A week of WILD DREAMS!

[psplife]

This was one heck of a week! So many changes for my guy. He has had the most unusual dreams. Dreams that are so real to him and when he explains them to me, they seem so real to me. It is scary. There have been no changes in meds so there is no reason for such a dramatic change. I phoned my guy from my office and he immediately started to tell me about his dream. Almost seemed as if he was still asleep and dreaming. He was being held in a wooden box and his hands chained to the box. He said he had to urinate but couldn't get up and get out of the chains. There were bad men around him and other men in similar wooden boxes. He had to urinate and the his urine was filling the box and he was drowning! He has started to have incontinence issues and is always worried that he won't make it to the restroom on time. Do you think that his incontinence issue is where the dream is coming from? He definitely has so many dreams (almost every night and they wake me) and does alot of role playing while dreaming. His voice sounds like he has an accent. They are so real!! Do any of you see this happening to your loved one? Are role playing/acting out dreams part of PSP? 

NSH

[jzygirl]

What medication is he taking. Janexx 

[psplife in reply to jzygirl]

Atenelol, Crestor, Gabapentin (for leg pain), Zoloft (so he sleeps-he has been on this one for 1 month) and vitamins (C,D,FishOil,Melatonin)

He could not tolerate PD meds and they were removed.

[jzygirl in reply to psplife]

Like NannaB said think you will need to look at the meds. My neighbor is on gabapentin (she has ms) and she has vivid dreams and she can also act them out. Have been in several times and she has got food ready for the children that have stayed over night. But it is all dreams.

Janexx 

[NannaB]

Yes, used to.  My hubby started packing his suitcase in the middle of the night to go on holiday. Another time he thought our son was telling him to go home with him. Our son came into the bedroom to get him.  He went for weeks hallucinating and dreaming until he stopped using the patches behind his ears to help reduce saliva.  As far as I know, he hasn't had a dream since.  Side effects of meds can start at any time, not just when they are first taken. I would read the information that comes with all his meds and see if any of them say they can cause hallucinations or vivid dreams.

I would think the incontinence issues would play on his mind at night.  It must be an awful thing to have to endure.

X

[psplife in reply to NannaB]

Thanks for the advice.

[abirke]

I agree with Jane and Bev. It could be the meds and you need to ask what he is taking and what kind of side effects they have.

B's sleep talking used to be very clear speech....lately not so much.  But I always thought it wierd that he could speak perfectly clear in his sleep but not while awake. 

Worry produces  bad dreams which,  I wonder, can't be worked out in the conscious state! If h'es doing this alot call the dr. You want him to be safe.  If you are not there all the time he may get himself into trouble.

Happy Dreams,

AVB

[psplife in reply to abirke]

Things are getting worse fast and I think some work related decisions (for me) will need to happen here real soon. Ugh. Thanks for the advice.

[abirke in reply to psplife]

I was a school teacher for 15 years.  B quit his job two years prior to diagnosis.  I quit the summer of the diagnosis which was in March of '13.  Although sometimes bored beyond my imagination...I am glad that I quit (in more ways than one) But for B, he needed me full time.

And as most Americans, I did not have a strong savings plan...we lived almost paycheck to paycheck.  The only retirement is my teachers plan....Thank God for it .....You might try part time or if you can work from home ....are other options....

Goodluck,

AVB

[psplife in reply to abirke]

Thanks AVB for the advice. I am definitely going to have to make some career changes asap. My husband starting to have more bad days than good days. Something has got to give. I am already tired and this is just the beginning. Started having financial discussions this week. Wish me luck. Ugh.

Nikkie

[LynnO]

My husband has dreams that are very real to him.  It's not every night, but they do happen.  Says he has a hard time telling what is real and what is a dream. Some of them are VERY disturbing to him. Even afterwards for a couple of days he will ask me if something really happened or if it was part of his dream.  He doesn't act out his dreams though, I have read that an be a  symptom for some people for PSP or CBD.  For my husband, I don't feel this is medication related. He has had these types of dreams before any medication that would cause something like this was introduced. We haven't talked to his dr. about these dreams, I think he feels like the doc will give him another pill!  We just keep talking about them until he feels safe.

