What Every Parkinson’s Patient Needs to Know About Haloperidol
A few weeks ago, I wrote about Mirapex, the “golden” treatment for Parkinson’s disease, and the negative effects it can have. Another example of a treatment that people with Parkinson’s need to be aware of is Haldol (haloperidol), an antipsychotic commonly used in hospital settings to treat confusion.
A while ago, I received a note from a gentleman who had just lost his father-in-law to negligence within the medical community. “Negligence” is my opinion, but with the information I was given, I believe that’s what it comes down to.
Before a person goes in for any type of surgery, it has been my experience that the medical staff involved has a decent understanding of the patient’s medical history, including possible treatment allergies. Yet, not all medical personnel are up to date on how a certain therapy will affect someone with a certain disease. And medical staff can’t know every treatment’s interactions or negative effects associated with a certain disease.
Several months ago, I wrote a blog post about Haldol and how anyone with Parkinson’s disease should steer clear of it, as it can be life-threatening to a Parkinson’s patient. I’d like to share one man’s story with you (with his permission) that he communicated to me.
“My father in law lived by himself and was doing fine, alone with PD. He passed away 5/10/10 after entering the hospital 4/28/10, after he tripped going out to his car, to make the 2 hour drive to come and see me, his son in law and his daughter (my wife) and our children.
“A simple 45 minute hip surgery had taken place 4/29/10. They kept covering him with blankets and he always complained he was hot from the shaking, so he would take the blankets off, so they started giving him HALDOL. Why, I don’t know. A day later he was in ICU for 4 days on complete life support. He somehow managed to snap back from ICU and make it back to a regular room, after we found out what Haldol was and told them to stop giving it to him. Even their pharmacist at that point said ‘Yeah, don’t give him Haldol.’ He still had to be on a respirator. I guess the Haldol in pill form was aspirating him also.
“A few days later he died. They said the cause of death was advanced PD. How does someone with advanced PD live on their own, sharp as a tack (this man launched rockets for Nasa and designed aircraft for Boeing, could drive a car fine, talked fine on the phone), but after the Haldol, he became a vegetable and mumbled and didn’t know who anyone was? At least I was there when he died. I am sure glad my wife did not have to see her father dead as she was there with him through the whole thing but had went home for a few hours to rest. His name was John and he is probably the finest, most caring, loving man I will ever have the pleasure of knowing. He was involved in the MJF foundation, as well donating money to help others like him with PD. Thanks for letting me share his story…
“It was your post here that alerted me when my wife phoned from the hospital and asked me to find out what Haldol was. She could not understand the state John was in from a simple 45 minute surgery so she inquired as to what they were giving him.
“I have now been doing my homework. This is what we experienced with John and it amazed me how he could one day be perfectly fine (minus some shaking that his meds controlled fairly well) one day to be basically out of his mind the next day.
“I searched ‘Can PD kill you’ and found this: ‘Just as there is dementia in Alzheimer’s, so there can be in Parkinson’s. This is not a pretty dementia, it is frightening to comprehend. Another problem is that in PD it is coupled with a myriad of other neuromotor problems including possible loss of intellectual capabilities. While this is not death it can be a form of living death for the patient and for the family.’”
If you’re having a procedure done — any procedure — take someone with you. Someone who can speak for you if you’re not able to. Make sure the medical personnel know your allergies, and any other vital information like, “I have Parkinson’s disease and cannot take Haldol!” Get a medical ID bracelet with your medical information on it and/or carry a PD card. As best you can, be proactive in your care. Your life may literally depend on it.
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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Comments
Carol Rothfeld
I have PD. Thanks for the information.
Sherri Woodbridge
You’re welcome!
chris
I also have PD, for 18+ years. I'm taking Carbidopa/Levodopa 25-100, 1 ever hour that I am awake, 2 tabs if it's slow to work. My dr is thinking of the pump so it will work for me, that way if/when I forget my meds it will do the work for me.
Sherri Woodbridge
Hope you find some relief soon!
Clem McGann
A few weeks ago I was on holiday in Spain. I got ill with bacterial pneumonia. I was very ill, I needed an antibiotic, so I went to the hospital-clinica. I just wanted a script for an antibiotic. They insisted that I would have to be admitted. They were far more interested in my involuntary movements than the infection. There is a lot more to this story, which I will skip for now. Next morning when my wife arrived we got out as fast as we could even though I was extremely ill and got the next available flight home. Now reading their discharge report:
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TRATMIENTOS Y EVOLUCION CLINICA
El paciente fue ingresado por una agravación severa de su enfermedad de parkinson en contexto con una infección respiratoria febril que se presentó con múltiples movimientos atetosicos e incoordinados,
Tratamos con Tavanic, mucoliticos y por su trastorno mental con haloperidol y Idalprem. Solicte una Ic con neurologia, El dia siguiente el paciente se siente mucho mejor y parece mas estable, motivo por lo cual la mujer insisten en una alta voluntaria. Le explico los posibles riesgos y que no les puedo dar un "fit to fly".
