Don’t know what to do anymore 😢

[Rainbow_Unicorn]

Hello all,

I will try to keep my post short(ish) but basically, I used to work away from home and progressively, certain aspects of my health deteriorated in the final year. Eyesight went extremely bad, weight gain, allergies and ENT issues but the worst was a cough and coughing fits and chest tightness that would not go away with cough syrup or antihistamines. One day the cough was so bad an asthmatic friend gave me his inhaler to use and I felt better almost immediately.

February 2020 I finally get to a doctor and explain my symptoms and she says she thinks I am asthmatic and prescribes a Ventolin inhaler and orders allergy testing. She did a peak flow test and demonstrated how to use the machine. Her score was 400. She made me do it 3 times and my scores were 200, 250 and finally just below 300. She told me to come back within a month to review the medicine but because of the outbreak, they are only doing phone consultations and not seeing people at the surgery. I managed to get a repeat prescription for ventolin. However, I feel I have been having asthma attacks in this time and the ventolin inhaler is not helping resolve them. I seem to have them at least once a fortnight, usually whilst at work (I do live in care work with an elderly Alzheimer’s patient whose needs are changing and as a result is becoming quite stressful to work with) and they are getting progressively worse.

The other day I had to go home early and someone had to release me because I finally felt unwell enough this time to have to go and the colleague who came to cover my break informed the office that I sounded bad.

Early in the afternoon I felt my chest get tight and my cough started and went to get my inhaler. I took the usual two puffs and thought it would calm down, it didn’t so I took a third...and a fourth...and a fifth. I then followed the NHS 111 advice and took a puff every minute or so, up to ten puffs. I ended up taking an additional twenty and still, it felt bad. If anything probably worse not better. I was struggling to stay calm and ya to breathe and then went downstairs to the garden for fresh air. Still not good and still taking ventolin (over thirty puffs by now).

I called 111, they said I needed to be seen so I called my GP. They asked some questions and the GP told me to call an ambulance. I spoke to the ambulance service and she determined it was not an emergency but had a paramedic call me back. The paramedic phoned after a while and admittedly, my breathing had slowed and I wasn’t gulping as much but wasn’t still needing to pause when talking and chest was still fairly tight.

He determined that because he was struggling to get a word in edgeways (asking me the same questions as 111 and the ambulance service...) he said it was not life threatening. Ok fair enough, at least ninety minutes had passed since my symptoms first started. He did say however that I sounded wheezy and needed to be seen and I should go to my GP. The problem with this is that I work in a neighbouring city so it would take at least an hour plus to get to the home area where my GP was but fine. He apologised and said it seemed I was going round in circles. Not my true location but imagine I worked in Liverpool but home address is in Manchester and they are telling me to go back to Manchester to see my GP.

I called the surgery back and the receptionist said the GP was busy so needed to wait for the doctor to phone me back, which he did after an hour. I told him that despite his advice to call an ambulance, I was referred back to the GP and he decided to prescribe me steroids and omeprazole, even though I don’t have acid reflux. He said that he cannot book me in for spirometry until after the COVID crisis.

I picked up my prescription. My chest is much better but there is still some tightness during the day/night and I use the ventolin. Yesterday the walk in clinic near the pharmacy said they do not check chests but that if I called 111, I can book an appointment and someone with PPE would be able to see me either at a different clinic or at home. So, of course I called 111. The operator who spoke to me got a paramedic to call me back, who determined that I was ok but if my symptoms got worse, then I could call them back.

I just don’t know what to do. I only have a blue inhaler. They won’t check me over for other medication or a preventer inhaler. I normally use the blue one at least four times a day but I feel the attacks when I have them have been getting worse and really not responding to the salbutamol. Over the course of that day I still needed to use it so in total I lost count but must have had at least 50-60 puffs. Next time it happens I feel I have no option but to walk to A&E...or to lie and tell them yes, there is a chance I am pregnant.

I don’t get how you can have breathing difficulties and still not be able to see a doctor.

Sorry for the long post. Thanks for listening guys

[twinkly29]

I'm sorry you're struggling and not really able to get any help.

It could be that it isn't asthma. There are various things that mimic asthma in terms of symptoms but they don't respond to asthma treatments. And of course it might be asthma, especially as you've had some response. I know that's the issue and that you can't find out at the moment.

The omeprazole might be because reflux can cause coughing (and reflux doesn't always cause heartburn etc). Odd they went for steroid tablets rather than just prescribing a preventer inhaler and saying see how this goes!

Some thoughts:

1) were you given the peak flow meter to take home?

2)Have you been doing it twice a day, best of 3 goes? If so what sort of readings are you getting? The 400 one, was that what the Dr said you should get or what you did get?

3) It could be helpful to do it before you use your blue inhaler, then take 2 puffs (one puff, breathe it in, then the 2nd in the same way). After 20 mins redo your peak flow. It can take time for the ventolin to take effect.

Both sets of readings (regular morning and evening ones, and some before/after ventolin readings) will help when you do see someone.

4) Do you have a spacer? It's a more effective way of getting the medication in and definitely makes it easier if short of breath.

If you are concerned at all and your inhaler isn't helping do just go to a&e. At least then you would be seen.

[Rainbow_Unicorn in reply to twinkly29]

Thank you for reply Twinkly

Yes I have a spacer, it is very helpful. I use it all the time, the doctor recommended not using the inhaler without it.

