falling asleep while walking - need suggestions

[Astrojupiter]

My mother falls asleep while she is walking. She has Parkinson’s but not on any medications for that. She has dementia which is not Alzheimer’s in that her sleep timing is still normal. Also she has gradually been worsening for 20 years which is kind of odd for Alzheimer’s. She takes Ropinirole for extremely severe RLS. Without it she gets up every 20 minutes at night and has to be monitored for falls all during the night. She sleeps great with this medication and stopped falling at night.

We tried giving it to her during the day as she has RLS during the day also, trying to nap and too restless. She could not use it because it stopped working at night without the break during the day.

I think she had this sudden sleepiness before starting Ropinirole, and it seems to help the symptom after she gets it at night.

She was referred to Neurology for the sudden sleep onset, while eating or walking, but we were told it would be a very long wait. It has been 2 years and we still waiting. Primary care has no suggestions.

She falls twice a week from falling asleep while she is walking and we catch her even more.

It is definitely falling asleep, not passing out. There is no warning except it happens at times before bedtime more, or when she has been taking naps. She never falls at the store, outdoors, or walking down steps. I guess she is more alert then. It only happens at home. She wakes up only with a lot of stimulation, like a fall or yelling at her in a frightened.

Overall she has been improving with lithium, better gait, fewer other falls, less masked fasces. However, this problem is not improving.

She also takes Benazepril for decades.

I would appreciate any insight into what is occurring.

[Hikoi]

It is a challenge to follow and respond to your concerns as we don't have all the facts.

First I’m not sure what symptoms of dementia your mother has or how old she is. It could be that she just has cognitive challenges which are not necessarily dementia. The dementia associated with Parkinsons is Lewy Body not Alzheimers .

Ropinerole gave me sleep attacks but I havent had the problem with other meds. I would fall asleep while talking.

Why isn't your mother on levadopa? It may cure all these problems.

[Astrojupiter in reply to Hikoi]

memory problems, short term memory a few minutes, not oriented to time and place, trouble naming things, recognizes family but not regular caregivers . Very poor judgement, such as asks if she should throw trash on the ground, or she can eat inedible objects. She may have Lewy body dementia. She does not hallucinate. She did develop a lot more friendly and less reserved personality as she got more dementia.

It is definitely a sleep attack like narcolepsy. I thought she had it prior to starting the medication, and the medication stops it from happening, until it wears off.

Is there something that would treat the RLS and not cause sleep attacks. We can not live with untreated RLS at night.

She is taking all that except BCAA. Although the fish oil is low dose. Maybe more? I can experiment with more caffeine. She is pretty anxious however.

[Astrojupiter in reply to Astrojupiter]

she is 88 years old

[chartist]

Narcolepsy like symptoms are a known side effect of Ropinirole via reduction of hypothalamic neuropeptide orexin as discussed here :

pubmed.ncbi.nlm.nih.gov/207....

Here is a relevant quote :

' Non-ergot-type dopamine receptor agonists such as ropinirole are used for the treatment of Parkinson disease, but they occasionally show serious side effects including sleep attacks and daytime sleepiness. These symptoms are reminiscent of narcolepsy, a major sleep disorder. '

A few ways to increase orexin levels are morning sun exposure, omega 3s such as fish oil, caffeine containing drinks such as green tea or coffee and branched chain amino acids (BCCAs). Here is a link to typical BCCA products :

amazon.com/s?k=BCCA&crid=3C...

The following suggests that caffeine can stimulate orexin levels :

ncbi.nlm.nih.gov/pmc/articl....

The following suggests that BCAAs stimulate orexin levels :

ncbi.nlm.nih.gov/pmc/articl...

A relevant study quote :

' Our data suggest that dietary BCAA intervention, acting in part through orexin, can ameliorate injury-induced sleep disturbances and may facilitate cognitive rehabilitation after brain injury. '

Art

[Astrojupiter in reply to chartist]

thank you. That is helpful

[JohnPepper]

I fall asleep at the dinner-table quite often, even with visitors present. It is embarrassing, but what can I do?

[Astrojupiter in reply to JohnPepper]

actually if you just get sleepy after a meal you may be able to help with breathing exercises. It may not be great for digestion but might help you stay awake.

The one you can do with no one knowing it is a slow inspiration followed by a quick expiration. Try count of 8 inhale and count of 4 exhale. The opposite is relaxing, long expiration, quick inspiration, and how I go to sleep.

The second one breath through the right nostril, exhale through the left. Try it for 3 to 5 minutes. You have to use your finger to close the nostril.

These are ancient techniques from India, part of what is called Pranayama. Many of the breathing exercises have been studied in studies and found to do what they claim.

They say avoid it if you have heart disease or high BP.

I also notice when I close the right nostril my right lung inflates more than the left. If you are right handed and early sign of Parkinson’s is the right side is affected including not breathing as much through the right lung.

I think it would also help you stay awake to consciously breathe into your right lung after dinner. You could also try alternating left right chest expansion with left and it might make you more alert without harming digestion, as it is more balancing.

For 100 percent of right handed, and 95 percent of left handed the right nostril is the activating nostril.

yogajournal.com/practice/en...

I got the impression from a podcast by Peter attia, a neurologist from I think Stanford is testing breathing into right lung as part of a treatment for early Parkinson’s because this happens in very early disease. From traditional Indian medicine it seems likely that balancing the two sides through breath might help.

[Sane1 in reply to JohnPepper]

I used to do that even in restaurants. You are right it can be embarrassing. When I started falling asleep at red lights while driving my neuro guy cut my pramapexole dose in half… no problem since.

[1LittleWillow]

I have had RLS at night in the past. It's horrible! Magnesium and potassium (and possibly phosphorous) keep it at bay for me. I take magnesium glycinate at bedtime (I also take other forms during the day). I often eat a small piece of very dark organic chocolate, a handful of sprouted pumpkin seeds, and sometimes half of a banana before bed. I used to only take supplements to control the RLS, but I've found that getting the nutrients through food works even better for me.

Does your mom take high-dose thiamine (vitamin B1) during the day? That could help too.

[Astrojupiter in reply to 1LittleWillow]

I have ordered high dose B1 and I am going to start it when I get back from a trip. She takes mg theonine at bedtime. It may help her memory a little. We both started that 2 months ago.

I researched the medications causing sleep attacks. Some believe it is just Parkinson’s disease not the medicine that causes it. That is consistent with my experience as she was already having the sleep attacks when we started the medicine.

Thank you, I have some ideas to experiment with