Parkinson’s unresponsive episodes.

Posted by bethv @bethv, Sep 16, 2018

My father, 93 years old, is suffering these unresponsive episodes, not to be confused with “freezing” of gait. The episode can last two hours and we think might be related to dehydration. Why can’t I find any mention of this in any web sites that describe Parkinson’s? Only in caregiver sites have I found any information. Is no one studying this phenomenon? There may be some connection here that needs investigation.

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

Hello @pspt and welcome to Mayo Clinic Connect. We have had many caregivers post regarding these phenomena of "unresponsive episodes" of folks with PD. If I am understanding correctly, this was your dad's first and only episode of this kind. Is that correct?

I would like to invite @farmerleebs to this discussion. Her mother has also had one of these episodes and perhaps she can share that experience with you.

Just wondering if your dad had any falls or other problems that proceeded this unresponsive episode? Does he use assistive devices when he moves around?

I look forward to hearing from you again. Will you post as you learn more?

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@pspt

My dad is 86. He has had PD ~10yrs. He has been managed by a terrific movement disorder specialist at a University hospital. I am an PT and dad has maintained a daily walking and exercise program that has helped him maintain his mobility. The past year he has started to decline with more falls, more confusion and hallucinations. He has been on Seroquel for the past 3 months and that has helped manage his hallucinations. Dad has had 2 previous episodes of unresponsiveness in the past 6 weeks that lasted ~1-2 hrs. Today, I could not wake him up in the morning. He was unresponsive for 3 hours. His HR, BP, SaO2, blood sugar and temp were all normal. I called his MD and was told to take him to ER. As soon as I got off the phone with MD, he woke up. He doesn't remember anything. He was totally fine after he woke up. Does anyone have any other updates on why this is happening? Is it a progression of his PD? Could it be seizure activity or related to the seroquel? The doctor has suggested he start Nuplazid and eventually reduce the seroquel from his current dose of 37.5 mg. Nuplazid will take ~3months to start working. Any advice is appreciated.

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My mom has Parkinson’s as well. She is 83 years old. She just had her third unresponsive episode. She is also out for about an hour where she is totally unresponsive, she then wakes up with no recollection. Her vitals have been normal. She has gone to the hospital and they have not come to a conclusion about what is causing these episodes. Sorry I am not much help at all except for understanding what you go through.

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@farmerleebs

My mom has Parkinson’s as well. She is 83 years old. She just had her third unresponsive episode. She is also out for about an hour where she is totally unresponsive, she then wakes up with no recollection. Her vitals have been normal. She has gone to the hospital and they have not come to a conclusion about what is causing these episodes. Sorry I am not much help at all except for understanding what you go through.

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I'm sorry to hear that your mom has unresponsive episodes too. It is scary to see a loved one like that. Is your mom on seroquel ("quitiopine")?

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@pspt

My dad is 86. He has had PD ~10yrs. He has been managed by a terrific movement disorder specialist at a University hospital. I am an PT and dad has maintained a daily walking and exercise program that has helped him maintain his mobility. The past year he has started to decline with more falls, more confusion and hallucinations. He has been on Seroquel for the past 3 months and that has helped manage his hallucinations. Dad has had 2 previous episodes of unresponsiveness in the past 6 weeks that lasted ~1-2 hrs. Today, I could not wake him up in the morning. He was unresponsive for 3 hours. His HR, BP, SaO2, blood sugar and temp were all normal. I called his MD and was told to take him to ER. As soon as I got off the phone with MD, he woke up. He doesn't remember anything. He was totally fine after he woke up. Does anyone have any other updates on why this is happening? Is it a progression of his PD? Could it be seizure activity or related to the seroquel? The doctor has suggested he start Nuplazid and eventually reduce the seroquel from his current dose of 37.5 mg. Nuplazid will take ~3months to start working. Any advice is appreciated.

