Hi All, I too have only just been told that I am a CO2 retainer! No instruction on how to deal with it though.
Mine involves terrible headaches and not sure if the shakes are from this or the nebulisers which I also react to.
I have had infection after infection since October and recently 2 episodes in hospital one before xmas and last week. Not only got COPD but also bronchitis’s (I hope that how you spell it). Any info on how to deal with this would help x
The headaches are a bi-product of CO2 retention I'm afraid, but I can't understand why you've been told you are a retainer and no further treatment. Once I was diagnosed I was put on a BiPap machine at night. Was it your GP who gave you the diagnosis or a respiratory consultant ? Whoever it was I think you should go back to them and ask them to explain this condition to you thoroughly and then questiion them as to what treatment is available.
P.S. I was told that my shakes are due to the steroid inhalers I use.
I can't comment on the bronchitis I'm afraid as I haven't experienced that, but I do have COPD. Happily, since having the BiPap machine at home I haven't had one hospital admission and have been free of infections for almost a year now *immediately touches wood* 
Elian, next time you're reviewing your meds, see if they'll try you with Ciclisonide (Alvesco) as a steroid inhaler. I had lots of problems with various types, single and combi, before one of the nurses mentioned that one to the GP. He'd not heard of it.
hi I have a cpap machine I use it at night and having trouble with mask it makes a noise and wakes me up with the leakes any advice would be very helpful. Carol.
Carol / Robert try different masks until there is one that gives the best fitting with no leaks because it is not working when it leaks out. Have spare masks that can be changed over after an infection or it will be back again.
thanks amster will do Iv5 masks Iam going to practise with each one.Last night wore my swimming goggles to sto the air blowing in my eyes.they didnt work. carol xx
I have had that problem you can only tighten the mask a little to stop the leaks and the noise
Hi Elian, thank you for this info. It was my Consulatant that informed me and the Oxygen Assessment Nurse who gave me a card which I have to cary atround with me. I only saw my consultant on Wednesday and asked him the same question but was told there was nothing I could do! I have another apointment with the Consulatant in 8 weeks time but before then I am being assessed for Oxygen so I will also ask at that apointment also.
I find ventolin gives me the shakes. I now neb and inhale bricanyl which is better for me. Before I looked like Mrs. O in Acorn Antiques - set off with a full cup of tea and spilt most of it. Like Gordon I had probs taking various inhalers and my consultant put me on ciclisonide a while ago and it has been fine.
xxx
Hi Samjo,Like you I was also told I was a retainer,although nothing done about it.Have now been told I am not,and probably was because of being very unwell at the time!!
I take spiriva, onbrez,and symbicort as puffers,and find they work very well.Ventolin was not much use to me, besides giving me the shakes!!
Cheers Wendells xx
Hi Samjo, I have has 2 emergency admissions to hospital re CO2 retention, each time was put on a Bipap. The copd respiratory nurse gave me breathing exercises to do, involving belly breathing, huffing, clearing chest. Don't know it that helps to clear CO2. I find nebs and over use of ventalin inhalers give me the shakes. I am waiting to see the consultant. I am going to prepare a list of questions, you guys out there really help. Samjo I suggest you do the same, we need answers, after all it is our health!! Poll63
I too am a retainer and I have been given an emergency card to carry. Very important as on one occassion on an emergency admission to A&E I was given too much oxygen on the trip to the hospital as was put on the BiPap machine very quickly. As from June 2010 I have a BiPap machine at home that I use for a minimum of 8 hours a day so night time covers that nicely. Recently I found out that if I had been under my local redpiratory clinic I would not have this machnine as they don't do them in my area which is one of the richest counties! Luckily for me I am under a London consultant. This difference in treatment from area to area is what is so frustrating.
Hi Polly63 & eepee8
thank you so much for replying to this. Armed with this info I will now ask the question's from my Consulatant. It worries me that every one is treated in a different way yet we all have the same or similar problems! Maybe postcode lottery does come into it. Take care all of you x
Hi Wendells
thank you so much for this info. I seem to be using the same drugs as you so that is something in common. Maybe mine has raised it head again because of low oxygen levels and also the headaches as I too was very ill in 2007with similar problems, but why not informed till now not sure another question I will have to ask.
Take care x
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