Feeling scared

[Meliko]

Hi everybody,

I'm being self indulgent but I just want to tell somebody sympathetic! My peak flow has been dropping for 2 or 3 weeks, in the 'amber' but not the 'red' zone, I haven't been able to sleep because I'm so uncomfortable, I need my blue inhaler multiple times a day, my voice varies between present, achy, and non-existent . . . and the GP said my temperature and SATS were fine, so there's nothing wrong with me.

I know I have a big asthma attack coming (=A&E and anything that follows) but if I know it's coming why can't we do something to stop it? I am scared, my asthma nurse is off sick and the locum nurse says she can't help. I can't even let myself cry and relieve my feelings a bit because that upsets my breathing and makes an attack more likely.

I will see the consultant tomorrow, and I hope he'll listen. But I wanted to tell somebody and get it off my chest tonight. I'm frightened and I DO NOT WANT another big attack.

[WheezleSneezle]

It doesn't sound like there's "nothing wrong with [you]" to me. Just because your SATS are fine doesn't mean your asthma is fine right now. I know it's really hard but try to stay calm as possible as anxiety and fear make asthma a lot worse. I hope your consultant listens to you. He should do. Far more highly trained than a GP (who often just don't understand).

[EmmaF91 Community Ambassador]

I agree with wheezlesneezle! It definitely sounds like there’s something going on and that you may need some steroids. Hopefully your cons today will be more helpful!

[Meliko]

Thank you both of you! I'm a lot calmer this morning. And consultant says steroids, antibiotics, and he'll write a letter to the GP suggesting that I'm allowed to control my steroids myself when I think I need them, so phew. And the letter was all his own idea!

[WheezleSneezle in reply to Meliko]

In really glad to hear it went well for you. I also self manage my steroid dose. It’s nice to have doctors who trust me enough to do that. I alway inform them of course. I also have a personal spirometer at home which lets me know when I need to call help or see the dr. I email the results to my doctors along with what I am doing about it with medication. Communication is really important. I’m glad you are getting the help you need <3

[Tugun]

Hi, I'm so glad everything worked out. Your consultant sounds great and very proactive. I've been there and when I knew I was seriously sick and the "professionals" weren't listening, I felt very alone. Luckily after a few phone calls I found someone who was able to help me.

Temperature and SATS are not a definitive indicator of how you are going. I know that I am coming down with a chest infection before my temperature goes up or any other obvious symptoms. Sometimes I get more tired before it happens but usually I feel a definite tightening around the upper part of my chest and, like you, require more ventolin (Salbutamol) to release this tightening as it becomes harder to breathe. It is only after a couple of days that the actual infection shows it's ugly head to the outside world. Usually, I kick into damage control with extra vitamins etc, more sleep and keeping warm to try to head it off. If it starts coming on more strongly, I am lucky enough to have Tamiflu on hand to try and put a stop to it. Tamiflu doesn't work for everyone and there are side effects but it has helped me on a number of occasions to stop the virus.

It's interesting that the consultant gave you antibiotics to help fight whatever was coming on you. I'm glad he was able to help. If possible, keep a copy of the consultant's letter of recommendations to show to any doctor you need to go to when this starts happening again.

[WheezleSneezle in reply to Tugun]

I know what you mean with knowing something is going on before it’s visible and audible to the outside world. Tamiflu is wonderful for me. I don’t keep it in the house but my GP prescribes it and antibiotics as soon as I tell her I know something is going on. I keep several types of antibiotic in the house so that I don’t have to wait for an appointment and a pharmacy to be open and me have transport before I can start taking them. I call her and she gives me phone authorisation to take them. It’s particularly important because I have recurrent aspiration pneumonia from breathing in reflux and that’s not something that can wait to start antibiotics.

[Tugun in reply to WheezleSneezle]

Hi,

It might sound crazy but it is good to know that there is someone else out there who uses Tamiflu when required. A couple of doctors here in Australia have said to me that they no longer prescribe it because it doesn't work. I only know that it works for me. It's good to know that it works for you too. There are still doctors here who do prescribe it and the local chemists ran out if it last flu season - so it's still in use. Wishing you all the best.

[WheezleSneezle in reply to Tugun]

Thanks. Ditto re it being good to know someone else uses it. I have heard from various doctors and a nurse practitioner that it’s useless but that is not my experience. The hospital I go to also use it and every time I’m admitted during or after a viral infection they give it to me as a precaution.

[Tugun in reply to WheezleSneezle]

Hi,

It's good to know that hospitals are using it. I read an article from a New York doctor during the swine flu epidemic years ago. At the time doctors believed that it only worked if given in the first 24 hours of the virus. He had seen that even if it was given after that time period, it still helped the patient to recover. It's interesting that doctors are now using it for you as a precaution. Do you get any side effects?

[WheezleSneezle in reply to Tugun]

No side effects that I notice. According to what I’ve been told if it’s used within 48 hours of first symptoms it works but has some effect afterwards just not as much. The standard regime for me is to take it while waiting for swab results.