Old 12-25-2017, 07:15 AM #1 (permalink)
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I have familiar ALS with the C9ORF72 mutation. Progression is pretty quick, since being diagnosed in February 2017 the symptoms developed from not being able to lift my right foot to the current stage of not being able to walk or stand, not being able to lift my right arm and hand and the onset of bulbar symptoms.
That said, my life is still pretty comfortable. I still eat what I want, struggling only with big pills. My back is killing me though. Because I'm constantly sitting my lower back is hurting when I stretch or somebody lifts me. I'm guessing the muscles are atrophied. However, using liquid painkillers helps me to sleep a few hours until I decide to turn to my side and suddenly find myself in an uncomfortable position. This then activates dark thoughts about everything. My life, my decisions, the things to come with the progression, what my girlfriend must go through and doubts about what happens to our relationship. I know that these thoughts are not to be taken too seriously but at night they are all I have. Apart from the fact that I am in some very complex, painful and unwanted Yoga position, I have all these thoughts and would just wish for a peaceful night.
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Old 12-25-2017, 08:16 AM #2 (permalink)
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Default Re: sleeping

When I first started going to my clinic visits (here in the USA we go to the doctors office and we see 5-6 doctors at once every 3-4 months. They range from neurologist to psychologist to religious counselors) they would always ask if I was "depressed". And I would always give them the same answer "of course I am, I have a terminal disease, I watch my body die daily, I watch my loved ones suffer, and this illness screws with my emotions, what the he11 do you expect". That of course lead them to try and "force" me to take anti depressants (please note that I do not judge people who do want them I just don't) etc..

In my opinion they were asking the wrong question. The right question is "what do you want to to with rest of your days and how do you want to be remembered?" For me the answer is that I want to love my family and be remembered for doing so. For me "to love" means to count them as more important than myself. So even though I am so dependent upon my wife for everything I try not to complain, not to upset her, not to ask her for things unless I have no choice, to help by ordering groceries on line, to help her with her work by offering any support I can think of. When I am asked by any one how I am doing I reply by asking how they are.

This takes a lot of effort and a lot of reminding myself of who I want to be, because it is so easy to feel sorry for myself. This illness sucks. In so many ways it seems unfair, and I am sorry for all the losses you are going through and will continue to go through. I use this forum to ask questions and whine at times, but I try to always put those nearest to me first. When the dark thoughts come I remind myself of who I want to be and what I want to be remembers for. Those thoughts are not consistent with what I want, to let them win is to loose against this nightmare.
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Old 12-25-2017, 08:36 AM #3 (permalink)
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Default Re: sleeping

Thank you. As soon as the sun comes up those thoughts are practically gone and replaced by more rational thoughts. I am sad yet not despaired, I cry out of physical and emotional exhaustion not because I'm bitter. So anti-depressants are also out of the question for me.
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Old 12-25-2017, 08:59 AM #4 (permalink)
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Default Re: sleeping

Hello there, there is two drugs that I take that help with sleep, Baclofen and Tizanidine. They are intended for stiffness and pain but really help sleep as well. I sleep good all night.
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Old 12-25-2017, 09:45 AM #5 (permalink)
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Thanks Al, I'll discuss those with my doctor.
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Old 12-25-2017, 01:24 PM #6 (permalink)
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Default Re: sleeping

Metronome-

Al has something there. You are not likely in need of anti-depressants as a first resort if you have a low mood. And Pete's right- you have a really good reason to feel despair and worry about your future. If it's debilitating or is completely intractable, mood meds are definitely an option, but that's between you and your doctor. I know a few people here find they are helpful and have found they are absolutely necessary to maintain relationships and to help with fear, anxiety and depression.

There are a few things you can try first to make you more comfortable and to gain you some restful sleep. Lack of sleep due to discomfort and inadequately addressed pain or spasticity issues can put you in a foul and hopeless mood. I am hoping your racing thoughts and discomfort would be mitigated if you had a decent and restful sleep. I don't believe people should be given anti-depressants as a first option when there are other things that can be done to try to help with a whole spectrum of things that can cause low mood. Again, that's for me personally- many others make the decision to take mood meds because it works best for them.

I can only speak for my experience here- I have dreadful spasticity and it was keeping me up at night. The lack of sleep affected my mood. It mostly exhibited itself with irritability (sometimes full rage) and lack of focus, feeling overwhelmed and zero energy/coping sklls. I worked for almost a year with a doctor (psychiatrist- so he knows his mood stuff) to find the right mix of drugs to help me sleep. I also use a BiPap which has helped with fatigue, headaches and grogginess. My cocktail is 12mg Tizanidine (muscle relaxer), 2 mg Benztropine (helps with spasms and restlessness) and 50mg Diphenhydramine (straight up sedative- also helps with salivation). I can get 7 to 8 hours of sleep, which is something I couldn't even do when I was well.

I am sure others can weigh in here with their solutions. Cannabis and Magnesium could even be considered "natural remedies"!

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Old 12-25-2017, 02:48 PM #7 (permalink)
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Hi metronome, I'm wondering if you are in a good hospital bed and if you are having any massage and ROM done for you?

It can take a while of working with good doctors and maybe OT/PT to get the right mix of physical equipment, positioning strategies, physical pain management strategies and medications for each person as the causes of pain in ALS can be quite different for each PALS.

I cannot even imagine what dark thoughts would go through the mind of any PALS that wakes in the night with pain and unable to move and alleviate that pain themselves. Many of the PALS here will be able to give you excellent examples of strategies that worked for them that may help you work towards your own solution. I truly hope so, this disease is cruel enough in the day without being awake at night this way.

It took my Chris a long time, even when he was still mobile to get the right mix for him to sleep well and it was a combination of a good hospital bed, electric hoist and me learning to position him well, and some meds.
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Old 12-25-2017, 07:47 PM #8 (permalink)
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Do you use a breathing machine at night? My wife definitely sleeps better since getting it and therefore isn't awake enough to get wrapped up in dark thoughts. She takes nothing to help her sleep and nothing for depression.
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Old 12-25-2017, 07:52 PM #9 (permalink)
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Just want to mention one antidepressant that many doctors don't prescribe. Remeron (Mirtazapine). It knocks you out and dries you out. I've been taking it since way before I got ALS. I couldn't tolerate any of the others. At low doses it is very relaxing and at high doses, more activating, so more energy. It's normally prescribed at bedtime.

If I'm having bad thoughts, I pop a Valium at bedtime and it relaxes me even more.
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Old 12-30-2017, 09:33 AM #10 (permalink)
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Default Re: sleeping

I have a good hospital bed, a physical therapist twice a week though I'd have to say that my ROM is pretty limited. The last nights have been better though, even if not perfect. My love has been visiting me and slept beside me for part of the night and that helped me sleep tight, partly.
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Old 12-30-2017, 03:05 PM #11 (permalink)
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Default Re: sleeping

I'm so glad you have had some sleep xxx
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