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 Gabapentin 
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Gabapentin
What I wanted for Dale was a sleeping pill. (Melatonin did not work for Dale.) What the neurologist has given Dale is Gabapentin. For two nights, I've given him 300 mg... or 1/2 tablet. I think that Dale is now much worse.

Both nights, Dale has talked to the ceiling for four hours before going to sleep. He is sure he has a business plan which will make me very wealthy. He talks about it endlessly and gets very emotional because I won't respond by taking him somewhere and acting on his plan. Both nights, I have eventually given him both Seroquel 50 mg and later, Xanax to calm him down.

Dale was on Seroquel 100 mg every night from August 09 to the present and his previous night time behavior had virtually stopped. In the past month, he has had more severe delusions and hallucinations and the doctor prescribed Xanax.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Feb 12, 2011 5:46 am
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Post Re: Gabapentin
My mother is on gabapentin. I thought it was prescribed for pain and for seizure disorders. It does help my mother with pain control and I don't think she is any more confused or delusional than without it. Does Dale's neurologist think he is staying awake due to pain or something?

Julianne


Sat Feb 12, 2011 9:57 am
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Location: Ocala, FL
Post Re: Gabapentin
Thanks for your input. Yes, Julianne, that's the theory. He complains constantly about lower back pain.

I've read that it is often used for the pain of Shingles.

Are the delusions and hallucinations your mother experiences constant? Dale is always delusional now. It gets much worse after dinner.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Feb 12, 2011 10:06 am
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Location: Acton, MA
Post Re: Gabapentin
For a while Frank was sleeping 14-18 hrs, so his gabapentin was cut from 300mg to 100. Then he woke between 1:00-3:00AM, so I went back to the 300mg and "most of the time", he sleeps from 6:30Pm to 7:30-8:00AM. I find that lets me have plenty of "me" time. I'm never sure if it's the meds or the disease. The gabapentin doesn't seem to add to any behavior problem, but the lack of sleep is always followed by a horrible day.

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sat Feb 12, 2011 10:23 am
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Post Re: Gabapentin
Gerry.... Is Gabapentin 300 mg the only pill he takes in the evening?

It seems to me that if Dale is too stimulated during the day, he cannot quiet down in the evening - and sundowning becomes much worse. The physical therapist had him up and walking (with a gait belt) yesterday - for the second time. (He can no longer figure out how a walker works.)

I would think that would have made him tired and ready to sleep.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Feb 12, 2011 10:47 am
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Post Re: Gabapentin
My mother complains constantly of pain, too, despite being on a pain patch as well as Vicodin in addition to the gabapentin. Seems to me that LBD patients experience pain, or what they describe as pain, somehow differently than the rest of us.

She is extremely cagey about trying to appear normal and hiding her symptoms. As soon as she realized that she was hallucinating sometimes, and it was part of her disease, she clammed up about it. (She used to talk about cats and children playing together in the halls.) Her delusions are easier for me to spot because she is not as good at hiding them. She is delusional frequently but not all the time.

My mother also is worse in the evenings with her confusion, delusions and forgetfulness. I have learned never to call her past about 5 p.m. if I have anything substantive to discuss because she is unlikely to process it.

I wish there was a way to get to the bottom of the pain issues.

Julianne


Sat Feb 12, 2011 11:19 am
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Location: WA
Post Re: Gabapentin
I'm wondering if hypersensitivity is at the root of some of it. I can gently lift my husband's arm and he will growl that I am tearing his arm off, and he is the same way with the aides and therapists. But he seldom complains of pain when left undisturbed. His hearing is hyper-acute and I wonder if his sense of touch might be, as well [the technical term would be hyperesthesia].

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Feb 12, 2011 1:15 pm
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Post Re: Gabapentin
That's an interesting point, Pat. So many other things seem to go haywire, so to speak, it wouldn't seem too surprising if hypersensitivity is part of it.

My mother is still ambulatory but complains bitterly of pain in her lower back, hips and knees. This is nothing new because she has severe arthritis in those joints, but it amazes me that she can still be in pain with all of the medications she is taking.