She didn’t give me one to take home, so I don’t have a peak flow meter and I was not sure whether to buy one because they still haven’t made a final diagnosis. It might be helpful though. Do you think the red, yellow and white one is good or an electronic one?

She had said I have risk factors for asthma (some allergies, previously lived in a heavily polluted place which, all the problems seemed to originate from).

Usually the ventolin is fine. Works within five minutes or less to relieve the tightness. If there is a cough along with my chest tightness, sometimes I have to take two puffs and sit about ten minutes before the cough goes away.

Luckily the steroids are just a short prescription for a few days (heard this is the cheapest option, lol).

I will see how it goes I guess

[twinkly29 in reply to Rainbow_Unicorn]

Nooo I just wrote loads and lost it!!

Anyway....

I'm glad you have a spacer, they're really helpful. I assume you do 1 puff and breathe it in, then the next puff? I've seen staff in hospital telling patients to "just press it twice then breathe, it's quicker...." so not everyone gets good advice!

Peak flow - it would be good to be able to show a doctor (when you're allowed to see one!) some regular morning/evening readings (when not just had ventolin) as they can look at trends, and also some "before ventolin and 20 mins after ventolin" readings as well. I just use the red, yellow white meters. Some people like the electronic ones but I certainly wouldn't get one before anything further in the way of diagnosis. For now I wouldn't worry too much about the readings themselves as you don't have a diagnosis - but if you do need to go to hospital maybe take them with you or at least tell them you're "suspected asthma".

I'm glad the ventolin does normally help. It must be extra scary when it then doesn't. Panic can then set in on top of breathing issues, which then exacerbates things. But people can't just not be scared. But definitely go to a&e if you're struggling and the ventolin isn't helping. Sometimes that's the key to getting help.

[MissNyxiie]

Hi, sorry that your going round it circles. When you have trouble like that it can be really scarey. Please just go to a&e if it gets that bad again, i spent a whole day struggling to breathe, called my gp to eventually be told to go to a&e. Once in a&e i was on a uv and had a nebuliser within 3 hours after tests. Ive had asthma since i was 5, now 27. It really isnt worth messing arround, especially because they can get serious very quickly. Regarding the peak flow, i bought one from amazon for £6, the same one my gp uses. Cheap and cheerful, the gp likes that i can give her readings and i dont have to go the surgery! Hope you feel better soon!

[Poobah]

It might be worth checking back with the GP once you've finished the steroids. If you think they've helped then tell the GP and ask for a steroid inhaler (preventer). The steroid inhaler takes around three weeks to kick in.

Strictly the GP should be aiming to get your asthma under control so that you're only taking ventolin about three times a week.

Once you get your peak flow meter, and start checking your peak flow every day, note how much better your PF is after you've taken the Ventolin. If there's no difference or it's worse definitely tell your GP.

Strictly, when you have an asthma attack and have used 10 puffs of Ventolin at one minute intervals, you should call 999. That hasn't changed because of Covid-19. At the very least a paramedic should come and assess you in person. I note that this has happened to a relative of mine too. The paramedic assigned the visit phoned instead and talked my relative out of the visit in spite of an oxygen level of 82. Hard to be assertive when you're ill but insist you require help if this happens again.

Stay safe.

[Rainbow_Unicorn in reply to Poobah]

That is so sad to hear, I hope your relative is ok.

I completely understand minimising risk with COVID 19 but we can’t just sit in the house and die because doctors or nurses are too scared to be around us for fear of contracting the virus. Especially when as an adult you know your symptoms and feelings and know full well it is not related to the virus.

The GP I eventually spoke to on Monday said that the nurse at the surgery does spirometry so I should book in. Not sure if I will be successful, being as there seems to be conflicting information. I still think the advice about A&E is better.

[ccccc]

So sorry to hear this Rainbow_Unicorn, I was very concerned when I heard you were taking so much Ventolin and not getting much help. The "being able to speak" thing is not always appropriate in my view - I have severe asthma and even when I'm really poorly I can still speak ok but feels like a band tightening round my shoulders when I do! I would strongly advise you go to A&E if you get so poorly again, talking to a paramedic on the phone is one thing but everyone's asthma (if that's what it is) is different and if you feel so bad you are taking massive amounts of Ventolin for days on end you need to be properly assessed where your oxygen levels are taken and your chest listened to. Try and contact the Asthma UK nurses through their helpline as they are very helpful and will know if the correct protocol is being followed.

[Rainbow_Unicorn]

Thank you for the advice everyone I think the steroids are finally kicking in, either that or both the steroids and going out for a walk helped. The tightness in my chest has been much better the past 24hrs.

However, the past couple of days I have been coughing a productive cough with a bit of blood. Yuck. Anyway, I called 111 and my GP. I finally spoke to the GP who had first prescribed my ventolin and she remembered me. I have had the productive cough for about 3.5/4 weeks(it is not linked to asthma symptoms) and they had previously prescribed antibiotics over the phone which they told me not to take just yet in case it cleared up by itself. Anyway, I started taking them and hopefully, this rubbish will go away.

If none of it does or I get what feels like an asthma attack again, I will just go to A&E.

[Gwalltarian]

I am really surprised that you haven’t been prescribed a steroid inhaler - I’ve always found the doctors practically insist on it. You might be having an allergic reaction to pollens at present. Try asking your Dr to prescribe a steroid inhaler because the relief Inhaler is obviously not working. A&E might be the solution. You obviously need to be assessed properly.