I need some advice, last weekend i decided to ditch most of my medications as im starting feel like a lab rat for my doctors to try new medication on. I started a topic in here about that but now that i have taken away i am finding it easier to notice my symptoms and separate them form the side effects.
I have an appointment with my asthma nurse/doctor from the local hospital tomorrow so I am eagerly looking forward to that - i just want my life back the way it was before these two nasty flare ups i've had. But, I have a new symptom as well as the bronchospasms, Im waking up every morning hyperventilating and feel like ive run a race. Is this normal?
21 Replies
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Sounds like your body is working hard overnight to stay on top of your symptoms therefore when you wake up. Ur still tired. I wouldn't have stopped the medications til discussed further with dr and a Nurse at the hospitalOr gp as a plan could have Bern done to reduce medicines safely. U may now be having with drawal effects from the medication as some drugs take longer to leave the body than others or just ur asthma getting worse. Wish I only took the stuff you had to take unfortunately i'm on a lot more with little control
Confused
You need be verry careful stopping meds with out the docs say so.
Could be withdrawal signs but asthma can rear its ugly head anytime and
preventers take few days to build up.
Hope you go on ok with asthma nurse and can advise you what to do.
Good luck ,glynis xxx
no-one likes taking a lot of different drugs but honestly that's a crazy thing to do! what does your family think of your taking risks like that?
You should not have stopped all your medications it is dangerous!
Plumie
never stop them all at once, you could have tried reducing one of them first to see how that went and then if OK cut it out, but what you did was just not the way to reducing your meds.
didn't mean to sound harsh earlier but stopping most of your meds like that could have disastrous consequences - I'm sure you know that really it wasn't wise
Why not ask around and find a new gp with an interest in asthma who you can develop a good relationship and learn to trust? You obviously haven't any confidence in your present gp, and that's crucial when trying to manage asthma
polly your right about needing a new gp with an interest in asthma, Im just fed up. I think its taken me so long to get properly diagnoised (3 years to be precise) with asthma that im now exhausted of all the side effects of all the strong medications i now need to have. I did how ever spend the day with a racing heart beat too (and wheezing!). I know I took a risk in stopping the accolate and switching antihistamines, but i am bit bored of trying antibiotics.
And yes I did make a mistake to an extent because I think i need to step up seretide (which i have used for 5 weeks and still end up needing the reliever) and I think the reliever is adding to side effects. On average how long does it take for an asthma flare up to calm down? This all start in september 09 - but my GP didnt take me seriously and kept giving me different types of antibiotics! (it is fun saying I told you so though!)
On a high point I have just realised my appointment is with a doctor and one from the local hospital so for the first time im smiling with heart palpitations and wheezing all day!
thanks all for your replies I love this board - its helping me stay calm in this situation.
I changed from a rubbish surgery to a brilliant one a few years back & can't tell you what a difference it made. Having an imaginative & thoughtful gp, who listens, meant I got better control & was able to go back to work p/t & enjoy life instead of lung problems controlling everything as before.
Before you see this asthma dr tomorrow, maybe make a chronological note of all that's happened since sept 09, as far as you can remember? I think the history of a flare-up is so important. Don't be rushed, write your questions down so you don't forget anything. You need to get back on top of this and feel you have a real plan for improvement, instead of just floundering in a sea of drugs/side effects. There may still be a degree of trial and error getting back to your normal self, but if you trust the person treating you then you'll be more prepared to go with it until you find a drug combo that suits you & keeps you well. I do hope you feel better after tomorrow - I always think the mark of a really good dr is when you feel more positive coming out of the surgery than you did going in!
experimental GP's are an asthmatic's hazard.
i think the worst thing that i have experienced throughout these two flare ups is that my doctors repeatly gave medications which clashed with each other i would go to my pharmacist (who is excellent) and he would take one look at it and frown.
He said that bircanyl and the preds i was on clashed the antibiotics i was given for were on good for the chest infections and on that one occasion i was dragged to the A&E the paramedic was amazing! i've had a wake up call that I had to stop taking all the medications to see if they medicine side effects are making me feel worse and in the process of doing this i've actually lost confidence in the GP's. Im looking forward to the appointment tomorrow hopefully will get a new set of inhalers to try...i just need the right combination. Think i took a risk in stopping the medications (ie. accolate) but i think its the bircanyl that is giving me a big part of the side effects.
besides i still havent got my voice back from when i lost it 4/5 weeks ago.
wow..now thats a Doctor.
hi just wanted to let you know that i had a really good check up and this NHS Hosipital Doctor was so good im amazed. She switched my reliever from the bircanyl to a ventolin accuhaler.
Everything else is the same I was told to keep an eye on the peakflow more than i currently am and if need be to come back/go back and ask for the flixotide acchaler to be added on instead of resporting to the tablets.
