Severe COPD sleep disorder and anxiety

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Can anyone help please. My partner has very severe COPD and is on medical oxygen 24/7. Everytime he wakes up from a sleep he is extremely anxious and feel really poorly. He wears an oximeter watch with an alarm on, so it's not due to his oxygen dropping below 88. It's just getting worse and worse I'm at my wits end with worry

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  • Posted

    Hi, My husband was exactly the same as your partner, on 24/7 oxygen and all medication known to man,he also had an oximeter on his finger all the time. He had severe COPD, and was very anxious and frightened on waking up from sleep and frightened of being on his own, even when I was in the next room.  I lost three stones in weight and the specialist thought I had cancer, my sons stopped with my husband whilst I went for tests, it was stress that caused the weight loss.  I then started having chest pains and again it was down to stress, so I I bought some re-chargeable walkie talkies and things improved, he wasn't wanting me all the time, because he knew I was at the end of the walkie talkie.

    He pinned it to his top and I pinned one to mine, he could contact me wherever I was in the house and when he said 'help me' or 'can you come now' I could be there in seconds and you would not believe how that helped him.  Your partner will want the same as mine did, peace of mind and not feeling alone and frightened when you leave the room, even if it is only the room next door.  If I was making a meal I would just press  the button and say ''are you okay' and it got to be a joke, we even had a call sign, father-ship to mother-ship and vice versa. If he wanted a paper, magazine or anything at all he would just say, the next time you come up will you bring so and so.  The walkie talkies made him content and relaxed and that helped him with his breathing as he wasn't tensed up all the time.  I know how hard it is for you, my husband started being ill 8 years ago, just before he retired at 60 so we did not have much of a life after that, all I could think of was thank god I am fit and well, even though I was a few years older than my husband and that I had retired earlier and was able to spend 24 hours a day looking after him.  If I had been younger than him and had to work I honestly do not know what we would have done as like I say, he was terrified of being on his own, even when I was in the next room, he had to have the comfort of being able to contact me and me being there in a second and that is why the walkie talkies were a godsend.  I am sending you all my very best wishes because no-one knows what it is like unless you have been in this position.xx 

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    • Posted

      Thank you Sheila, yes I too am a 24/7 carer. We do sleep together and I spend most of the time sat in bed with him now so he is not on his own, but his anxiety is so bad. He takes lorazepam and oramorph and occasionally diazepam too. I don't know what else we can do. It's a horrible disease. You are right nobody knows what it's like unless they have been in the same situation xx
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  • Posted

    Debkyn, is he laying flat or propped up?  With my severe COPD, I cannot lay flat.  Also, when I awaken because I feel suffocated And panicked,  I do a breathing treatment and I practice deep slow chest breathing to relax.  

    For me, the suffocation comes on because of shallow breathing while sleeping and I am not blowing out all that I have breathed in anyway because of the COPD.

    So I force it out by exhaling using my diaphragm as long as I can no matter how loud it sounds or how difficult it is to do.  This can be done right before inhaling my life saving inhaler, or during my breathing treatment.  Then the medication goes deeper into my lungs and then I hold my breath and count to 12 to hold the medication in the lungs then exhale.

    Once I do that a few times I begin to relax and can go back to sleep or continue on with my day.  Learning breathing techniques is crucial with COPD since our lungs cannot do normally on their own so we have to do it manually.

    Also it helps me to stay away from dairy products because they create mucous which is the enemy to COPD.

    I wish you both the best

    Dawn US

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    • Posted

      Hi Dawn, thank you for this advice. He does try the diaphragm breathing but he does find it difficult when he is in a state of panic. We will try and cut down on the dairy products to see if that helps. Wishing you all the best. Are you on Daxas. My partner went on it 3 years ago and it has cut his exacerbations down a lot xx
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    • Posted

      Yes it is really hard to force control over your breathing when it is so out of control.  I also visualize my happy calm place while trying to gain control.  If just plain blowing out is too difficult, which of course it IS, then trick yourself by singing, or just let out one note for as long as you can.

      Manual massage of my head, neck and back helps me relax also.  Hot steamy showers and drink lots of water.  Nice hot herb tea with valerian root and chamomile relaxes too.  

      I was born with sick lungs and only function at 30% lung capacity.  It is permanent.   Oxygen does not help me.