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It seems that they injected haloperidol without my knowledge. What would have been the result if we hadn't rapidly left?
Sherri Woodbridge
Clem - thanks for your response and it sounds like you made a great decision to get out fast. The possibilities of outcome are downright scary. Sounds like you got home safe and I do hope you are on the mend!
Terri Jackson
My father also has Parkinson's Disease. In January he went to the ER because he was constipated. He was eating, walking, talking, thinking normally. He was very calm and was laying quietly on the examine table. He was feeling yucky from the constipation and after being at the hospital for several hours, he asked if he could get a small dose of klonipin, his normal medicine for when he got nervous and shaky. Instead, one of the Dr.decided to give him Haldol. I questioned why he couldn't just have his normal medication and the nurse said because that's what he needs! Oh how I wish I would have stopped her! The next evening after eating a full meal and watching tv, he suddenly couldn't swallow his pills. He didn't tell mom til the next morning. By late morning, he couldn't talk. By the time he got to the ER he couldn't walk unassisted. They ran all kinds of tests because of the symptoms, but their conclusion was that it was a reaction to Haldol. He had to have a feeding tube and oxygen at the hospital and swallow therapy. He had 6 months of rehab and hospital admissions with pneumonia and critical care units twice.
Mom has had difficulties dealing with the stress and I had to quit my job 2.5 months ago, to care for him when he came home. We are so lucky that he is alive and we wish everyone knew the dangers, and that ER doctors were more careful with their quick decisions.
Sherri Woodbridge
Hi Terri - I am so sorry to hear about you dad but so glad nothing more happened. You were there helping him and what happened was not your fault. The nurse was obviously uneducated as well as the doctors who thought they were doing what was best. Another case of the doctor - or nurse - doesn’t always know what’s best. Thank you do much for sharing your story.
Mel
How can I verfiy that my mother with 20 years of PD was given Haldol ? On July 13th she was speaking and walking on her own. She was complaining about stomach issues and was brought to Hospital. They found a blood clot in her lungs and treated this for several days in the hospital but neglected to give her the PD meds she takes every 4 hours for the past 15 years, my mother started to get aggressive and they sedated her after that my mother has been unable to speak , walk or eat and has not lost a total of 35 pounds in the course of 2 months she weighs in at 124 pounds. I strongly believe after reading all of your issue with family members that they broke my mother to the point of no return and I am heartbroken. They are now saying she has a mental disorder she did not have this on July 13th when entering the hospital
David J Fischer
This is incomplete information. Haldol can be used with PD patients successfully depending on the severity of their disease. Anti-psychotic drugs work by antagonizing the dopamine receptors that are be agonized by medications like Sinemet, so naturally flooding the system with these antagonists MAY worsen extrapyramidal symptoms. For someone with PD that may result in being in a down state where you become rigid, and if the disease is severe enough, this could precipitate a comatose state requiring intubation. It is by no means guaranteed that this will happen, and with most patients the severity of the down state that is induced is relatively minimal.
There are surely cases, like those you describe, where the result is dramatic, and in those situations, proper consultation of a neurologist by the primary medical team would likely have avoided this particular outcome, but these are the exception and not the rule.
I agree that people should advocate for themselves, and if incapacitation is possible, have someone to advocate for them. However, as a medical professional, I take offense to the blanket statement of physician negligence because the reality of the situation is that third party observers rarely have full insight to the details of medical care.
Maria
You should NOT get haldol when you have Parkinson's disease because it will worsen it and it could lead to death! Haldol blocks Dopamine in the brain and Parkinson's disease happens because of insufficient Dopamine in the brain. Does it make sense now???
Vicky Nichols
My Dad has parkinsons ,in a rehab center now ,they are giving him Haldol NOW! Would this make him violent?
Sherri Woodbridge
I sent you an email...
Mateusz Pogorzelski
I'm just going through the identical situation with my grandfather. He is suffering PD but not like a very heavy case. The thing is that he went to the hospital with light heart failure. He was trying to take off his Holter monitor so they gave him haloperidol. The next day he turned into the vegetable. He was living by his own 88 years old, energetic person and now he is stuck into the bed, cannot even move. And it turned during a ONE NIGHT... and now doctors say that it is because he is old and has heart failure. I cannot believe in that, things like that cannot happen THAT suddenly. Sherri, can you email me? I would love to talk to you. Thanks!