LynnO

[psplife in reply to LynnO]

Yes, yes, yes LynnO. My husband does the very same thing. The dream is still so vivid in his mind even days later and I just have him talk with me through it. The tough part is that I wake up so many times because he doesn't sit still at times during those dreams because he at times will act them out. Gets tough when I have to be at work early. We feel the same way, my guy won't stand for adding another pill. I must admit some of those dreams scare him and scare me too. How old is your husband? How long has he had PSP?

Thanks,

Nikkie

[LynnO in reply to psplife]

Hi Nikkie,

I get up  early also (3:15am!) to  get to work by 6am.. Today I'm working from home because my husband was convinced he had to get up and work today.  I was afraid if I left he would have gotten up and left. He's 58 and we think looking back has probably had symptoms for about 6 or 7 years. He was diagnosed with PSP about 3 years ago, after a long battle and lots of drs.  We are very blessed right now with 2 very good neurologist, and a GP who is willing to learn about PSP.  The last couple of years his symptoms have become more apparent. He still has "normal" (for him) times during the day, but is never steady on his feet anymore. I worry about him falling all the time while I work. I'm very lucky that I can do a lot of my work from home, but not sure how much longer that will last. The part right now that upsets him the most is his cognitive level; never normal anymore. Sometimes less fuzzy than other times, and he has a very limited short term memory. Cognitive ability comes and goes all day. Thankfully I have wonderful neighbors who are aware of his PSP.  It is very scary when dreams seem so real that you can't tell the difference between the dream and reality. How old is your husband and how long do you guys think he's had PSP?

Here's hoping you don't fall asleep at work today!!  :  )

Lynn

[psplife in reply to LynnO]

LynnO

Our husbands sound like they are in about the same stage of this terrible disease. My guy is 68 and he was first diagnosed with PD in 2012. He was getting treated for PD but he kept falling backwards, never had a tremor and then the double vision/eye movement delay issue started. Finally after 6 neurologist, neurologist #7 finally figure it out and that was last November 2015. It was a movement disorder neurologist from Baylor Scott and White hospital in Temple Texas. I worry about him falling all the time. He even says his short-term memory is going downhill everyday and the fuzzy/cognitive stuff is different everyday. There are some o.k. days and then there are some darn awful/brutal days. Those dreams and movements at night are just exhausting for both of us. He still wants to go to his company everyday to work and I let him because he needs to interact with people or at least try. One of his employees will pick him up about 8am and then he works about 3 hours (I don't know if it really is work but he wants to stay involved--this is the company he built and that has been one of the hardest things to watch). His brother is his business partner and I am so glad because I don't know where I would be with having to work and then run his company. He and his brother go to lunch at 11am and then he gets dropped off at home to get some rest until I get home. I also have days when I can work from home but I don't know how long those days will last either. My neighbors know about his condition and I know I will need to depend on them more soon. I had one neighbor call me yesterday that the home alarm was going off and it was my husband coming in from lunch----he could not remember the alarm code. So sad. What about incontinence? We are starting to have issues with that--are you all?

Thanks for commenting on my post--it's like a therapy session! So grateful. Keep in touch LynnO.

Nikkie/NSH

[LynnO in reply to psplife]

It's good that he has a place he can go to and feel needed, without you having to worry about him during that time.  I hope your husband (and your brother-in-law) can keep that up for a while. Being busy certainly stimulates the brain. When my husband has something to do even if it's simple, I can tell the difference. He used to be a Field Manager for a construction company, and was always used to working and doing things with his hands. He had to retire, he couldn't keep up with the conversations, plans, etc. He thought he was going crazy. When he was finally diagnosed, it wasn't what we had wanted, but at least it was an answer. It's so much more difficult for him now, as his hands and his eyes don't always work right. It takes him so much longer to build anything, because he can't remember how. He used to be able to do that kind of stuff in his sleep. I have to fight the urge to keep in in a "bubble" and protect him, it  seems to be so much better for my husband to let him do as much as he can for himself. Even if it's pretty scary. No driving though, I draw the line there!  So far, no incontinence issues. From reading everyone else's posts, we're blessed that we've escaped that so far.

