[ashleyk]

My wife has been unable to sleep at night because she goes off a few hours after taking her bedtime Sinemet ER. She feels encased in concrete and is frightened and confused. She has gone to the ER twice this month because of this. I am not getting any sleep because she calls me all through the night.
Her neuro prescribed seroquel (an anti-psychotic) but she does not like taking it.
Any ideas on PD meds to get you through the night when you have had PD for 12 years?

[HarryM]

Originally Posted by ashleyk

My wife has been unable to sleep at night because she goes off a few hours after taking her bedtime Sinemet ER. She feels encased in concrete and is frightened and confused. She has gone to the ER twice this month because of this. I am not getting any sleep because she calls me all through the night.
Her neuro prescribed seroquel (an anti-psychotic) but she does not like taking it.
Any ideas on PD meds to get you through the night when you have had PD for 12 years?

And the Sinemet ER does the opposite for me. Good sleep but wake every 2 hrs to take other meds.

[Jim091866]

I am 47, have had PD for 16 yrs. The ER is too slow to be effective. Is she getting enough sinemet to be effective? I also use clonazepam for rigidity and benadryl for getting to sleep. All of this will not work if she does not take the medication.

Originally Posted by ashleyk

My wife has been unable to sleep at night because she goes off a few hours after taking her bedtime Sinemet ER. She feels encased in concrete and is frightened and confused. She has gone to the ER twice this month because of this. I am not getting any sleep because she calls me all through the night.
Her neuro prescribed seroquel (an anti-psychotic) but she does not like taking it.
Any ideas on PD meds to get you through the night when you have had PD for 12 years?

[dilmar]

Originally Posted by ashleyk

My wife has been unable to sleep at night because she goes off a few hours after taking her bedtime Sinemet ER. She feels encased in concrete and is frightened and confused. She has gone to the ER twice this month because of this. I am not getting any sleep because she calls me all through the night.
Her neuro prescribed seroquel (an anti-psychotic) but she does not like taking it.
Any ideas on PD meds to get you through the night when you have had PD for 12 years?

Ashley
I wonder if your wife is experiencing episodes of sleep paralysis connected to REM sleep disorder. I don't know anything about it but what i have read on line. Try a google search.

[made it up]

Ashley K, or John?
I think I tried to answer another query recently regarding your wifes suitability for DBS.
Anyway, she feels as though she's set in concrete is a very accurate description of a bad off.
She's had PD a fair while now and its getting to an advanced state.
She needs more Sinemet at night.
Give her more she's understandably very off by her description.
It can be scary and very uncomfortable to be alone in this way.
Increase the dosage of levodopa by giving it to her during the night.
Sorry can't help with the other drugs and their side effects.

[madamlash]

I don't know which state you're in... medical marijuana? Even if you're not in a state where it is legalized, there are CBD products available derived from hemp which is legal everywhere.
I'm not recommending THC, which is the mind altering part of cannabis. I am suggesting CBD which has been recently in the news (Dr. Sanjay Gupta on tv) regarding the medicinal possibilities of CBD (cannabidiol) and it's terrific positive effects on children with various seizure conditions. There are several clinical trials going on as far as it's possibilities on various neurological problems.
The stronger forms of CBD are derived from cannabis and there are certain strains of cannabis that yield higher percentages of CBD, such as Charlotte's Web. Those medications must be obtained in states such as Colorado, California, etc from a dispensary with a medical marijuana card.
The weaker versions are obtainable from industrial hemp and preparations containing the hemp variety is available by mail from sites such as sootheen.com
I get mine from that company and it has done wonders for my sleep. I have been diagnosed for 14 years, have had DBS and use Carbidopa/levodopa. I used to wake up every couple of hours and often would experience a panic rendering freezing in the night. Now I'm able to get by every 4 or so hours and can get right back to sleep without further medication.
I know how she feels and really sympathize. Hope this helps.

[ashleyk]

Reading some of your replies to this post, I notice that two of you have had PD for 14 and 16 years. I was wondering if you can describe how you are currently doing. Specifically, cognition, mobility, weight and strength, med frequency and outlook?
My wife has had PD for 12 years now and she is close to going into a nursing home. She needs a lot of help now, mostly because she is not competent to reason or plan things through. She is in the PD group that has hallucinations which are becoming worse and, from what I've read, will develop into dementia. Her neurologist has recently ruled out DBS for that reason. This was a big letdown. Also, for some reason, her neuro wants to keep her stalevo/sinemet dopamine dose below 800 mg a day. At this point, she probably needs more sinemet but that tends to make her dyskenetic and mentally unstable into the evening. I don't know if much more can be done.
John

[madamlash]

Originally Posted by ashleyk

Reading some of your replies to this post, I notice that two of you have had PD for 14 and 16 years. I was wondering if you can describe how you are currently doing. Specifically, cognition, mobility, weight and strength, med frequency and outlook?
My wife has had PD for 12 years now and she is close to going into a nursing home. She needs a lot of help now, mostly because she is not competent to reason or plan things through. She is in the PD group that has hallucinations which are becoming worse and, from what I've read, will develop into dementia. Her neurologist has recently ruled out DBS for that reason. This was a big letdown. Also, for some reason, her neuro wants to keep her stalevo/sinemet dopamine dose below 800 mg a day. At this point, she probably needs more sinemet but that tends to make her dyskenetic and mentally unstable into the evening. I don't know if much more can be done.
John

I find myself feeling sorry for myself until I am reminded that I am quite lucky to function as well as I am. I played piano for a living my entire life and I believe that the repetitious movement, rhythms, etc probably helped me. I did finally have to retire a few months ago as I generally feel rather faint and slightly ill much of the time. Many days are spent in bed. On the other hand, I had DBS and it pretty much eliminated my nasty dyskinesia. I was also able to cut down on my carbidopa/levodopa to one 25/100 every hour and often I can go two or three hours between doses. I used to have to wake up every couple hours to take medication which I now am getting 7-8 hours sleep a night.
I notice memory issues. Often searching for a word or short term memory loss or forgetting someone's name. Complex math problems are often difficult. I do not live alone and would feel very afraid to stay alone. I am able to bath, dress, see to my general care but, again, I would not function well all by myself. I still drive my car but limit my travels to close, well known destinations. My weight has dropped some but not abnormally so. I have lost a great amount of my strength. It is hard to open jars because of loss of hand strength. Objects seem much heavier to me now. I cannot stand for long periods of time without feeling faint.

[stevem53]

Originally Posted by ashleyk

My wife has been unable to sleep at night because she goes off a few hours after taking her bedtime Sinemet ER. She feels encased in concrete and is frightened and confused. She has gone to the ER twice this month because of this. I am not getting any sleep because she calls me all through the night.
Her neuro prescribed seroquel (an anti-psychotic) but she does not like taking it.
Any ideas on PD meds to get you through the night when you have had PD for 12 years?

I had serious problems with my whole body feeling uncomfortable when I went off for the night..It got so bad that I was getting 1-2 hours of sleep per night, and sometimes no sleep at all..This feeling made me want to jump out of my skin..I drove me crazy..I could not wear jeans anymore, because I felt like I was walking around in shrink wrap..I wore sweats for about 4 years..Then my Neuro suggested Gabapentin..I coudn't believe the change!!..He started me off on 300mg..I am now on 800mg, and I am back to sleeping 6-8 hours per night..I am also back to wearing jeans again..I would suggest talking with your neuro about it..I know what feeling encased feels like..I have also had pd for 12 years

[bluedahlia]

Flexeril works too.