Trouble Sleeping

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Mike C

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Hi, newly diagnosed and having trouble sleeping. I'm able to doze off but can't stay sleeping. A lot of it is mental, but I have constant twitching in my arms chest and legs. However, I think what's waking me is twitching in my chest / throat area. I don't have any problems breathing or swallowing, just wondering if this is possibly the onset of those issues?
Thanks,
Mike
 

Doglady

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Welcome Mike and sorry for your diagnosis. My fasiculations were most intense in the early days and kept me awake a lot too. As particular muscles weakened the twitching in that area decreased and eventually went away. I have to admit my sleep was also disturbed by too much thinking. Good luck on sleeping better soon. Mary
 

KarenNWendyn

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Consider Magnesium Oxide 400 mg at bedtime to relax the muscles. For sleep, I’ve had pretty good success with melatonin 3-5 mg at bedtime. The bedtime anxiety gets better. If it doesn’t, SSRI antidepressants can be very helpful.
The fasciculations may or may not go away, but if you’re relaxed, you’re more likely to ignore them.
 

lgelb

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Hi, Mike, you might benefit from a hospital bed for more control over your position. As muscles weaken, it is harder to tolerate a completely flat position, even if your breathing is fine.

Best,
Laurie
 

EricInLA

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Mike - Sleeping and constant twitching have been two of my big problems in the early going. Lack of sleep is miserable. I have tried a variety of things - warm baths, meditation (it's not for me), Ambien, Melatonin, Ativan, cannabis etc etc., and have finally settled into a routine that seems to work for me. I am on an SSRI anti-depressant (Lexapro) which removes the constant sense of dread, and I take 50 mg of something called Trazadone shortly before bedtime. It works really well for sleep, and apparently is not as addictive as Ativan and Ambien. My doctor feels more comfortable with me taking Trazadone on a regular basis than Ambien or Ativan. I think it also helps to be further away in time from the day I received the awful news, and slowly transitioning into my post-diagnosis life, just trying to live every day to the fullest. Getting a full night's sleep really has a beneficial domino effect for me. Look into Trazadone, my friend.
 

Kristina1

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Trazodone is a very safe sleep aide with very low sideffects. My son has special needs and has been on Trazodone since he was 2. That's how safe it is!

But as my ALS has progressed lorazepam (Ativan) became a better fit for me and I was just switched to clonazapam because it lasts longer.
 

KimT

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I had a lot of success with CBD oil combined with Remeron, an antidepressant.

CBD oil alone might help but I'd take magnesium no matter what. It helps with so many things and most people take in way too much calcium compared to magnesium. These two minerals oppose one another. Magnesium orally and topically both could help with twitches and sleep.
 

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Endep became a turning point in sleeping for my Chris, combined with a good hospital bed and being positioned in it with a hoyer as he couldn't move himself, so had to be set up really well to start with.
 

Vincent

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Do not forget THC. I have been using a 1:1 THC/CBD combination oil at about 12.5 %. Fasciculations and crams are gone and with the oil sleep isn't an issue. I know cannabis is sort of a grey area legally in some places (it's legal in Canada), but for a drug with such obvious benefit for PALS I say to hell with the law.
Vincent
 

EricInLA

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Vincent, I love the honesty and humor in your posts - I look forward to them. One question - is the 1:1 oil something that is vaped? Or taken orally or as a topical? And do you recommend a brand? I only have experience with the flower and edible stuff (I know, old school)
 

KimT

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I use Trulieve brand THC. You should always start low and use Indica for sleep. Start with 5 mg. and work up to whatever works. When you add CBD, it dampens the "high" feeling but you should not feel high with 5 mg. I only use oil, never vape or smoke. Bad for lungs when other alternatives are available. I use Charlotte's Web for CBD and like to keep them separate.
 

Vincent

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Vincent, I love the honesty and humor in your posts - I look forward to them. One question - is the 1:1 oil something that is vaped? Or taken orally or as a topical? And do you recommend a brand? I only have experience with the flower and edible stuff (I know, old school)
The oil I use goes straight into my feeding tube. Going in the tube means you don"t have to taste it. Most oils taste pretty nasty.
Vincent
 

JimInVA

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If you are a veteran of the military, Lazarus Naturals offers deep discounts on their CBD products. Darcey takes 1mg of Lorazepam and CBD (via her feeding tube) just before bed and she sleeps well through the night. About once a week she substitutes Melatonin for the Lorazepam for a few nights. I hope you find something that works for you, Mike.

My best...

Jim
 

frankb

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thanks, Jim, for the the tip regarding Lazarus naturals. which product works best for Darcey ? many thanks/frank
 

JimInVA

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Frank,

Let me separate the components of Darcey's sleep cocktail...

(1) Pills - On the prescription side, Darcey's tried Lorazepam (Ativan) and Valium. Both would help her get to sleep but only the Lorazepam kept her asleep. She'd wake in the middle of the night as the Valium wore off and not be able to return to sleep. She switches occasionally to the Melatonin to give her body a break from the Lorazepam with the hope that it will help to keep the Lorazepam effective for her.

(2) CBD Oil - Due to current Virginia law, THC content is not lawful... though our General Assembly is working to change that. Darcey was, however, able to try some "gummies" but didn't like the "high" component of that. If it were legally and/or easily available, she'd likely experiment with THC dosing. As an alternative, I ordered her some Charlotte's Web Full Strength Hemp Extract Oil (CBD). I'd add one dropper full (1mg) to her nightly mix. As each serving has 11mg of CBD, the strength was 11mg/ml.

For Darcey, the addition of the CBD seems to extend her ability to sleep deeper and longer. She also tends to feel better upon waking. Last night was the first night that she's had the Lazarus Naturals. I'd actually purchased that for myself and used it twice a day before I stopped taking it in October. I had major back surgery in November and didn't want the CBD to interfere with any other medications. So when Darcey's Charlotte's Web bottle was empty, I moved her over to the Lazarus.

One can order different concentrations of CBD from any of the available suppliers. When I ordered the Lazarus Naturals, and particularly when I saw how much of a discount they were willing to offer for my previous military service, I selected the largest bottle of their highest potency. My thought was that I could control dosing level until I found that which worked well for me. As this is 50mg/ml versus the 11mg/ml Darcey had been taking previously, I lowered the dropper amount to 1/4 of a ml (12.5mg). She didn't notice any difference last night.

I don't know if any of this is of help, but I've tried to be as concise as possible in regards to Darcey's experience with sleeping. Know that she also has a hospital bed that can be adjusted to a non-flat position that is more comfortable and uses an 8" low pressure alternating air mattress to help with sleep. Please let me know if I can answer any other questions you may have.

Again, my best...

Jim
 
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