We're at wit's end from lack of sleep!

What a horrid situation. I think you need to talk to the medics.

Quick reply:
You need proper medical and / or nursing advice about the medication
Can you afford any help, cleaner or carer who can help you through this? If not, request an assessment (try through your GP at first as the organisation varies geographically)
Can you afford a bed with electronic risers? I have one from when I had joint replacements done.
I hope you can sort something out

Try and bring your next hospital appointment forward, preferably this week. Hope your DH gets well soon.

Phone the secretary of the consultant at the hospital and explain the situation, s/he will be able to discuss and get back to you probably with an appointment.

I’d go back to your GP, both of you. I’d put it to her/himin very strong terms that despite what they say or test results show all is not well.

You need to stand your ground and insist your DH gets help as this is not doing his health any good. Be polite, strong and insist. Don’t be robbed off.

All is not well indeed - poor chap; and poor you.

My OH has AF sometimes and always sleeps sitting up. He has been issued with a hospital bed that you can alter using a switch. He also has PD and this helps him to move around in bed, which he cannot do by himself.

But being able to angle the backrest so he can sit up and lie back at will has improved his sleep. He also takes a lorezepam at night to help him sleep.

Hope that there will be some improvement for you.

In the short term - Is there a relative or friend who could sit with your DH for a few hours during the day time while YOU get some sleep? It will be easier to cope if you have had a decent sleep yourself

This is a stessful and unpleasant situation you are in to say the least. Definitely speak to your GP or hospital Doctors about this as seeking advice from non medics has already raised your level of concern. Big hugs x

If you don't want to change the bed, you could have an electric lifter under the mattress to get the best angle.

May I suggest you book an appointment with your local pharmacy so they can go through the medication with you and can talk about better solutions. They can be much more knowledgeable than doctors when it comes to the best way to help the symptoms.

My experience is that if you do not push and pester your GP, they will do nothing, just fob you off. So you have to gather every strength and just push them

That's not how it ought to be or used to be, but it is how it is now.

My DH suffers with AF. It's never been suggested to do anything to to fix this although he is on water tablets and blood thinners. He bought himself a reclining chair and sleeps in this in the living room. This suits us as we keep very different hours.

Been through all this sort of thing with my late DH - for eight years . Separate bedrooms and a very comfortable electric reclining chair helped us cope.

When you say DH sleeps in a chair, is it a recliner? I have two friends who can’t lie down, one of them with lung cancer and the other COPD and they both say they sleep well, almost sitting up, in their recliners. If you have space it could be a cheaper option than changing the bed.

Good luck with the GP. You both need to be listened to.

Sending best wishes. Not being able to sleep is miserable.

You may well have a case for a hospital bed which your DH can borrow. Ask to have an Occupational Therapy assessment so you can ensure your DH can get a good nights sleep. Sleep deprivation is used as a form of torture for very good reason and makes everything feel insurmountable.

willa45

A very sad situation BUT...I think you should be asking the professionals, not us. There will be many on here who have or have had people they know with some of the symptoms you mention. That does not qualify anyone to give recommendations on such a serious issue, especially if it's at odds with your own GP's and the hospital's advice.
A little knowledge can be a dangerous thing.
The only thing I would say, is to re-visit your doctor and insist on a referral to a chest specialist asap.
I'm sure that your husband's discomfort is impacting on your own health and, to that end, you need this problem sorting out right away and a diagnosis and medication plan that improves his health and your peace of mind.

I agree with you OldMeg.... get back to GP immediately... today or tomorrow... sit in the waiting room for an appointment if you have to... and talk this through ..
Just a thought ... do you have anyone younger fitter less tired who can go with you for support?

Years ag I had very bad gastric reflux and had to sleep sitting almost upright. My husband and I tried everything. To raise the head of the bed but there was one fundamental problem. If only the head of the bed is raised you slip downwards as you are sleeping and spend the night mountaineering up the head end of the bed.
Our final solution was an electric bed. The difference is that with the head and foot raised up it’s like lying in a cradle. No slippage. There are a number of very expensive electric beds on the market but we went to Archers and bought a cheap one. It’s 10 years old now and still going strong. The strange thing is when you are lying on it raised, it feels like a flat bed! I can’t explain that one. ??

I have AF and am on meds and blood thinners but don't have any of these issues. I agree with Gabriella and the others that you need to revisit the medical profession and OT for proper help for your husband - emphasise the impact it's having on both your lives. The rise and fall bed may indeed help - a reclining chair is ok for short term but not very practical or as comfortable as a bed (slept on one for a fortnight once with a bad shoulder). I hope you get some help quickly as you can't go on like this.

If DH needs to sleep more upright how about getting one of those beds where you can raise or lower the mattress with a button. You can get them for a double bed but have separate controls...as for the water pills I have no idea sorry

I use a foam rubber bed wedge, which lifts up the upper part of your body about 1 foot above the rest of you. It has cured my sleep apnoea . If he can't lie down, one of these wedges is a cost-effective option to relieve breathing problems.

If you aren't happy with your GP and can afford it, you could make a private appointment with the consultant you are under. It isn't cheap but you get undivided attention and it may sort all your worries.

Ask for a 2nd opinion with a good cardiologist.

So sorry to hear what a horrible time you and your DH are having.
Please do follow the advice to talk to your GP and try also to get a hospital appointment soon. Ask both your GP and the consultant to tell you if all the medication your DH is taking is necessary and IF it all works well together. Sometimes problems are caused when a doctor prescribes something without knowing what else the patient is taking.

When you have had some sleep and are up to it, try the charity shops that sell furniture and see if you can get a bed that can be adjusted easily for DH.

Get onto social services or CAB and find out what help you are entitled to - you surely must be entitled to some kind of help as you are your DHs primary carer!