Choking/coughing during sleep

[EricInLA]

My wife just told me that occasionally -- once every week or two -- I will wake up choking and/or coughing, and that sometimes I will even go to the sink to spit up whatever I have just coughed up. I had no idea - my brain must be erasing these episodes once I fall back asleep. But it alarmed me because so far in my disease course I have not had any problems eating or breathing. I am limb-onset, with weakness and atrophy mostly in my right arm and hand, and a little bit in left leg so far. I'm curious whether anyone's breathing/coughing problems started in the middle of their sleep. Since she says I am going to sink to get rid of whatever I've coughed up, I'm wondering whether this is something separate like reflux, though I know reflux issues can be magnified when mixed with weakened throat/chest muscles. I guess I'm hoping I'm not quite there yet.

 

[ShiftKicker]

If you have the option of getting a sleep study, that would definitely help narrow things down. In the meantime, while waiting for an appointment, treating it like you do have reflux (a change in diet, making sure no food or drink less than 3 hrs before sleep, sleeping propped up a bit or on left side, etc) might also help. It could be your digestion is slowing down due to inactivity, changes in weight, dietary changes (?), meds- or you may not be moving around as much at night?

 

[Nikki J]

Another thought might be allergies? I have been walking up coughing and an antihistamine ( non sedating so I didn’t just sleep through it) stopped it. I have known seasonal allergies so it was my first thought for myself

 

[EricInLA]

Those are really good comments. I am guilty of eating dinner too close to bedtime so I'm gonna try to adjust. Also I do have allergies lately. The comment about meds is interesting - wifey says I've also been snoring way more than I ever have, since going on Trazadone to help with sleep. So maybe that's a factor in play.

 

[lgelb]

The fact that you do all this and don't remember the episodes, coupled with the snoring, suggests the trazodone might be over the top. How much are you taking? You could try tapering the dosage, playing with the time of day you take it, or trying its cousin, mirtazapine. There are other options if these don't work out.

 

[lisa g]

Funny you mention this Eric, back in 2016 (2 years prior to diagnosis) my husband would tell me that I was coughing, choking and snoring at night. I didn't believe him until he took a video one night and showed it to me. He showed it to my PCP who ordered a sleep study. The results showed I had developed sleep apnea. I'm 4'11 and at that time 100lbs so it was a surprise. I also suffer from allergies. I was given a CPAP machine. I just had my PFT which showed my respiration numbers are very good but my pulmonologist switched me to a trilogy to stay ahead of possible respiration problems down the road. I use it at night with some CBD (1:9 ratio) and sleep through the night.

 

[lgelb]

No PALS should be on CPAP. BiPAP does everything it does and more (like adjusting EPAP >3cm below IPAP, the limit of CPAP machines, so you are not unnecessarily overloading your breathing muscles during exhalation). You will hear people say that OSA requires nearly equal EPAP but if IPAP is set conservatively, this is seldom true for PALS, and when it is, the BiPAP easily accomodates it.

Any of the sedating antidepressants, trazodone among them, as well as drugs in the Ambien and Valium classes, respectively, can collapse your airway as everything relaxes and thus trigger obstructive apnea. However, as Lisa found, OSA can also appear without them, at any weight.

Obese people more often experience this kind of apnea in part because their necks block airflow and their torso can block chest/abdominal expansion.

Important note: obstructive disease sometimes "drops out" as ALS progresses and if/when that happens, your settings likely will need adjustment, as they typically do with progression anyway.

 

[EricInLA]

This is very interesting (and quite a collection of acronyms). I take one 50 Mg pill of Trazadone every night before bed. I didn't think that was a lot but perhaps it is? I started it about a year ago when sleeping was really a problem for me after the shock of my diagnosis. I have slept soundly ever since and really don't want to go back to my sleepless nights. (I am also on Lexapro and I've always wondered if those two together was overkill, but I also don't want to go back to my dark moods). The pill container does say that I should take "1/2 or 1 pill before bed", so maybe I'll reduce the Traz to 1/2 a pill to see if it cuts down on the snoring.

Lisa - Does 1:9 ratio mean only 10% is the THC? What form do you take this in?

 

[lgelb]

50 is pretty low, but everyone responds differently. Some people take 25. A lot of times low-dose traz is given with an SSRI to cut down on the sleep disturbances SSRIs often cause. However, if you are taking other rx, you should input your whole list into drugs.com or somewhere to make sure you are not risking serotonin syndrome, etc.

GERD and allergies are good thoughts as well. As people age (not calling you old, they often are less tolerant of eating just before bed, even before you throw ALS in.

 

[KevinM]

I could be wrong, Eric, but my hunch is that this is not a result of the Trazadone. I have taken it for the past two years, and have taken 100 mg for most of that time with no issues. It would be unusual for these events to suddenly manifest after using that low dose for quite a while

I have occasionally had periods of night coughing (I wouldn’t describe these as choking) over the past two years, but they always went away after a week or so. These episodes seemed to relate to the major periods of blooming flora here. I would lean more to Nikki’s comments, or to the possibility of sleep apnea. There is an in home oxygen saturation test your PCP can prescribe which will give you some insight, but an overnight sleep study would be the gold standard.

Not remembering getting up for a quick bathroom trip is not that uncommon, but you didn’t mention if this has previously occurred.

Stay positive, Eric. I’m hoping this is temporary. Best, Kevin

 

[nona]

Having gone through all of the above, my money is on reflux. That said, a sleep study wouldn't hurt but doesn't seem urgent if you're not waking up with other symptoms of sleep apnea or sleeplessness.

 

[EricInLA]

GERD is one of the terms I've heard a lot, but never knew what it was. Sounds like a financial planning device, like 'guaranteed equitable retirement distribution'. Anyway I'm learning - I always think of myself as a spring chicken but I suppose I'm not clucking as spryly as I used to! Thanks everyone for your feedback. And thanks Kevin to remind me to stay positive. Some days you just need to hear that so today I will do that because you told me to.

 

[KevinM]

I agree, Jessie, an overnight sleep study is premature right now. And reflux is definitely a possibility.

Eric, I’m sometimes better at encouraging folks to stay positive than I am at practicing it myself. When I saw Laurie’s comment about serotonin syndrome, I immediately freaked out and googled it to see if I fit the profile! K

 

[lisa g]

Eric the 1:9 ratio is cbd:thc. I use sublingual oil or drops that I get from my dispensary. On the drops its broken down to 0.5mg cbd to 4.5mg thc. I use plain cbd oil during the day so I don't get drowsy. I'm not sure if it's the same in all states but in Florida 1:9 ratio is the highest percentage allowed in the oil and drops. I was told by the Dr that ALS patients benefit greatly from smoking the buds. My thought is ALS affects respiratory so why would I inhale and possibly due damage to my lungs so I didn't go that route.

 

[KevinM]

Damn, Lisa, that’s some potent tincture! I use a 1:1 tincture and can adjust dosage upward if needed without sending me into orbit. It sounds like you only use at bedtime for sleep and to control any muscle spasms. Have you tried it in the day? K

P.S. Sorry if I hijacked the post a little bit, Eric.