UPDATE 10/00
Two new medications have been found to help treat some of the symptoms of HD which you might want to discuss with your doctor. These are Olanzapine and Valproate. You can read about what studies, to date, have shown in HD:
The New England Journal of Medicine -- September 28, 2000 -- Vol. 343, No. 13 Improvement of Huntington's Disease with Olanzapine and Valproate http://www.nejm.org/content/2000/0343/0013/0973.asp
Here is a testimony from a mother with 2 sons with HD made on 10/27/00:
Gary began taking Olanzapine about 2 weeks ago and there was an almost immediate improvement. His head and hands had been moving at such a fast speed that it was difficult for him to enjoy a movie or eat. I will not say there has been a miracle, but a definite decrease in chorea. The drug is quite expensive.
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NOTE: The following was taken from several messages from families on Hunt-Dis over a the period of a few years. Their names have been removed. Today, 2002, families just learning they have HD who live in rural areas all over the US are still having primary care physicians prescribe Haldol for HD, no matter what their symptoms are.
PATIENT HALDOL EXPERIENCES
Families have found that doctors who are not experienced in HD have a higher tendency to prescribe Haldol since, in early medical references on HD, it was the only drug mentioned. Current HD literature discourages the use of Haldol except in certain circumstances.
1. My HD wife has had a very bad couple of months and much to my
dismay we've ended up using Haldol for the second time since her hd diagnosis . Her initial dosage was 2 milligrams a day, but within 60 days we were up to 10. The difference was scary.
We have recently changed from Haldol to Resperidone and there has
been a real improvement.
With Haldol, her appetite disappeared which was catastrophic in itself. Also, her dosage was gradually increased over time rather than doubled on the spot. Her posture became extremely rigid from the drug.
We are now in the middle of the changeover to Resperidone and her appetite is definitely returning, as well as her communication skills. The rigidity is still present, but I'm hoping this is a result of the Haldol and will wear off as the drug leaves her body. I think her ability to swallow was further impaired with Haldol.
2. Written summer of 1996: My father was diagnosed with HD last summer of HD and has been on Haldol since about that time. I would also appreciate any information you may have on the drug. He is a walking zombie most of the time! He has lost all interest in life. All he does is pace through the house and nap. Nothing else gets his attention.
3. I insisted that my wife be taken off Haldol and finally prevailed . I
read the doc's notes her medical records which read something like this:
"I have examined the patient and there are no signs of TD. The lip smacking and other symptoms the husband complains of are the natural progression of HD and in no way related to the minuscule prescription of Haldol. I have explained this to the husband, and the husband
understands that treatment will not be based of something he read read on the internet...."
A few days later, my wife was taken off Haldol. For a while the TD became worse. I had learned that Haldol can "mask the severity of it's side effects".
After a week the TD decreased and my wife could eat more. In a month the TD was gone. No lip smacking, grimacing or puffing. My wife is now taking valium and a supplement, her quality of life is very much improved.
From my view, Haldol put my wife in hell. Haldol was discontinued
and I got her back. To me it is evil to prescribe a drug that can mimic and make worse the disease it is treating.
4. My husband was given Haldol the day he was diagnosed 7/'89...within a months time he couldn't drive, he began having panic attacks, became very short tempered and looking back....very depressed. Within 1 1/2 months he was rated at 100% disabled by the military.
We moved to (city) and he was placed in a nursing home by Jan.'90. At
time he was having a lot of problems brushing his teeth, bathing, putting on his clothes and was unable to really think clearly. The panic attacks got worse and he was so angry and frustrated. Every time he had an outburst...up when his medication. The benifit last at most 2 to 3 weeks. Then the cycle would start again.
In April '96 he was transferred a military base. The Dr.s there took the risk and began to lower his haldol. At the same time they addressed his depression and they looked at his G.I trac and found that he had a very very irratated esophogus, and treated for that.
Within a week he went from being almost bedbound to riding a stationary bike, talking, laughing and EATING! He has done so much better since being treated for depression in the six months that it took to lower the haldol to 5 mg. They are now talking about lowering his meds again. Cross your fingers.
5. 3/97: My wife had mild chorea. She could walk and feed her self
with difficulty. Her attitude was she didn't need help. Her independence and chorea was mistaken as aggression.
Contrary to my wifes wishes, I agreed with the nursing home charge nurse that she should be on Haldol. Just a very small 2mg. 3x a day. It seemed to work wonders. But now she had to be fed and she was in diapers. Her speech was very slurred.
On one visit, she held my hand and crying she said "I know I Huntington's." She had denied that for ten years. After a couple of months I saw a subdued, defeated and suicidal person.
My wifes lips would sort of lock shut and she would try to control them by puffing her cheeks. Her tongue would protrude and she would whip her head about to control that. She felt her face was being pulled off.
After researching Haldol and talking to other HD families, I demanded the nursing home take my wife off Haldol. Her doc gave me notice that he would quit. The nursing home said I would have to take her home. The information I had gathered helped me convince the nurses and docs with compelling authority. The doc and nurses backed down. I had to agree that my wife would get 2mg 3x a day of Valium.
Today is a great day! I have my wife back. She feels a little drunk but I can easily understand her. She is sleeping and eating well. She can sit up and stand up unaided. We have a deal. She said "Come visit me every day soI can hang on until this fu***** disease is cured." It's a deal babe.
6. Just wanted to let you know my experience with this drug. My father
was starting to decline rapidly and Haldol was the only drug I had heard was used for treatment so I asked the doctor to perscribe it for my father.
Boy have I never regetted such a descision before! It basically drugged him out to nah-nah land. He was on the lowest possible dosage and for two weeks it turned him into a zombie. A complete vacant look in the eyes, stopped talking, slept most of the time, basically had no clue to what was going on around him. It scared my mom so bad that now she refuses to give him any such type of medication at all.
7. My wife has been taking haldol for five years with no ill effects.
She started taking 1mg tablets 2 or times a day. She is currently taking 2mg tablets 3 or 4 times a day. She says that they help control her movements.
8. My daughter was diagnosed with juvenile HD in 1983-84 time frame, was given a prescription of Haldol to take, told the disease was terminal and the neurologist couldn't help her, and to come back when she got worse.
After a few days on the Haldol, she became totally lethargic, slept almost all of the time and was depressed. By the end of that week she said "Mom, I hate this drug and am never taking it again.....I'd rather live with HD".
Since she was on Haldol a week or slightly less, it only took a few days for its affects to wear off and she became her normal, happy, self again.
(Jean Miller about Kelly)