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My wife is 83 and has had Parkinson's for 14 years. She has had similar "non-responsive" episodes that look to me more like petit mal seizures. At first it was just a simple staring and then sleeping for an hour or 2 with no memory. The last episode she was putting a puzzle together and stopped moving. That lasted a few minutes. However, this time instead of just sleeping afterwards, she went totally unconscious, and would have fallen out of her chair if I had not caught her. She was unconscious for several minutes and woke up asking what she did. That evening, she could not eat her supper. She kept falling asleep. Eventually she went to bed and slept about 14 hours. Her neurologist put her on Kepra and weaned her off of Topamax. She could not tolerate the Kepra and we are now reversing the process to put her back on the Topamax where she was more functional. Originally, she was on the Topamax for Ocular Migraines. A combination of an ocular migraine and a bladder infection put her in the hospital and unresponsive for 3 days. She is showing signs of dementia and has hallucinations but they are not bothersome.
I, too, am open to suggestions and ideas.

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My 67 year old brother was diagnosed with Parkinson’s disease 10 years ago. He recently started experiencing episodes of unresponsiveness that are increasing in frequency and duration. He has frequent hallucinations and experiences paranoia. He takes levadopa/carbidopa, Nuplazid, rivastigmine, Northera for labile blood pressure and meds for AFib, Type2 diabetes, and depression. He lives in a memory care unit due to his cognitive decline and has been sent to the hospital twice due to these episodes. The events that have been witnessed by staff start with fluttering eyelids and then no response to touch including sternal rubs or sound. His vital signs remain stable. He was admitted to the hospital the first time and all the tests were within normal limits. Upon return to his memory care unit, he had increased paranoia and hallucinations so his neurologist added Seroquel to his regime. The second time he was sent to the ER after an unwitnessed fall with a short period of unresponsiveness followed by extreme confusion. He was sent home within several hours with all tests normal. At a follow-up appointment, his neurologist did an EEG which revealed slowed brain activity but no signs of seizures. Several days ago he experienced another witnessed episode with fluttering eyelids and slumping in the recliner. Again his vital signs including blood sugar were within his normal limits. We opted to forgo a trip to the ER. This time his unresponsiveness lasted 45 minutes. Any ideas on how to handle these episodes? Should he go to the ER each time they happen?

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@healthsurrogate

My 67 year old brother was diagnosed with Parkinson’s disease 10 years ago. He recently started experiencing episodes of unresponsiveness that are increasing in frequency and duration. He has frequent hallucinations and experiences paranoia. He takes levadopa/carbidopa, Nuplazid, rivastigmine, Northera for labile blood pressure and meds for AFib, Type2 diabetes, and depression. He lives in a memory care unit due to his cognitive decline and has been sent to the hospital twice due to these episodes. The events that have been witnessed by staff start with fluttering eyelids and then no response to touch including sternal rubs or sound. His vital signs remain stable. He was admitted to the hospital the first time and all the tests were within normal limits. Upon return to his memory care unit, he had increased paranoia and hallucinations so his neurologist added Seroquel to his regime. The second time he was sent to the ER after an unwitnessed fall with a short period of unresponsiveness followed by extreme confusion. He was sent home within several hours with all tests normal. At a follow-up appointment, his neurologist did an EEG which revealed slowed brain activity but no signs of seizures. Several days ago he experienced another witnessed episode with fluttering eyelids and slumping in the recliner. Again his vital signs including blood sugar were within his normal limits. We opted to forgo a trip to the ER. This time his unresponsiveness lasted 45 minutes. Any ideas on how to handle these episodes? Should he go to the ER each time they happen?

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Hello @healthsurrogate and welcome to Mayo Clinic Connect. I can see this is a challenging decision given his stable vital signs and recovery after unresponsiveness. It seems as though having a baseline and information to compare the progression to may be helpful and also provide some insight as well.

@farmerleebs may be able to share additional information as her mother has experienced an unresponsive episode. Other members who have also mentioned unresponsive episodes include @bethv, @chuckcallahan, @mshoggie, @judithanne.

I am curious what instructions you were given or advice his doctor suggested?

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@amandajro

Hello @healthsurrogate and welcome to Mayo Clinic Connect. I can see this is a challenging decision given his stable vital signs and recovery after unresponsiveness. It seems as though having a baseline and information to compare the progression to may be helpful and also provide some insight as well.

@farmerleebs may be able to share additional information as her mother has experienced an unresponsive episode. Other members who have also mentioned unresponsive episodes include @bethv, @chuckcallahan, @mshoggie, @judithanne.

I am curious what instructions you were given or advice his doctor suggested?

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No suggestions were given other than doing an EEG. Had to chase down the neurologist to get the results of the EEG. As a nurse, I am very frustrated with the delay in follow up, but I do not see any value in sending him to the hospital since it only seems to increase his confusion, paranoia, and hallucinations.