It was really good to hear a doctor (espically not one connected to my surgery) confirm what i think was happening - I agree with Polly that not all GP's understand and take asthma seriously and I think when i saw mine at that severe stage he would just chuck antibiotics and accolate/singluair in the mix. It was great because i could tell she was calm thinking about what to give me and made time to explain my options.
My usual doctors have a 10 min dealine set before you even enter the room, if only i knew that she was here before.
Thanks all for your advice. i have my fingers crossed that the seretide combination works. Never heard of Flixotide but good to know that alternative is there.
That's great news!
Regarding Flixotide ... Seretide is a combination inhaler containing a steroid component (flucticasone) and a long acting beta-agonist or LABA (salmeterol).
Both are available as single ingredient inhalers or accuhalers - Flixotide is an orange inhaler which contains flucticasone, and Serevent is a green inhaler which contains salmeterol.
Adding Flixotide enables the amount of inhaled steroid to be increased as needed.
hi ginny,
I was so relieved to have someone who was on the same thought process as me. Im one of these people where i dont get sick often but when i do - its a full force immune system down! And my asthma is as stubborn as I am.
I just thought finally there must be something I can have to beat my asthma into line. I think for the first time i could really explain how its taken over my life. Im not so observant of what the doctors give me all the time but this experience has opened up my eyes. Im glad i came here and that I did the research because I was just close to taking it for granted that the old me was long gone.
knowing about flixotide is blessing in disguise as im not scared or paranoid about another flare up anymore.
Ginny has described my medication procedures to a T. I regularly take seretide, but during exacerbations have a separate flixotide to increase the steroid dose.
Ventolin + seretide
Its great to know there is an alternative. i think its interesting and sad as it shows my gp doesn't have a lot of interest in asthma.
what surprised me how many errors were made and i still did not get referred to the hospital where this doctor was from.
woody/ginny what is reliever are you using?
confused:
I use ventolin/sabutamol as reliever, then Seretide and Flixotide (which I requested last year) as preventers and montelukast which again I asked for to solve exercise induced asthma. All of mine are pMDI(evohaler) and are used with a Volumatic spacer, again I'm afraid my own decision.
I have my annual review next week with the nurse and I'm going to ask for seretide to be split back into the separate inhalers. I want to try an manage through the summer without the salmeterol if I can.
Something you'll learn over time is that asthma is something you live with, and learning what treatments are about and recognising your own symptoms are the key. Then you can start to ask the doctors for various things, if only to try.
woody good plan..
Hi woody,
i now think im close to getting the right match, its been day one of the ventolin and to be honest the little irratating things like the minor wheeze and chest spasm feeling are a lot lower. I think i need to follow my instincts more. I was told to see the good asthma doctor in a months time and im thinking that i might request flixotide as a extra tool so to speak. Im on 200mg Ventolin and 250mg Seretide..and nothing else [apart from antihistamines and a new nasal spray!] slightly scared of a flare up but that is me trying to get over this phobia of getting sick (does this make me a hypercondriac? What is the opposite of hypercondriac?) I think your right about having the courage to test out what your asthma is like and knowing what tools to use.
It also doesnt hurt to do research i didnt know that ventolin/salbutamol was available as a Dry powder accuhaler (im allergic to the CFC type - what can I say im a senstive soul!) and I knew my regular GP's are getting it wrong.
Montlukast was great for me until the damn side effects kicked in - the 5mg chewable tablets gave me mouth ulcers! Im frustrated and angry at the regular GP's because im well enough to get on the net and research for myself and im just realising how they got everything wrong..can be good to get dragged to A&E..and meet a paramedic who was the Asthma genius!
Good luck woody with your check up! Im going back in a month because my other trigger is approaching...Hayfever...(Doh!)
My reliever is a Ventolin Evohaler (salbutamol MDI) which is sometimes used with an AeroChamber spacer. I have a personal preference for aerosol inhalers over powder ones as they are easier to take using a spacer during exacerbations.
It sometimes takes a bit of trial and error to find the medications and devices that suit you best, but hopefully you'll start seeing better results with the Accuhalers.
Edit to add ...
If it was the chewable-ness that was behind the mouth ulcers, montelukast is also avalable as 4mg granules (to be swallowed or mixed with cold food) or ordinary 10mg tablets.
Ventolin + seretide
im a glad to hear there is another type of singluair out there as i still might need to go back on them as it worked wonders on my sinus infection that i had mid flare up.
does anyone know if there is a peak flow graph chart i can download from here? i think it might be worth keeping a record to assess whether i need to add flixotied and singular back in.
@confused.
If you don't mind being a bit of a computer geek, I use this asthmaassistant.com/ and take the laptop/netbook to the GP/asthma reviews. more data than they normally get which is probably why they listen to me and not ignore my
its the only way to do it.
hi woody, that is the only way to do it actually. i was so prepared for this check up that by the time i was there it was me super focused.
shame i was never like this all those years ago when they failed to get the diagnosis right. but its left me annoyed as im the now being told its chronic asthma. thanks woody!
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