This site is wonderful and sad at the same time. I don't know what I'd do without it!

You keep in touch too!

Lynn

[psplife in reply to LynnO]

Hi Lynn

I was thinking setting him up with home projects he can do at a table while sitting down. Just keeping him occupied is better then just laying around. I know he does not feel up to it but some days he does and I need to be ready with a project. When he gets out in the yard, I following him around because I fear that he will have a terrible fall. He has already had some tough falls but thank goodness nothing broken. Whew! This weekend I am setting up one of my bird houses that fell off the tree and broke--I know it will take him a while but he will fix it and feel good about it. Just like you husband, he was so handy and loved working with his hands when he wasn't doing office work. We will continue doing the semi-retire plan for as long as he can tolerate it. 

Happy Friday Lynn.

Nikkie

[easterncedar in reply to LynnO]

All the same for my guy. Very vivid dreams and he often can't tell them from reality, especially since he - always a worker - tends to have dreams about practical, ordinary things, needing to accomplish something as he would have done before he was ill, meet someone, give a lecture, repair a car, plow the road,  so the dreams are like real life and hard to distinguish from reality, except that he can't do those things anymore, which is just heartbreaking. And he then is anxious when he is awake because he fears he has forgotten a task or neglected to fulfill a responsibility and can't quite remember what.

It has generally been happening  with increasing frequency despite his being off almost all medications now.  It definitely happens a lot more when he is starting  an infection - pneumonia or urinary. It also happens when he isn't getting good sleep at night, so he sleeps deeply during the day and dreams very vividly sitting in his chair and has an especially hard time coming out of it.  it's been somewhat better since the night choking is reduced (atropine)  and he is getting more sleep when he should.

Anyway, I think the dreaming is just psp wreaking havoc. So it goes.

Good luck to us all. Love, Ec

 

[ketchupman]

Maybe switch from the Gabapentin to Lyrica?

Ketchupman

[psplife in reply to ketchupman]

He tried Lyrica but made him feel terrible and Gabapentin has been the one he has been on for over a year. What else did your wife try for pain?

Thanks,

Nikkie

[ketchupman in reply to psplife]

Voltaren Gel was a lifesaver.  She called it her salve.  It's Rx only and is a topical gel that is a form of a NSAID.  It provides a little heat to the area, but the drug penetrates into the bloodstream and provides relief like Motrin or any other NSAID.   She also got steroid injections about every two months, which sometimes helped, sometimes didn't.  And the last time they gave her one, they overdid it and caused her to be paralyzed for about a month ... all right before we went on a 2-week Panama Canal cruise.   What an ordeal.    But as I think I mentioned before, when we attempted Stem Cell Therapy, they also injected some of her stem cells in her lower back.   For almost 2 years she has been pain free.  No more injections, no more drugs, and no more Voltaren.  Praise God!!!   She has enough to deal with by having PSP.

Take care and God Bless you both.

Ketchupman

[LynnO in reply to ketchupman]

Did your wife use the Voltaren Gel for her back? I'm wondering if it might help with my husband hand pain. He explains it as a stabbing/crushing type of pain, and he also can't use his hands very well anyway, but especially when they hurt. Hopefully your wife will remain pain free for a long time!  I'll check with his GP and see what she thinks. Thanks!

LynnO

[ketchupman in reply to LynnO]

You can apply it to wherever you're having the pain.  For her, the pain was in her right leg/calf and down into her middle toe.  Even though it was originating with her L4/L5.

My son was also prescribed to use it for his achilles tendon pain. 

Just a little dab is all you use at one time.

Definitely talk to your GP about it.   It's a pretty widely known drug.

