seen by a GP in weeks, or a pharmacist, you need to be seen in a hospital or large clinic where they can do a lot of tests and get all the results while you are there! And if you have an infection, it may be an infection in your lungs that could signal another diagnosis.

But it's also time for you to educate yourself (sorry, this is going to sound bitchy, but it's time to pull your big-kid pants up and start learning and using correct medical terminology and information). Not doing so is only going to hurt you. And it might just kill you. It's your responsibility -- no one else's.

"Preventer inhaler"? There are dozens of inhalers used for different types of asthma problems (there isn't one type of asthma, but scientists now recognize that there are many and a spectrum of problems). You need to know which ones you've used at what dosage strength, when you started and stopped, how effective it was (you did pretty well on this). Same goes for pills -- (you get full credit for saying Montelucast, but you need to specify dosage). Inhalers also have strengths, so it is important to communicate how much your dosage is -- like 240 mgs per puff. Also, if you are having trouble with mucous and choking, you might also need to use a spacer with your inhalers, a chamber that fits at the end of the inhaler. You depress the inhaler, the gas goes into the chamber and slows down as you then inhale the gas and air mix from the spacer. The gas they use to propel the medication in can actually trigger other problems for a lot of patients (including me).

Another thing you need to start doing is get a peak flow meter. Then you need to start taking readings of how you are breathing when you first get up (before moving around or taking any meds or drinking anything). This will help the doctor understand how much congestion you gained during the night. Take the measurement again as often as your doctor tells you --usually 4 times a day until you are fairly well controlled. This, along with your pulse oximeter's readings of your oxygen saturation in your red blood cells, are hugely important ways for your doctor -- or emergency personnel -- to know immediately how serious your condition is.

I recommend writing down all your readings on your calendar in your phone each day (set alarms to remind you when to take the readings). You are past the point where you can treat your breathing trouble as an intermittent problem -- what you are describing can deteriorate rapidly to something life-threatening.

If I've scared you, I won't apologize. I am always stunned by how many people are being given diagnoses of a potentially life-threatening disease and sent home with the most minimal amount of information.

Demand more! Demand better!

I'm going to end this long lecture with a few things that might help and that you can control. If you have more trouble at night, that indicates that in all likelihood you have triggers in your bedroom and bedding. Things to do: get someone to help and be sure to wear masks; run HEPA air purifiers in the room and the house while and after doing the work; borrow or rent or buy a good vacuum cleaner with HEPA filtration and a special tank to trap the dust (I inherited mine -- it uses a water tank).

1. Bed and bedding -- When was the last time you washed or replaced your pillow? If you have asthma, especially if it is uncontrolled, or allergies, you should remove all feather pillows, duvets, etc from the room. Replace with good quality foam that can be washed at least monthly in very hot water, then dry thoroughly in a dryer. If you are careful about washing them in hot water and drying them, you can probably keep them for 2-3 years before replacing, but budget for it. Be sure they are completely dry before bringing them back in. Get a dust mite/allergen-resistant mattress cover. They are large zippered sacks that fit over your mattress, are moisture-proof (so cannot host mold). They can cut down on the cost of replacing a mattress, but allergists etc normally will recommend you replace your mattress every 10 years, if not more often (especially if you've had pets sleep in your room/bed, a smoker in the room, etc).

2. Remove any curtains in the bedroom and replace with blinds (wash them down each month to clean the slats of dust).

3. If you have carpeting in the bedroom and you own the flat, get rid of it. The amount of dust and pollen and other problem-causing critters in it is stunning. You can put down washable throw rugs, or put down something like yoga mats.

4. Get rid of dust catchers -- books, knick-knacks, souvenirs, plants and other objects that collect dust. If possible, you can put them behind glass doors, in drawers or cabinets, but trying to get rid of them may help you breathe. And make all the difference in the world.

5. If you have pets, you need to make certain they are wiped down with damp cloths daily to pick up dust and pollen, after combing or brushing loose fur, and bathed weekly if at all possible.

6. If you or a partner routinely exercises outside or walks outside at times when pollen or mold levels are high, form a new system, where shoes are immediately removed when entering and put somewhere by the door, or in an enclosed box. Coats and other outerwear needs to be wiped down and again, left at the door. Ask visitors to do the same thing. People who live there should immediately take a shower or bath to get rid of any potential allergens without spreading them around the house and definitely without bringing them to the bed. I know how hard this is -- especially if your partner (or pet) doesn't want to cooperate. But it's your health -- or their preference/laziness.

Final word -- do check out the Neil Sinus Rinse system. Use the prepared salts packages, not the homemade versions, and do use filtered, then boiled and cooled water (I make up a half-gallon bottle at a time). At this time of year or when sick, I use two packages in the bottle, three times a day, with the last one an hour before bed, so it finishes draining out before I try to sleep.

Good luck. You are welcome to contact me if you think I can help.

Debbie

PS -- in the US, I'm known as an asthma and HyperEosinophilic Syndrome (HES) patient-advocate. All that really means is I've gone through a great deal more of this than most and am still here.

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply to d2read

HI - some great advice here. I just wanted to add a note of caution about sats readings/pulse oximetry. These readings can be deceptive in asthma as they may look ok even when someone is having a severe attack. If they're low, then of course pay attention - but if they're normal, it doesn't mean everything is fine if other things are concerning. Like with peak flow, no one should wait for it to drop to get help if they are struggling - eg inhaler not working, too breathless to speak/eat etc. (d2read, I know you weren't saying to ignore symptoms etc if sats and peak flow are fine, I just wanted to make it clear for anyone reading).

For this reason, ALUK don't recommend using sats/pulse oximetry for routine monitoring of asthma unless someone's doctor/medical team has advised it for a specific person. And if said doctor doesn't understand sats either and thinks that normal=no problem in asthma then rethink that advice too - I've met several and heard of more healthcare professionals who think 'sats are fine so no issue'.

Link to relevant post from ALUK for anyone who wants to read it: healthunlocked.com/asthmalu...

Amygx25 - you may also find this post on peak flow helpful. It's long but useful if you want to get a sense of how to use it: healthunlocked.com/asthmauk...

d2read profile image
d2read in reply to Lysistrata

Thanks for catching and clarifying that, Lysistrata. I absolutely would never say to ignore symptoms -- in fact, I'm one of those people who at times, esp. with e-asthma, my "normal/regular" indicators just flat stopped working. I stopped wheezing, my other test results (even initially in the hospital) would appear normal, but I would suddenly collapse on the floor. Those instances of lack of indicators caused real problems with emergency techs who thought I was "seeking attention" and that therefore they should leave me on the sidewalk.

My main point is that you need to learn your body and how to tell just how sick you are and when you desperately need help or can do it on your own. All of this should be part of an Asthma Action Plan, spelling out what to do.

Thanks again, Lys.

Cosychair profile image
Cosychair

I would definitely ask for an earlier appointment or on a weekend try 111.You know your body better than anyone. Have you had a chest x-ray?

You have to push to get seen sometimes, I was so ill in November and my doctor just kept telling me it was Asthma but I knew it was more.

I actually had pneumonia.

Your health is your priority, good luck and keep us posted.

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