Old 01-04-2013, 06:09 PM #1 (permalink)
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Default Night Time vs Day Time

I am curious if this is common but night time things get really ramped up. Breathing is harder, swallowing, fasiculations kick in to high gear. I am not sure if it is the disease or methadone withdrawal but nights have become a bit apprehensive for me.
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Old 01-04-2013, 07:38 PM #2 (permalink)
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Default Re: Night Time vs Day Time

Did you abruptly stop with the methadone?


Did you ever have the sleep study to see where you were with the breathing? I'd suggest for now sleeping with your head slightly elevated.

As for the pain medication--if it helps, by all means -- take it!

If shortness of breathe becomes severe--please go to an ER. Make sure there is no pneumonia or something going on.

It's a shame that you're in a box where help is so seriously limited for you.
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Old 01-04-2013, 07:42 PM #3 (permalink)
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Default Re: Night Time vs Day Time

As soon as I settle into bed, I become much more aware of the fasciculations. It's really irritating isn't it? Sometimes, I count them like sheep if I can't sleep. My breathing is affected as soon as I lay down, so using extra pillows to keep elevated, and that is really helpful. (As is a puff of ventolin once in awhile)
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Old 01-04-2013, 08:00 PM #4 (permalink)
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Default Re: Night Time vs Day Time

I have just started taking melatonin ( a month back) it helps -does not stop night time fsculations/cramps (my left arm has gotten alot worse so turning isnt so easy either) and like you ottawa i sleep with more pillows these days ... but wow im going hands up too melatonin i started on one tab a night and now increased to two - so 4mg a night which i understand is low? Anyone else here taking melatonin to improve the nights sleep ... and wake up feeling so much better I also notice the more 'physical i am during the day the more muscle trouble i have at night - so pacing oneself is important ... who knows?
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Old 01-04-2013, 08:02 PM #5 (permalink)
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Default Re: Night Time vs Day Time

Do you use BiPap at night? It's use can greatly improve your sleep.

Are you being followed by a respiratory therapist at an ALS Clinic? You should have pulmonary function tests regularly to monitor your respiratory status. The RT or pulmonary doc can make recommendations based on these tests. Many PALS have difficulty lying flat as the muscles that help with breathing deteriorate. Many use adjustable beds so that the head of the bed can be elevated to a comfortable position to improve breathing.

I find I sometimes "dread the bed" now that I'm no longer able to turn over or manage the covers easily. I have a wireless doorbell within reach to call my CALS should I need assistance.
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Old 01-04-2013, 11:08 PM #6 (permalink)
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Default Re: Night Time vs Day Time

I have lost all intercostals and pecs plus diminished diaphragm. Lung capacity is excellent so insurance won't approve Bi-pap or IPPB. Slightly dismissed laying down but they need to experience that horrible feeling of suffocating. I am being seen by the best neurological pulmonologist in Dallas. He noted I present as a thoracic paraplegic but that isn't enough for hospice or insurance. I just don't get it. Getting off hospice and going to home health care next week I hope. I can lay down on the couch but the bed causes the muscles in the back of the neck to just flutter if that makes sense. Hospice insists it is the brain stem and autonomic nervous system from my head pressing down on the brain stem.

I tapered down on the methadone every three days for a couple weeks. Should be done in a week.

Also have a tumor in my parotid gland in the left cheek getting them to check it again since it keeps growing. As my wife says...it never ends. As I say it doesn't end till its over. Still living life LARGE and enjoying it!
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Old 01-04-2013, 11:36 PM #7 (permalink)
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Default Re: Night Time vs Day Time

Though I don't have a diagnosis, my neuromuscular condition affects my breathing too, especially when lying down. For a while, a few extra pillows did the trick but as things have progressed, I've graduated to sleeping sitting up. I'm going recliner shopping this weekend so I can move back into my bedroom and off the couch. If you already have such a chair, give it a shot. My change in sleeping position brought me significant relief and increased daytime energy for months. Those benefits are starting to dwindle for me as of late, but I'll be addressing that at my pulm visit this Monday. I hope you found this useful.
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Old 01-05-2013, 08:56 AM #8 (permalink)
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Default Re: Night Time vs Day Time

Very useful indeed Luke! Thank you for taking the time. Shopping for a recliner with a laptop/iPad tray soon myself. Need my head back to protect my cervical spine.
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Old 01-05-2013, 10:18 AM #9 (permalink)
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Default Re: Night Time vs Day Time

uptown if you r looking for a laptop stand for a recliner check out airdesk. lov mine
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Old 01-05-2013, 09:44 PM #10 (permalink)
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Default Re: Night Time vs Day Time

Should I worry about the back of the neck going from fasiculations to "flutter"? Hospice says end stage of motor neuron disease butnindont know what to believe with them. They are trying to talk me into staying in hospice because it will be over soon. My whole outside of head is going numb and my left ear. The insist brain stem is going but who news. I don't know if I am in denial or just feeling good on my way out.
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Old 01-12-2013, 09:18 PM #11 (permalink)
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Default Re: Night Time vs Day Time

That sounds more positional than "brainstem." Does it worsen/become noticeable when you lie down/wake up/change positions? Could it be referred pain/numbness from your L parotid tumor?
As for BiPAP, would have pulmonologist write letter of medical necessity/have office staff follow up w/ medical director's office and have your ALSA contact call the carrier as well. Also, tell the carrier you need a case manager. The more they hear "ALS," the more likely they are to approve things. But even if you can't be reimbursed, if you need it, you need it, and you can get used/new machines from SecondWind.
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Old 01-17-2013, 12:07 PM #12 (permalink)
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Default Re: Night Time vs Day Time

Saw my cardiologist about the blood pressure problems, the breathing and gasping for air. His response was like last summer. He is totally amazed at this stage of advanced motor neuron disease that I can still drive. He said no reason to check your heart again since nothing would make it fail based on the tests last summer. Good news but yet another doc telling me the disease progression is rendering me unable to sit up for long, losing my swallowing and breathing capabilities because the autonomic nervous system is failing. I have gained 12 lbs since September, walk a mile almost every day, do all the cleaning, shopping, cooking. I am now losing part of my voice with a certain range gone as if a strand of muscle fiber just stopped working. It will be a week tomorrow.

Now on to further investigate some potential cancer metastases in my cheek and lymph node under my chin. Someone asked me when will it all end. My reply was when it is over. For now I am just Standing on the Promise!

My aunt's Bed and Breakfast in Chile burned to the ground a couple days ago. Everything gone in 15 minutes. How devastating.
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Old 01-26-2013, 06:03 AM #13 (permalink)
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Default Re: Night Time vs Day Time

Some diseases have a trend to be bitter at night. I think, yours is the same.
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