Old 06-07-2016, 07:13 PM #1 (permalink)
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Default Breathing Anxiety

I have bulbar and was diagnosed 18 months ago at 60. I have no trouble walking or using my arms and have limited use of my hands, but they are still somewhat functional. I can't speak or eat and use a peg. I have been using the trilogy unit at night, but it seems my lungs have recently deteriorated to the point that I need to use my bipap unit during the day. Struggling to breath during the day creates an uncomfortable level of anxiety that I don't know how to fight. It appears I have a few choices, continue to use the bipap during the day or increase my dose of Lorazepam (Ativan) to alleviate the breathing anxiety. I have opted not to go with a tracheotomy, but it seems I am getting pushed in that direction. My doctor says we should call hospice to get things set up. Since I can still walk that seems premature. I'm lost what to do from here. Day and night with a mask doesn't seem like a good option either. Any suggestions?
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Old 06-07-2016, 07:25 PM #2 (permalink)
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Default Re: Breathing Anxiety

What are your respiratory numbers?
What about trying nasal pillows during the day for bipap?
It can happen that bulbar/respiratory people maintain limb use until the end so walking and hospice are not incompatible
I am really sorry you are struggling. As you know anxiety medicine will not really help your breathing although it may calm you a bit
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Old 06-07-2016, 07:41 PM #3 (permalink)
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Default Re: Breathing Anxiety

I am not sure of my respiratory numbers, the doctor says that my lip seal around the tube would not be good so there is no need to run the test. I'm guessing about 35 to 40% lung capacity. I have tried the nasal pillows and my cheeks blow out. I guess i could try a trac for a while and when i get to the point i can't move terminate at that point. It is a challenge of decision making. Thanks for your thoughts.
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Old 06-07-2016, 09:50 PM #4 (permalink)
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Default Re: Breathing Anxiety

Hi JR. I'm sorry you're facing these difficult decisions. My dad also had bulbar. Even though he tried not to show it, I know he struggled a lot with anxiety. He didn't want to be "dependent" on the bipap so he went without it during the day longer than he could comfortably tolerate. He was also resistant to meds.

I tried to help him by using relaxation techniques. When he would get anxious, I would get him to slow his breathing by counting back from ten, put on headphones and listen to music.

As things progressed, we got palliative care to come in to see what comfort measures they could provide. Hospice came in when my dad was still walking and getting around. They didn't require him to be housebound to receive care so he was still going to the store and out to eat.

Hospice will be able to provide morphine, which in small doses, will ease the air hunger without knocking you out. My father was able to take a small dose for quite awhile before needing to have it increased and it eased the anxiety considerably.

I hope some of this helps.
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Old 06-07-2016, 10:24 PM #5 (permalink)
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Default Re: Breathing Anxiety

JR,
Have you tried a sip 'n' puff setup? Could use a portable machine from a hip pouch, backpack or attached to a rollator, for example. Just attach a 22mm mouthpiece to your hose. (Or can try a 15mm hose/mouthpiece for less bulk).

Not sure how a trach would help your present situation since you would still be attached to a vent and walking would be more problematic with the stoma. When you are still at the discretionary BiPAP stage, my first move would be to make that easier, and it could potentially last you for a good while.

Best,
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Old 06-08-2016, 08:18 PM #6 (permalink)
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Default Re: Breathing Anxiety

Thanks for your thoughts and suggestions, they will help me develop my plan moving forward. The plan always changes as time passes....its kind of a moving target.
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Old 07-05-2016, 06:44 AM #7 (permalink)
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Default Re: Breathing Anxiety

JR my situation is very similar to what you describe and the doctor and I have had the same discussions. The main differences would be that I do not use any medications and instead of bulbar had respiratory onset.

Like you I struggle to breath each day and do not want to use the BiPap during the day unless I am napping. I have decided that I will not vent. For me this is mainly due to the high level of maintenance and my desire to try and make my wife's life as "easy and convenient" as this disease will allow. So I guess in a nut shell that is my "plan".

I would say that whatever you decide that your "long term" goals are for the days you and your family have left will determine what options you take. These are the hard decisions, but are independence in making these decisions, is the only way we have of fighting this disease.
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Old 07-06-2016, 08:23 PM #8 (permalink)
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Default Re: Breathing Anxiety

My husband was quite comfortable using his trilogy at night for a long time. He did use anxiety meds but that wss for panic attacks and anxiety he had before his dx. Als made it worse.

I feel Pete is right. You have to decide your course of care. My husband was respiratory onset and walked the day he died so walking isnt necessarily a sign you are not progressing. If using your bipap in the day helps, do it. If meds help, do it. Whatever makes you comfortable. It is different for everyone.
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