Sherri Woodbridge
Email coming...
Sara Edwards
My father had mild Alzheimer's. He was admitted to the hospital for a necessary procedure and had to go under general anesthesia. The night of recovery he was agitated and wanted to get up and go home. They gave him Haldol on 3 occasions. He was eventually discharged but is now almost unable to function. Shuffling gate, minimal speech, loss of motor control. He was not like this before the Haldol!! Do these symptoms get better?
Sherri Woodbridge
Hi Sara - I am so sorry to hear about your dad. From what I have read and personal stories people affected by this drug that have been sent to me leave me to believe that the symptoms don’t get better, however, that doesn’t mean they don’t for some. I would talk to your dad’s doctor and ask what they expect, if you haven’t already. I really hope you fin some help and your dad improves.
Stacy
My father is now in assisted living needing 24/7 care after the ER gave him 3 meds including haldol to calm him down before a CT scan. It is heart wrenching. I believe any dopamine he had was depleted He rarely makes any sense he is in his own world. He cannot walk anymore or take care of his most basic needs. Our attorney said it would be too expensive and hard to sue. But we are writing a letter.
Yano Garcia
I am I a situation very similar to what everyone is describing.
My father has Parkinson’s.
He went into the hospital for knee surgery and it all went down hill fast!
Haldo was given in the hospital after the surgery to keep him calm, after that the rapid decline started.
Confusion, paranoia, eating problems, feeding tube.He came back after a month and things started to improve and another trip to the hospital and some Seroquel and all the confusion is back with a list of other major issues!
This broke my heart reading all of this!!
It’s is so terrible that this keeps happening.
Robin Cannette Slusher
My dad had been placed on Sinemet to “see what it did”, he had not been diagnosed with PD. He started having hallucinations and he got pneumonia. He was taken to the hospital and given Haldol. He got much much worse. He believed the nurses were trying to kill him and that the devil was in his room. Just horrible. My question is; does the Haldol interact with the PD itself or the PS meds? In his case Sinemet.
Nancy Kirkpatrick
I am so shocked learning about haldol and PD. My husband was diagnosed with PD in September 2009 and dementia in 2016. Tim was disabled from his dental practice in Janurary 2010 due to his PD. He began having hallucinations in late 2017 and was put on NuPlazid. It worked for about a year and a half but the hallucinations broke through and started to become very active in August 2019. The neurologist increased his NuPlazid and the hallucinations became worse. They next added seroquel. His hallucinations became violent and scary. He was admitted to the hospital on 8/21/19 for "a couple days to adjust his meds". He walked unassisted into the hospital and had ben at a plateau for about three years with his PD.
After two days in the hospital I arrived on 8/23 to find about eight people in the room tying him down and sedating him with haldol through a syringe. Tim had a delusion he needed to be seeing his patients and was being held captive and grabbed a nurse. (he is a disabled dentist due to PD) The next day passed uneventfully. On 8/25 I arrived and Tim was tied down with mitts on and once again sedated with haldol. When I arrived on Monday 8/26 the nurse told me he had spit his pills out and they sedated him with "a new drug and they gave him a good dose of it to get it into his system". I asked and was told the drug was atarax. Tim was sedated for five days every twelve hours with 50mg of atarax. On Friday 8/30 his admitting doctor came in and could not believe what he saw. Tim was a shell of what he had come in as and had lost ten lbs. One can barely eat or drink when sedated 24 hours a day and has no IV. The doctor stopped the atarax and Tim did not get the PM dosage. (his last pill was at 11:00 AM on Friday 8/30). He did not wake up until over 48 hours had passed. Sunday AM 9/1 as I sat with my sedated husband his right eys tried to open at 11:45. His eyes were both matted shut after being sedated nine out of ten days. Tim was so weak mentally and physically. He was transfered to a rehab facility on 9/5/19 in the evening. Here he became weaker and weaker. There was no plateau but a constant slow slide downward mentally and physicall.
When rehab released him on 9/21/19 I was told he needed to be in a locked facility as he was "noncompliant", Tim would try to get up from the wheelchair he was kept in and out of his bed to go to the toilet. Why wouldn't he? He had been able to do that his whole life and had no memory of the horrible hospital sedation. At this point Tim would only qualify to be in memory care and not the assisted living side. He was placed in memory care on 9/21/19. Many of the medtechs there said they didn't understand why he was on that side when he first arrived but after a few days they could see why. Tim was continuing to slide downward. Tim was becoming less and less able quickly.
I brought him home on 10/6/19 as I just could not stand driving to see him twice a day and watching the continued slow decline from afar. Tim has been home two and a half weeks and he was placed in hospice care on 10/22/19. I cannot believe this horror. He has gone from 'adjusting his hallucination meds for a couple days' to hospice in two months.