      I use Singulair, SPIRIVA inhaler, BREO inhaler and Pro Air rescue inhaler.  Use DUONEB in my breathing treatments.  I also take a 50 milligram of Amitriptyline to help me sleep.

      Dawn

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    • Posted

      Forgot to add that hot coffee Can help me breathe better too.
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  • Posted

    It's so hard to explain to those not in the same situation, we have sympathy and empathy for the sufferer because they are feeling the most pain, being suffocated 24 hours a day is not easy , but suffocation works both ways. Have you considered single beds or maybe moving to another room close by, your close presence and your own anxiety can be infectious. You can use baby monitors to hear if he needs you , it's a big step , but isolation can bring a little bit of independence on both sides.
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    • Posted

      Well said Trevolone.  One time the biggest best pulmonary specialist in my area, after I described my severe asthma and COPD as feeling" suffocating", he told me that I was exaggerating!  

      The point you make about allowing some separation, feels spot on for me because I prefer to not visibly suffocate in front of others, at least not in my worst struggles.  I cannot focus on calming down so that I can assess if I need to go to the hospital or not when someone else is around, even if I love them and know they love me, because I do not want to scare them and I worry about them instead of myself.  COPD is like a war.  Constantly trying to stand up to it so it will not win and steal every bit of joy left.

      Make sense?

      Dawn

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  • Posted

    I've been on a 5 year journey with this....not knowing what was causing my copd...but now I know my problem is specifically mold in my lungs which is actually much more common than people realize, and is rarely diagnosed by doctors. Mold is sneaky and difficult to detect in homes, workplaces, barns, etc. but many people with copd symptoms have actually had either a long-term exposure to hidden mold, or have been subjected to massive amounts of mold spores in just one or two events.  Before it was determined that this was the problem, I eliminated all the usual food suspects that cause allergies (didn't help me), had no animals in the house (didn't help either,) and took massive quantities of supplements that should have helped relieve allergies (that didn't help much either), although I do take supplements to support healing such as a top quality vitamin/mineral (don't take brands sold in stores...ask a naturopathic md. I don't think I'm allowed to mention the brand I use here but you could send me a message)  beta carotene, omega 3, probiotics, b complex, alfalfa, coQ10, NAC which is n-Acetyl-L-cysteine, olive leaf extract, and artichoke extract.  I've heard that L-gluthathione inhaled thru a nebulizer is very helpful.

    NOW....what I have discovered that has helped me the MOST...is going off sugar and carbohydrates. It sounds radical, I know. And at first I was not willing to give up my beloved sugar and carbs...but, once I researched it more, and read testimonies, I decided to give it a try since nothing else was helping. I decided against traditional drug therapies because they treat symptoms but do not target the cause. One of the most powerful testimonies was by an engineer who cured his mom who was in stage IV (that's pretty much the end of life stage) by completely changing her diet eliminating sugars and carbs. I was desperate, since I am in stage III. After 2 weeks, I noticed a significant change in the reduction of my symptoms (ie. previously I would spend 2hour sessions coughing up alot of congestion in my lungs 3x a day) sometimes longer. That was 6 hours lost out of every day of my life. Exhausted, unable to function, my quality of life was quickly deteriorating. I was taking between10-20mg prednisone and 4-5 bronkaid (ephedrine) tablets a day. Now, after 3 weeks consuming  no refined sugar (limited natural sugars in fruit...only 1/2 of a fresh fruit a day) and very limited carbs, I have NO MORE coughing fits, and only take 1 bronkaid (if needed), was able to get down to 5mg prednisone, and now I have just started my first week on no prednisone.  Whenever I do feel the need to cough, very little comes up out of my lungs. This is remarkable! I had no idea how toxic sugar is to the body. I know it sounds impossible...I thought so too, because I'm a sugar addict. But I found many substitutes when the cravings would hit.

    There are many other herbal supports for copd. The American Association of Naturopathic Physicians can help you find a practitioner in your area. ( I found one thru this site).  A physician practicing holistic & naturopathic medicine seeks the CAUSES of your illness and works to target the cause rather than simple treating symptoms with drugs. If you have trouble clearing the congestion from your bronchi, there is a device called a lung flute which uses sound waves to dislodge the stuff and helps you cough it out easily. My dr. wrote me an Rx for it and so I am going to try it as well.

    Another helpful therapy is the Buteyko method of breathing. Find this online and on you tube. Watch several...they all have unique tips to share. This has also helped me alot.

    I hope this is helpful for you too!

     

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