Julianne


Sat Feb 12, 2011 1:38 pm
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Post Re: Gabapentin
Leone, in my experience with Del, I have to limit the activity during the day or he is too overstimulated at night to be able to sooth himself and sleep. Now that you have all of these activities coming in during the day, do you think he is being overstimulated and canot calm himself down? Remember how our children were when they were overly tired at night? They dould doze and then startle awake and cry and fall back to sleep and do it all over again. Very restless with too much activity. Let me know what you think. If you don't have anyone coming on the weekend, it is a good time to calm down the environment and see if that will help. I would not give up on the gabapentin yet. See how it works when he has a restful day. Hugs to you, Leone, for being such a selfless wife. Nan


Sat Feb 12, 2011 2:22 pm
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Post Re: Gabapentin
Leone,
I'm sorry I've forgotten.....why isn't Dale still on Seroquel 100mg each night?
Robin


Sat Feb 12, 2011 3:41 pm
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Location: Ocala, FL
Post Re: Gabapentin
Nan.... I agree 100% that Dale is like a two year old --- and these are the 'terrible twos.' :roll: I am trying to limit his social exposure to one other person (beside me) per day. I'm also trying to make sure they come in the morning... and then afternoon is more low key.

I started this thread to see what success others had with Gabepentin. I have cut the pill in half but I'm going to cut it again tonight and see if he can tolerate that. I'm not sure his wakefulness is due to the new med. Dale is delusional all day now. It's just worse in the evening.

In fact, as we were having lunch, he was seeing people in the room and describing them.


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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Feb 12, 2011 3:52 pm
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Post Re: Gabapentin
Leone, Frank is also taking 10mg Namenda, and 5mg zyprexa. He's a little upset with me today, I've given up trying to figure out why. I was coming in from the porch and he told me to "get the hell out". Most days he says he has to go home, that seems to be typical with many.

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sat Feb 12, 2011 5:03 pm
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Post Re: Gabapentin
robin wrote:
Leone,
I'm sorry I've forgotten.....why isn't Dale still on Seroquel 100mg each night?
Robin
For unknown reasons, it seems to have stopped working. He was sleeping through the night... but that changed about a month ago. The theory is that after a long time, the body develops a tolerance to the meds and they no longer work effectively. I'm still giving him 50 mg each night.

He has been taking Seroquel since August of 09.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Feb 12, 2011 9:11 pm
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Location: Minnesota
Post Re: Gabapentin
Leone, I'm not following this -- I must be missing a piece. You are not giving him 100 because the theory is the med has become ineffective at that dose. But you are giving him 50 ... why? Are you still coming off the 100 dose gradually, working your way to 0? Or is the theory that 100 is now too much for him but it might be effective in a smaller dose? Or maybe in combination with xanax the lower dose might work? This is kind of confusing. Had the doctor considered a larger dose of Seroquel when it apparently became ineffective at the 100 mg?

After 3 months of experimenting with dose amounts, Coy has been taking 100 mg of Seroquel nightly since 9/15/03. This is another one of those Your mileage may vary situations, isn't it? I just mention Coy's success with it for the sake of new members who might be reading this in the future. Different folks have different drug reactions and it is helpful to hear about a range of them.

Are you going to continue with the Gabapentin for a little longer? Did the doctor tell you what to expect, or how long it might take to reach a therapeutic level in his body?

I sure hope you get some nighttime peace soon!

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sat Feb 12, 2011 10:57 pm
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Post Re: Gabapentin
Jeanne... I'm smiling ... because you are following my thought process to a 'T.' You are not missing anything. We lowered the dose of Seroquel because the higher dose wasn't working and we started the Xanax. The theory says such meds should be reduced gradually.

As you probably know, Seroquel is not supposed to be a 'sleep aid.' It is supposed to calm his night time behavior. Night time delusions have been a regular feature of his illness since the beginning. At one point early on, we went to 125 mg Seroquel but that made him dizzy. (I guess I wouldn't mind that now.)

Drugs are such a mixed bag. Last night, I gave him 1/4 the Gabapentin pill (150 mg). It is supposed to help his lower back pain.

I am now awake in the middle of the night... because he woke in a heavy dream at 2:15 am and I tried to go back to sleep for a full hour and finally gave up. I'm drinking some hot milk and hope that will help me get more sleep. He is already sleeping again.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sun Feb 13, 2011 4:39 am
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