Carers' Forum

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ancientbrit replied on 09-28-2010 9:30 AM

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I can't see how to post a new item, so I guess this must be the way as a reply.

My wife and myself are 73.  She has had copd for many years.  She suffers from almost continous headaches due to carbon dioxide retention, and the prescribed paracetamol don't seem to help.  I wonder if anyone has tried anything else that helps.  We haven't yet tried other meds because we are told they will damage her breathing!  But, perhaps it may be worthwhile to try, she is so poorly.

She is on an oxygen concentrator full time.  We have the small cylinders to go out with and a wheelchair and battery buggy, but she hasn't felt good enough to leave the house for a year now.  

I went to the doc about myself one day and asked if I could discuss my wife, she pulled up the info on her computer screen and said, "It's amazing she has lived so long with her condition, it's thanks to the correct medications and your (me!) nursing."  That's an indication of how poorly my dear wife is.

So, has anyone tried any other headache remedies with any success?

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markpilling replied on 09-28-2010 10:18 AM

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Hello

Welcome to the forum - reall sorry to hear about the tough time your wife is having at the moment.

Has your wife asked to be referred back to her consultant or a respiratory team - so that they can look at doing something about her CO2 levels. Another issue would be to have her oxygen reassessed and make sure she is on the right levels. It is difficult for us to comment in any detail but I have checked with a colleague who says there are things that can be done to address high CO2 levels. As your wife has discovered the paracetamol won't touch the pain she is experiencing - she would be wise to speak to someone before considering any other pain relief.

I really think your wife needs to have the treatment of her COPD reviewed, and ask her GP to refer her back to the hospital etc. Give us a call on 08458 50 50 20 if you want to discuss this in more detail.

Let us know how your wife gets on

mark

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ancientbrit replied on 09-29-2010 9:39 AM

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Hello Mark, thanks for your reply. (The email notification did not function, just found your reply by chance visit.)

She refused to travel to a London hospital to be assessed three years ago, and I agreed with her due to such a trip being impossible for her as she is, even worse since then.  She said she would not wear a noisy gadget which she was told she would use at night!

Three years ago, the specialist said he did not need to see her again as she is now stable; unless she asked to see him.  Her sats without oxy are 81 and with oxy @ 2L a minute are 95 - but I guess ageing is not helping.

I think the best course would be to get her doctor here to discuss, I can't see her being able to even go to outpatients to the specialist.

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Mick replied on 09-29-2010 8:08 PM

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Hi. Mark - About 2 years ago my sats were 74% and I was diagnosed both as COPD and a 'retainer'  My GP together with my repiratory team gave me a BiPAP and prescribed 15/24 usage.  The aim was to 'flush' out the excess CO2 and it worked. I am now on the BiPAP overnight with 02 attatched at 2litres pm via a concentrator and I am convinced it has given me an extended life. I have portable cylinders if required for use during the day which are renewed on request by Air Liquide.  My respiratory team Nurse visits at least once a week and I feel very lucky when I read of some of the Forum members problems.  Good Luck - Paramedic Mick

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ancientbrit replied on 10-01-2010 9:12 AM

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This is an update of my previous posting.

Our doctor came and his opinion is that she is at a stage where no medications for her breathing will work now.  It is the oxygen that is keeping her going.

However, he said that whatever she wants, let her do it.  Also, she can only use paracetamol for her headaches, it is the safest, although he doubts it does much good in her case.

She has a chest infection and is now on antibiotics for that.  So, although I realise she is an end stage patient, we are hoping for a little improvement within a week or so.

I asked about the Bipap treatment, but my wife says she'd never use it!

So I guess I have done and said all I can do.  I'll just continue with my loving care and nursing for her.

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Mick replied on 10-01-2010 8:25 PM

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I originally felt the same about BiPAP but when I put it on it was a different world - breathing at last (although assisted)   I have never looked back - please try BiPAP   -   Good luck - Mick

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rita replied on 10-01-2010 10:18 PM

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Hello

So sorry to hear of your wife's condition.  However like Mick I was put on Bipap last year having been rushed into hospital with severe breathing difficulties and the relief I felt was tremendous.  I did not have to expend energy breathing and I was on it for about 4 days.  Please, please, try and persuade her to have it, it may even help with headaches as it drives out CO2.

Take care

Rita

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fnsammy replied on 10-19-2010 7:17 PM

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Hello,

I am looking for other carers in particular copd carers but any advice, support or friendly words from other carers would be appreciated

Hope to hear from someone soon.

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rita replied on 10-19-2010 10:37 PM

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Hello fnsammy

Welcome to the forum - how can we help?  Most of us are either carers or sufferers so may be able to offer advice based on our own experiences and certainly friendly words and support!  Do also call the help line during the day time 08458 505020 between 10 & 6 as they very very good and it's nice to speak to a "voice"!!

rita

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arrian replied on 10-19-2010 10:58 PM

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hi, fnsammy, i'm a carer for my husband Harry, he has emphysema. any help and advice i can give, or just a few words of comfort if you're feeling down, i will.

i'm having some problems with my laptop at the moment, and also we're off to Scotland for a few days, but when i'm up and running again, i'll help if i can, (or just chat, lol)

Arrian xxx

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fnsammy replied on 10-25-2010 7:28 PM

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Hi,

Thankyou for your support, it is much appreciated!

Need some thoughts/opinions...

Dad speaks like he is going to get better and he will be able to do things again but he is unable to do most things even needs assisstance with dressing most days ( I know there are good times and bad times). He does say he knows he will die younger than he should as in not living to a "ripe old age". Sometimes it seems like denial but also seems to realise that he won't live forever. I'm not sure if he fully realises how he is or if he is in denial......

Hope this makes sense

Any feedback is welcome

fnsammy xx

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harry replied on 10-25-2010 10:52 PM

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Oi.Sam, would Dad not get into this “internet malarkey ?”

Slug is pushing 65 and he has the world at his fingertips, although he is “housebound” most of the time...............

       ...................

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Lorien replied on 10-26-2010 7:25 AM

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Hi Sammy,

Your dad is right in one way; with some proper treatment he will get better than he is now.  Just two or three months ago, I couldn't dry myself after having a bath.  I couldn't climb the stairs without real breathing difficulties.  Going out was becoming a rare event because I just couldn't cope with the stress and breathlessness of getting dressed.

I'm out every day now and I don't even think twice about going in the bath or up and down stairs when I've forgotten something (again!!).  You didn't say what age your dad is?  Also, he might have depression now, I know I did when I was in that situation.

He's so lucky to have you, Sammy!

Best wishes