Relatively new to the HDAC. I read a lot on here but never post much. I am in a real dilemma and need some help. My dad is 76 with HD and his neurologist has him on effexor, haldol, and ativan. For the last 4 or 5 months, he has been a zombie, literally sleeping around the clock except for when my mother wakes him up to eat meals. The family doctor says its the HD, Neurologist says it is Ativan. He was taken off the Ativan completely and was awake for a couple days and is back to sleep again. I'm at a loss as to what to do. I am the only HD negative in the family of 12 siblings and must take care of him to see that things are being done right for him. Please help. It doesn't make any sense. His neurologist says he doesn't want to take him off of haldol because it controls his chorea and granted it is wonderful for that - he doesn't have hardly any movements at all. BTW, his cag repeat is 39. Thanks.

-)My husband is also on haldol ,he does sleep alot, but is in the kitchen as soon as he hears any noise that food is being prepared. LOL If we go somewhere he does stay awake so I think its mostly boredom that makes him sleep. There really is nothing for him to do but watch t v. He is choking a lot more lately but food is all that he has to think about I'll be sorry when he can no longer really enjoy it. Now he eats a lot of omelets and pasta and drives me crazy following me around in the kitchen but before haldol I couldn't sit at the table with him, he is tall and would keep lifting and moving it with his legs. I don't know how people cope when there is more than 1 person to take care of. Most days I try to remember it won't be that much longer but when you live with a stranger ( and they do become other people) you can only go one day at a time, so take it easy on yourself and accept that there may be no answer.

How far advanced is your dad? Have you tried any other medication for the chorea besides Haldol?

Welcome to the board -

Stacy-NJ

My opinion here--seems as if few patients are alike.

My wife takes tons of medications. Several of them list drowsiness as a side effect. My wife does sleep more (like 12-13 hours at night), but she is not a Zombie. She appears to need that much sleep. I think more than 12-14 hours of sleep indicates a need to discuss meds with the doctor. I don't agree with your family doc.

I believe it is the medications--either the type of dosage. There are alternative meds. When my wife was first diagnosed, I worked with a psychiatrist for almost two years to achieve the proper balance of meds controlling chorea, emotions, sleep, side effects, etc. It takes a lot of work and monitoring. The biggest issue I have to deal with is her constipation, primarily caused by the meds. It takes a lot of monitoring and communicating with the doctor to balance these things.

Ask the neurologist what he would do to resolve the problem. Ask the doc if he would be satisfied if his own dad had HD and slept 23 hours a day. If he/she is not interested in discussing the meds, I'd find a doc that will.

My father, 72, was on Haldol for a number of years. It took care of the chorea but it brought on drug induced parkinson's (tremors in his fingers). He did sleep a lot. Nap in the day and went to bed at 6 - 7 every night. When we went to a new neurologist at a huntington's center of excelence they took him off of haldol. The doctor described haldol as old school medicine. She indicated that Haldol is not used that much anymore. I can't remember what they tried after the haldol but the chorea got considerably worse. After about 4 weeks of bad chorea he started abilify. It took a couple weeks but the abilify got the chorea under control and a few months into it we noticed that the parkinson effects that haldol had brought on had started disapearring as well. The abilify in combination with lexapro was also used to bring some mental issues under control. I think the excess sleeping was a combination of HD, bored, and to some extent the meds. When he was at a function he would stay awake with no issues. At home he slept. He is now at a nursing home and he does not sleep as much as he did when he was home. There are people all around him and the staff does not just let him sleep in his room all day. He usually goes to bed around 8 now.

Thanks. I will be taking him again to his neurologist soon and will ask him about the abilify. Maybe it will help. His chorea isn't bad at all - I guess because of the Haldol but he is so tired of sleeping - he always looks drugged up. I don't know. Maybe its not the haldol. We will see. Thanks again.

Thanks for the post. Dad's chorea isn't bad at all. His anxiety level is always high but I know that comes with HD as I have other siblings showing the same symptoms. My concern is that he has to be woke up for meals. He doesn't arouse much at all even though he sleeps in the living room with the tv on, telephone, people visiting, etc. I hope his neurologist suggests something else that might work. I know there is no quick fix - he will only get worse but to sleep around the clock and not be able to function at all just seems crazy. His neurologist even said that it's the meds and took him off his ativan (he was only taking 1/2 mg. twice daily. We will see when I get home from Disney - leave today with my hubby and girls. Thanks all.