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@healthsurrogate

My 67 year old brother was diagnosed with Parkinson’s disease 10 years ago. He recently started experiencing episodes of unresponsiveness that are increasing in frequency and duration. He has frequent hallucinations and experiences paranoia. He takes levadopa/carbidopa, Nuplazid, rivastigmine, Northera for labile blood pressure and meds for AFib, Type2 diabetes, and depression. He lives in a memory care unit due to his cognitive decline and has been sent to the hospital twice due to these episodes. The events that have been witnessed by staff start with fluttering eyelids and then no response to touch including sternal rubs or sound. His vital signs remain stable. He was admitted to the hospital the first time and all the tests were within normal limits. Upon return to his memory care unit, he had increased paranoia and hallucinations so his neurologist added Seroquel to his regime. The second time he was sent to the ER after an unwitnessed fall with a short period of unresponsiveness followed by extreme confusion. He was sent home within several hours with all tests normal. At a follow-up appointment, his neurologist did an EEG which revealed slowed brain activity but no signs of seizures. Several days ago he experienced another witnessed episode with fluttering eyelids and slumping in the recliner. Again his vital signs including blood sugar were within his normal limits. We opted to forgo a trip to the ER. This time his unresponsiveness lasted 45 minutes. Any ideas on how to handle these episodes? Should he go to the ER each time they happen?

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My husband also has very similar episodes of unresponsiveness. It is usually very near his next scheduled dose of carb/levo. I have found that administration of Parcopa, (an orally dissolving form of carb/levo) shortens the episodes miraculously when given with orange juice. His blood pressure during his episodes is low, 80’s/30’s. It also helps to lay him flat, & elevate his feet. He is up and going within 15 minutes, alert, and ready to go. His medications are Carb/levo 25/100 q 3hrs while awake, rotigitine 2mg patch daily, aricept 15 mg in divided doses of 10& 5 given with 10 mg of memantine twice a day in the early AM & after lunch.
We have also found that 20-30 minutes with a personal trainer on an ICare elliptical 2-3 times a week is very beneficial. We recently have added a 30 minute Bowen’s massage therapy twice a week which seem to help with mobility issues. His unresponsive episodes typically increase during episodes of Any physical stress due to constipation or infections ( ie. UTI, nephritis) or emotional stress due to upsetting life events. His diagnosis was LBD with Parkinsonism in 2012. He has no other chronic diseases.

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Thank you for sharing your experience with your husband. He’s had a personal trainer for the past year which keeps him active. He doesn’t have many issues with mobility. I took him back to his previous neurologist and she believes it is related to his blood pressure so she has started slowly decreasing his levadopa/carbidopa. I also took him to his cardiologist and he switched the timing of his blood pressure medications and increased his morning and afternoon Northera doses. He hasn’t had any recent episodes. Now if I can just get the memory unit to give him more fluids throughout the day. Unfortunately he doesn’t ask and they don’t offer.

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@beloved1

My husband also has very similar episodes of unresponsiveness. It is usually very near his next scheduled dose of carb/levo. I have found that administration of Parcopa, (an orally dissolving form of carb/levo) shortens the episodes miraculously when given with orange juice. His blood pressure during his episodes is low, 80’s/30’s. It also helps to lay him flat, & elevate his feet. He is up and going within 15 minutes, alert, and ready to go. His medications are Carb/levo 25/100 q 3hrs while awake, rotigitine 2mg patch daily, aricept 15 mg in divided doses of 10& 5 given with 10 mg of memantine twice a day in the early AM & after lunch.
We have also found that 20-30 minutes with a personal trainer on an ICare elliptical 2-3 times a week is very beneficial. We recently have added a 30 minute Bowen’s massage therapy twice a week which seem to help with mobility issues. His unresponsive episodes typically increase during episodes of Any physical stress due to constipation or infections ( ie. UTI, nephritis) or emotional stress due to upsetting life events. His diagnosis was LBD with Parkinsonism in 2012. He has no other chronic diseases.

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Hello @beloved1 and welcome to Mayo Clinic Connect. Thank you for joining the discussion to share what you have learned and what you are doing for your husband for his episodes of unresponsiveness.

Can you share more about the elliptical regimen and how that has been helping him?

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