Nancy
I just went through the Haldol nightmare. My husband had Parkinson's. Had him taken to the hospital because I thought he had pneumonia. When he went in for an x-ray in the ER, they gave him a Haldol injection. He was unaware of anything for several days. Could no longer eat, could not talk, couldn't take levodopa/carbidopa. It was horrible. The neurologist at the hospital told me the Haldol was out of his system. He still couldn't talk or eat. He was starving to death, couldn't drink. His living will said he didn't want a feeding tube plus he I felt he was too weak to get through feeding tube surgery. After 2 weeks of laying in the hospital, I brought him home on hospice care. He died a week later. I've been telling people to put it on their allergy list.
Sherri Woodbridge
Nancy - I am so, so very sorry to hear about your husband. And your experience. My prayers are with you...
Haldolkills
Hospices give it out wantonly regardless of diagnosis. It's cheap and quick and on to the next.
Don't trust doctors.
justin bell
I'm in icu now because the hospital gave him haldol and he has Parkinsons. He was on a vent and sedated for a whole week. He is now off sedation and the vent but doesn't make sense with his gibberish, also he is completely incoherent.
Andrew
Ya maybe someone can tell Dr Geetha Priyanka in Melbourne Florida not to give Haldol to my Mother that has Parkinson's and or Doctor Patel that gives her Levodopa and if he is giving her the Haladol he should loose his licence indefendly.Hes a Nerologist and her Husband should be in Jail.Hes been giving to her on and off for 7 months.Now once again shes in the Hospital and then transfered to a nursing home.The Hospital was even giving to her still knowing that they should never do that.My Moms words exactly where get me out of here they are trying to kill me after she sufferd a major stroke allmost 2 years ago.Her Husband and his daughter and her husband have been doing this to my Mom all year.I myself am hily alergic to that drug.Her husband also new that and I classafie that as atempted murder period.Shes violent,out of control and jerking around with her tough out when he gives it to her.I told Palm Bay Hospital That and they did not do anything to reverse side affects or the shock she was in.Gee I dont think benadryal is very hard to administer.Now I know why everyone that is retired will never go to the Hospital or Doctors for that matter.They should all have it jammed in there mouth to see how feels nomatter what.
Sherri Woodbridge
Andrew - i am so sorry that you had such a bad experience regarding your mom and her hospital care. I hope as time progresses you will find better care and help for your mom.
LEE YOUNG
My ex- wife was taken to the hospital for a panic attack. I followed in my car to the ER by the time I made it in there they gave her Haldol to calm her down. I told the medics that she has Parkinson's and her medical history. Now she is in a nursing home unable to function. She is not able to speak, can't walk, barely eat and drink. I walked into the nursing home today and I was so angry, She was in a bed without bed rails, they put a 3.5 inch gymnastic mat by the bed so if she fell Ellen would fall on the mat. Her daughter put her mother in this nursing home. She Is not educated about Parkinson's. Ellen and I lived together even after our divorce I took care of her for over 20 yrs. I am so angry and heart broken when I visit. Since we are divorced I have no rights. I can tell you I called the Adult Protective Services and finding a lawyer. This is inhumane. If you have a story speak. this has to stop are loved ones are dying.
Joyce Dupont
My husband went to a hospital for low blood pressure. I asked to have him observed overnite to possibly find out a pattern for his falling due to the blood pressure. Instead of observing, the nurse didn't want to bother with him and gave him Haldol. Atty says hard to prove a long term problem as it clears in 10 days. My husband spent a WK in the hosp then 2-3 wks in rehab facility. He didn't know me or what even a clock was. Never was able to walk freely afterwards. He died this past Christmas eve. These last 3 yrs he was not stable to walk without assistance and was basically lost his freedom since that Haldol. Attys are wrong, Haldol kills Parkinson patients eventually.
John Sawkins
A doctor friend of mine who used to work for AstraZeneca, on learning i had been prescribed haloperidol to treat a hypermania (in the UK), smiled as he told me that in the trade it was referred to as "instant Parkinsons". Might explain why they administered procyclidine to deal with my side effects, I thought. I took the drug 20 years ago, but luckily went cold turkey after one month (Incidentally, I wouldn't advise this course of action: try tapering off it gradually instead.
ted bernstein
was on haldol., very low dose, for tourettes.
stopped over 20 years ago afted developing permanent side effects, tremors in my handns andmovents of my legs and feet.
have now been diagnosed with parkinsons.
STAY AWAY FROM HALDOL.
IT SHOULD BE TAKEN OFF THE MARKET.