Stacey,

Thanks for the nice welcome. I'm not sure about how advanced he is. We live in a small town and lack of doctors is an issue. At one time, we took him twice a year to Johns Hopkins in Baltimore to their HD center and they were amazed how well he was doing with a CAG of 40. He just gave up his license in January - I think he sensed it was time to. He had some chorea until he went on Haldol and it took care of it - hardly ANY movement at all now but the sleeping is an issue because he never feels rested. He complains he is tired all the time around the clock. He eats well and doesn't have any choking problems yet. So far, we haven't tried any other meds for the chorea - I'm not familiar with HD that much to know what to ask the neurologist. I come from a large family - I have 12 siblings - 9 tested so far and I am the only negative so I will take care of Mom who has Alzheimer's and Dad with HD. Tough job but I'm committed to the end. Thanks for your concern. Renee

Dave,

Thanks for your help. I feel like I am the only person in my family who can help as I am the only negative so far. It's tough, I have 4 daughters of my own and a very understanding hubby who supports me so I don't have to work. I agree that he shouldn't be sleeping around the clock and have to be woke up for meals. When he is woke up, he looks drugged. It's terrible to watch. I leave for Disney today and will still worry until I return that my parents are ok. I appreciate your help. Renee

I just happened to call the Centre of Excellence for Huntingtons we use today asking about problems with a medication. I told him my father in law used to be on haldol. He said haldol makes a zombie out of a person and there are many better choices now such as risperdal, zyprexa,
abilify.
Just thought I would let you know since I just questioned this today.
You are a very caring person.

I take the haldol injection and do sleep a lot, but it's due to boredom....I am also on ativan, but slept a lot before it. I sit at my Mom's during the week and there's not anything for me to do, so I take a lot of naps.

Personally, altho I try to say never say never, I do not like Haldol... my ex was on it and developed the stiffness that can be associated with it. He was lucky in that it wasn't permanant as I weaned him off.. (NEVER take a person off haldpol abruptly). He's been on zyprexa for several years now for the chorea and I think it would be a lot worse without. He is now in a NH. I think the only reason I would want to try Haldol is if all other drugs fail and there is violence involved.. JMHO< Pat

My wife was prescribed Haldol when she was first diagnosed 6+ years ago. The Center of Excellence and her psychiatrist both recommeded changing from Haldol to Risperdal. Risperdal works fine. Her chorea was really bad, but she is now calm--with some parkinsonism in her hands. I'll take that tradeoff any day over chorea.

Sometimes the chorea doesn't need to be treated. If it doesn't bother them, and sometimes it doesn't, I wouldn't treat it. I agree Risperdal is better than Haldol. My wife was prescribed Haldol too but not for chorea. Our doc at the COE here also changed it to Risperdal. Much better, The doc said,"No one under 90 should be prescribed Haldol." I would guess that she would use it after exhausting other choices. Risperdal did a great job with the chorea...much better than Zyprexa or Seroquel have done. I would prefer to use none of those for chorea alone, if the chorea was not debilitating or affecting the the pHD emotionally. They are pretty strong stuff.

tm,

Was your Dad complaining of his chorea? Did his doctor, the one with the prescription pad, think your Dad was psychotic?

Jimmy Pollard
978-851-7321 ext. 2450

Jimmy

Sorry for the slow response - I just returned from 10 days in Disney World. The doc prescribed it for his chorea - he's a neurologist. He seems to know a lot about Huntington's for being located in a small town. Thanks for the response.

Renee

Shar

Thanks for the info. on Haldol. I am calling the neurologist today to see if he can wean him off and put him on something else. This message board has been so very helpful to me. Thanks again.

blackcat

We took Dad off of the Ativan so it doesn't seem to be the culprit. I would say it is boredom except that it is such a deep sleep that he is in like he is drugged up and his blank face seem like it's medicine. Thanks for all your help.

Renee

Pat

Thanks for the info. I'm calling his neurologist today to see if he can switch his meds. This sleeping is crazy - it's like he's just existing and that's all.

Renee

Dave

Thanks for the info. on Risperdal. I will mention it to his neurologist when I call him today. We have to do something. I just returned from 10 days in Disney and Mom said he pretty much slept while I was away. I know HD is bad but who wants to sleep all the time.

Renee