Getting my head around it

Hi there,

I am 33 and have recently been diagnosed with asthma. It all kicked off at the end of April with hayfever, but didn't go away when I stopped having hayfever. I seem to have the not wheezing, coughing all night kind, and I had spirometry tests which confirmed there was asthma.

When I have symptoms they are mostly relieved by Ventolin, and I have bad days once or twice a week when I have a really tight chest and get out of breath. I am also taking Clenil but this seems to make no difference at all.

I will soon be having my first appointment with the asthma nurse at my GP's and I was wondering what to expect. The GP I saw said she would help me manage it better and help me come off the Clenil, but she also said I shouldn't really be having any bad days or symptoms at all on it. I am hoping the nurse will be more helpful. I don't really know what to ask, other than, Ventolin works but Clenil doesn't seem to prevent symptoms at all.

Can anyone help with this? What should I expect, and what should I ask?

Thanks.

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hi gamba,

Your asthma nurse will ask you how you are,if you are coping and if she can help you in

any way with asthma meds.

Dont worry what to ask ,they are use to it and she will realy help you and monitor how

you are getting on

you could wright down a few things if you want to make sure you get the info you need and be

good idea to ask for a PF monitor xxxx

good luck love Glynis xxx

[Hidden]

Hi Gamba,

firstly welcome to the forum, you will find friendly people here who can give you great advice through trying to cope with their own asthma. Have you looked at the leaflets on the site? they do one what to expect at an asthma review which will explain what they ask you and help you with questions to ask. But as you are newly diagnosed look at the other leaflets as they have lots of useful info that can help. I keep a copy of asthma at your fingertips, which i find very useful by dr mark levy/ trisha weller/prof sean hilton i've got the 4th edition. The local library should keep it if not try amazon, i picked up a copy for about £3.

Yeah it's abit daunting to start with but you soon learn your triggers/ symptoms etc. Also just had a thought- believe me that don't happen often at mo lol try talking to the asthma helpline they can be very very helpful and can guide and advise you .

Good luck and let us know how you get on.

Sj x

[Hidden]

Hello and thank you both for getting back to me. I will go through this site with a fine toothcomb!

I've already found the discussion boards really useful, particularly the bits about living with asthma and managing it - I suppose I didn't really elaborate on my subject header, but it is quite a thing to get my head around this!

I've always been really fit and healthy, so it's a bit of a shock - although I will scream if somebody else says '[celebrity sportsperson] has asthma you know...' because everyone seems to think that's a comforting thing to say! (Although it is good for sportspeople to be 'out' about their asthma. It's just when I've been having an attack and really struggling to breathe just walking across a room, knowing that this runner or that cyclist has it doesn't really help!)

Anyway, rant over. Thanks for being so helpful.

[Hidden]

HI Gamba, I've just recently been diagnosed too so know how hard it is to understand how you can go from being fine, to having these symptoms all of a sudden. There's so much information on the internet but your not quite sure what's relevant, plus everyone symptoms are different so you're never sure if what your experiencing is 'normal'!

I just saw the asthma nurse for the first time last week, she checked my peak flow chart to see how variable it was over time, asked how often I needed my reliever and asked about possible triggers/lifestyle choices which could cause you problems. I got sent off with a preventer after my appointment but am having to go back today as my symptoms are getting worse not better! It seems its a long task of trialling different drugs to see what works for you. So I'm afraid your not out of the minefield yet! From what she said, the idea is that you take as few drugs to give you as few symptoms as possible. So they increase preventer treatment until you rarely use your reliever, in theory you shouldn't need to use your reliever but should always have it with you.

As the others have said, this site is great for information, I ordered loads of their leaflets too and have found their phone line invaluable!!

Good luck and feel free to PM if you wanna chat xxx

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I found that when I was diagnosed with asthma my symptoms got worse before they got better, simply because I was noticing them for what they were. If you've been living with asthma for a while it is likely that you had got used to some symptoms and so now you may feel like your getting worse, but that is often a step in the right direction! You may find that they will increase your meds until you are symptom free and then if that is only on high doses they may want you to increase exercise to help your lungs get stronger and then see if you can cope with less meds (this was certainly the original plan with me before non-asthma things got in the way) hope it all goes well!

[hb1977]

Hi

I was also diagnosed in adulthood! I had a fab asthma nurse who helped me develop a great management plan which helped optimise meds and deal with triggers; I don't have such a great one at the moment but I guess they are all different!

Fast forward a few years........even though I was still having asthma exacerbations and attacks I got complacent (or lived in denial) and stopped my preventor/protector! (I don't even like taking my Salbutamol in publi and normally sneak off somewhere to take it!)

I'm now having a bit of a tricky time, trying to regain control and ackowledge that I do actually have asthma; but am hoping that my regime of drugs will help achieve some control over the symptoms!

I've found the asthma UK site, discussion board and literature very helpful!

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Hello, Gamba

I was 32 when I was diagnosed and it took a fair bit of getting used to - I, too, am a 'cougher' and initially my friends thought I had hooping cough! Thankfully, I have a fabulous GP and an old university friend who'd gone through the whole diagnosis rigmarole a few years before me, so she was a fountain of knowledge and support.

I'd say that having someone to talk/bounce frustrations/questions off is the most important thing at this stage - I have many great friends, but only one who actually could know how I felt because she'd gone through it all as an adult.That's not to say other friends aren't helpful, but naturally they can't relate to your situation fully unless they live it, too. This board, I know, provides support and friendship to many who need it.

As others have said, you may well find things go a little downhill before they improve: I tried several different steroid/combination preventer inhalers (Clenil amongst them - nasty: made me cough more) before settling on the one I have now: various side-effects, etc. had to be endured and reported before we found the combination that worked for me. A peak flow monitor/diary might be worth looking into if it's not already been instigated: it's a good way for you - and your nurse/GP - to see how you're doing and it'll give you a good sense of what's 'normal' for you.

It's easy to feel disheartened and despondent if this happens and you feel as if you're never going to get to a stage where it's all under control: I know I did from time to time, and it's entirely normal. I found that I dealt with it by doing what I always do: finding out more. I asked my GP/friend lots of questions and soon got over feeling silly for asking seemingly inconsequential things. Now I understand both the science of asthma better and how it affects me personally.

I think we all like to know we're not alone, and in this you're not. There are many kind and helpful people on this board and I'm sure you'll find the answers to many questions here if the main site's information doesn't help. Take a list to ask your nurse, if you have any - she may not know all the answers, but she ought to be able to go through what to expect during the upcoming months. You may be exceedingly lucky and find a combination of meds that works for you immediately - fingers crossed!

[angievere]

Can't really add to what the others have said here, except the nurse will probably want to check your technique for taking inhalers and checking peak flow. Be very open with the nurse and explain your concerns. And this Forum is excellent for exchanging experiences and giving support. Also nice to know you are not alone. Good luck and let us know how you get on.

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Hello, thanks for all your replies. I think that not being alone is important!

Also, a really good point is getting used to recognising symptoms and 'normality'. Actually I think I've had this for ages but just put up with it. Using Ventolin the first few times was a revelation!

I'm going to make my appointment next week - will let you know how I get on...