Ketchupman

[LynnO in reply to ketchupman]

I will, thanks!

[psplife in reply to LynnO]

LynnO

My husband used it too but the ointment with Gabapentin has given him more relief than the Volteran gel. Everyone is different and so you might need to try a number of products before one makes a hit or at least make a little difference. That pain is just so brutal--it is always on his mind!! Miserable.

Good luck and let me know how it goes because we always will to try something new.

Nikkie

[psplife in reply to ketchupman]

Ketchupman

We are booked and all medical records have been sent to STEMGENEX in San Diego! I hope and pray that we get some pain relief as you all did. The procedure takes place on April 19, 2016 and it can't come soon enough. My guy is counting the days! Wish us luck! Keep all my friends on this PSP site posted. I learn so much from all of you every time and log on--soooooo grateful. 

Thanks,

Nikkie/NSH

[ketchupman in reply to psplife]

Marking my calendar to be sure to pray for you guys on 4/19   

Ketchupman

[psplife in reply to ketchupman]

Thanks Ketchupman! Hope for Les!

[abirke in reply to psplife]

So Nikki, how has the Stem Cell therapy gone? Forgive me if its on another post. I just got back and have a bunch to look at......I hope all went splendidly!

AVB

[psplife in reply to abirke]

Hi abirke

I do see a few changes--clearer eyes, more energy but that is about it. The pain is still a 10. Ugh. I am just being patient and hope that by the time we get to month 6 we will see some improvement. Keep you posted.

Thanks for asking.

How are you doing?

Nikkie

[abirke in reply to psplife]

Is that the usual time it takes for this therapy to take full effect? Well ya'll are still on my prayers...as are all of us ....but I would love to witness a transformation, using this therapy.

B is pretty good speech getting worse, tires more easily, same ol same ol. I must say he has made a few comments that have either elated me or broke my heart but still he was able to ponder and posit his ponderings. any communication is a blessing....

AVB

[psplife in reply to abirke]

AVB

Yes, the stem cell medical group told me it would take 6-12 months to see the stem cells come to life. I am being patient but OMGggeee, hurry up!

My guy is becoming not as talkative. I tell him to tell me everything he needs to tell me before this gets worse. He usually says, "in case I never tell you, you have no idea how much I love you and how grateful I am to have you in my life." Love, love this guy!

You are right, any communication is a blessing.

Nikkie

[abirke in reply to psplife]

Oh Nikkie , how sweet an expression, I do not know.

avb

[Christine47]

You might check the amount of melatonin.  It can cause such dreams.

[psplife in reply to Christine47]

Good to know. Wow, that might be it because I have just added that to his routine about 1 month ago. I can't remember the dose off the top of my head but I know its one pill before bed. Thanks for the tip---I will look into that asap.

Nikkie

[Christine47 in reply to psplife]

Melatonin also may interact with other meds.  I personally had very vivid dreams taking only 3mg.  and I don't take any medication.  umm.edu/health/medical/altm...

[Christine47 in reply to psplife]

I thought you might find this article of interest. huffingtonpost.com/entry/cr...

[psplife]

Thanks for the article Christine47. I removed it from my husband's med routine and it has made a difference already.  Still some dreaming but not like it was a few weeks ago-scary! 

Nikkie

[abirke]

Melatonin, huh? I just added it to my husbands bedtime routine...so far no more vivid sleepwalking like dreams than before. But he's only on 1 mg. I haven't seen any improvement though either...so drop it or double it ? Yikes, after the dreaming thing......!

AVB

[psplife in reply to abirke]

Yes, the dreams freaked me out. I since then have removed melatonin. Lately I have seen him acting things out. For example, he was showing but the water wasn't running and he was actually going through the movements thinking he was really showering. Has that happened to your husband? He will also pretend he is talking to someone when he isn't even holding a real phone. This kind of stuff started happening last week.

Thanks,

Nikkie

[abirke in reply to psplife]

Do keep us posted if you see a continued improvement in his sleep.