Advice-Why Father is So Hyper, Restless, Not Sleeping

On 2/10/2007 Erniesmom wrote:

My son went thru a period of not sleeping at all when he was first dx.  He was taking steroids for swelling during his radiation, but after he completed that, he is now off the steroids and doing just temodar.  He is doing much better as far as sleeping and getting rest.  The temodar makes him ill on the 6th or 7th day after starting the chemo.  He is on the 5/23 for temodar.  At the time, it was difficult to see him so tired and frustrated at not being able to sleep.  You should consult his doctor to see if it is a medication reaction, or possibly just stress.  I am not a doctor and as my son was dx on july 21, 06, I believe I am not the most knowledgeable person on this board for info.  I just wanted to let you know that my son went thru what your father is going thru and maybe you won't feel so alone.  This is a tough thing to go thru and sometimes it helps to know you are not alone.   I do not post much, but I do read everyday.  My prayers to you and your family.

Mary 

Mary,

Thank you so much for your concern.  It does feel good to know that we are not alone.  I am sorry that you are having to deal with a child, your son, going thru this.  My heart goes out to you.  Kathy

On 2/11/2007 Madeline Ruth wrote:

How old is your dad? This may be partly from depression.... I would ask the physician about maybe taking an antidepressant, and even adding a sleeping pill, like Lunesta to help him rest. Seroquel is a tranquilizer, and may help agitation some, but usually not the best sleeping pill. I do think you could be correctin your assessment about the communication. He probably is receiving information and processing information, but just can't get the language center to communicate back what he wants to say. My mom experienced this and it was very frustrating for her as well. Steroids may help this, but if he is having the agitation already, that may not be an option as it could exacerbate that. Just a thought. Hang in there.

My dad will be 80 in July.  I agree with you on the depression, and at one time they had him on something for depression.  But things just go so out of hand, we insisted that he be taken off as much medication as possible, to see if we could get to the bottom of the restlessness.  Still no answers. 

He was only on steriods a few days prior to his surgery, and for about 4 days afterwards.  My brother (who is a pharmasist) did not want him on the steroids for long as they increase the chance of infections.  Unless the tumor returns, and brain swelling reoccurs, he wants to try and keep him off of it.  (my dad is prone to urinary tract infections)

It is a catch 22 isn't it? 

Thanks for your concern and info.  Anything and everything is so helpful.

Kathy L.

On 2/11/2007 Promises wrote:

Whew! You scared me to death!  As a nurse, if I saw a patient taking phenobarbitol, respidol, lexapro, haldol, ativan, and seroquel at the same time I'd freak.  Where is his tumor located?  My husband's is located in his left temporal lobe and has spread to his occipital lobe.  He has all the same symptoms that your dad has, but the only time he can't sleep is when he is on Decadron.  Ativan has been our life saver.  One will just relax him if he gets agitated. We use one if it looks like he's going to have a seizure to prevent it.  We give him two if he can't sleep (that is if warm milk + benadryl doesn't work). 

I keep the house very quiet.  Only one visitor at a time. Too much stimulation can cause problems.  With the location of his tumor he has lost his verbal skills like your dad and can get very frustrated if he can't explain himself.  I have a numbered alphabet chart that I just printed off my computer to help him communicate.  He's always been mathematically gifted so he is better with numbers.  If he's trying to communicate, I only allow one person (preferably me) to assist him.  Another side effect of pressure in the temporal lobe is selective attention, so if you have 3 people trying to talk to him at the same time it won't work and even makes it worse.  Here's a good brain map that shows what effects pressure/tumor activity is associated with the different lobes:

 http://www.rainbowrehab.com/news/articles/

I have found it to be spot on.  Understanding what he is possibly dealing with has helped be tremendously with providing an optimal environment for him.

 

 

 

My father's tumor was in the right temporal lobe.  Ativan was given to him in the hospital when he had his seizure and then again when he had the tumor removed.  He got so agitated and combative they had to restrain him, which was awful.  So....we insisted no more activan, try something else.  So then they went to Haldol, but then we were dealing with him being so drugged we couldn't bare that either.  We didn't like this drug at all. 

I like your idea about the benadryl.  I would take this any day over the seroquel and will ask the doctor about this.  Who knows, sometimes the simpler things are better.

The web site you referred me to is great.  My father's personality has changed.  And although he can talk and talk and talk, sometimes his words are opposite of what he wants to say.  But most of the time, thru patience, we can figure out what he is trying to convey.

I agree with you on the stimulation.  Whenever it is a lot of people around, he seems excited to see everyone, but after they leave, it is hard for him to settle down. 

How old is your husband?

On 2/11/2007 Jennifer111466 wrote:

Hi-

I may have missed something and I apologize if so, but did your father undergo surgery, radiation, or chemo?

I'm sorry your dad and family is going through this. My mom went through this in the final stages and it was called "Sundowner's Syndrome" but I'm not sure this is the same thing you are describing with your dad.

 Keep us posted,

Jennifer

 

Thanks Jennifer for your reply.

My dad's tumor was surgically removed, and he has just completed his first week of radiation along with chemo.

We were told of the sundowner's syndrome.  What a sad thing to have huh?  How old was your mother?  So she would get like this at night too?

Kathy L.