User Reviews for Pimozide to treat Tourette's Syndrome
Pimozide has an average rating of 5.9 out of 10 from a total of 22 reviews for the treatment of Tourette's Syndrome. 45% of reviewers reported a positive experience, while 27% reported a negative experience.
Reviews for Pimozide
Orap (pimozide) "I was diagnosed with a "medium' case of Tourettes Syndrome when I was seven years old. I'm now 23, and in the times before I started Orap about 4 years ago I was on almost every single medication that can be used for Tourettes. In addition to the tics, I have severe anxiety/depression problems, so it complicates matters. I've seen many psychiatrists, and they have all done their best, but in the end, it really came down to finding the right combination of drugs. The Orap is good. There is no cure for Tourettes, yet, but I have faith they will find it. I believe very strongly that medication is not the only way to treat it. Sleep, diet and exercise are all important. But of all the tic medicines, Orap helps the most."
Orap (pimozide) "I have had Tourette's since I was nine years old. I remember blinking non stop and knowing that something was wrong. I am now 30 and have been on Risperdal, Haldol, and Orap. The Orap is the only thing that works without any harsh side effects. Mostly I have facial and vocal tics that get fairly severe under stress. The Orap eliminates all but the most severe tics. I am extremely thankful for Orap and how it has helped make my life a little more normal. I also suffer from anxiety and OCD."
Orap (pimozide) "I am a 41 year old male who was diagnosed with TS when I was 12. I had medium severity and was on Haldol for 3 years, I was a zombie. I changed to Orap and it was like I was born again. I still take it after all these years, 2 mg per day and have minimal to no tics noticeable. Teva assistance program gives free medication to those who are eligible, I am on this program. "
Orap (pimozide) "I'm a 38 year old man who has had Tourette's from the age of 8. The only medicine I have found to control my tics almost 100% is Orap. When I take the medication my tics are almost none. I am very lucky not to have the speech tics. Mine are mostly ticks in my eyes and face."
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Orap (pimozide) "I was 7 yrs old when I starting with tics & when I was 12 I was diagnosed with mild Tourette Syndrome. I gained 100lbs plus during the 15 yrs that I was on Orap, I developed medicine induced anxiety, cotton mouth, fatique/sleeping all the time, my menstrual cycles were messed up, my thought process & decision making was not balanced, I developed temp. infertility, my prolactin levels were elevated dangerously high. I never should of been on Orap to begin with, Orap is for severe cases of Tourettes after ever other medicine has been tried..Orap is a last resort at a very low dosage...Please ...Please proceed with caution if you do choose to take this medicine. At age 44, I am blessed to be here today to type the rating of this medicine."
Orap (pimozide) "I was diagnosed at 18 but has had mild tics since I was about 5. They got much more intense as I got older and I was first put on a few other drugs but none really helped. I'm on 8mg of orap a day and it helps for the most part until I'm in public or a stressful situation but has generally helped. I started getting muscle spasms as a side effect but was put in benzotropine for them and they've gone away now. It makes me a bit drowsy and I had dry mouth for the first few weeks but with water and coffee I'm able to function fairly normally! My tics are still obvious but improving. Overall it's been helpful."
Orap (pimozide) "I am glad to share with you that this drug has saved my life, I used to tic a lot but after using 2mg of Orap 90% of my tics are gone. Please start with low dose at first so that your body can get used to it."
Orap (pimozide) "My son was diagnosed with Tourettes and he is 10yrs old. The medicine has helped a little with his tics but still does some. His anger is getting worse while on this medication and has gained alot of weight in the half a year he has been on this medication. "
Orap (pimozide) "I was diagnosed with Tourette's Syndrome when I was 11 years old. I had tried a couple of medications before this one that didn't help too much. Although this medication helped tremendously, the side effects were too much. My appetite greatly increased on top of gaining weight from the medication itself. I had no energy and had gained 100 pounds within a year. I am now 25 years old and this medication changed my relationship with food. I recently had bypass surgery due to overeating throughout my life as well as an inability to lose enough weight trying methods like healthy diet and exercise. Although this medication is helpful treating the tics, please use with caution."
Orap (pimozide) "I took Orap in my early 20s. My tics were minimal and I only needed Clonidine in my early 30s. I'm having a bout right now and am so scared to take the Orap again due to the side effects I've read up on. Don't know if I should just wait it out or what. I've been stuck in my hose since the end if January. Can't take the stares."
Orap (pimozide) "I was diagnosed at the age of 14 with Tourette's Syndrome, and I am now 15. Before Orap I had a severe tic to my right side that would happen usually when I was stressed, or something was out of place, but sometimes at random. Though this medicine has helped me tremendously, I can say I am much better off without it. The side effects were just too much. I became void of any energy, and would stay in bed for more than 12 hours a day. I also started to experience syncope. I decided to stop taking Orap for a couple of weeks to see if the side effects would cease. I felt mildly better, but I developed a tic similar to what you would see in a person with Tardive Dyskinesia. I'm going back to my doctor soon to discuss what has been going on."
Orap (pimozide) "I'm a 65 year old female who has just been diagnosed with Tourette's Syndrome. Only been on medication 1 week very low dose. I've already gained weight and experienced dull mind also energizing. Orap scares me for my age. My tic is a throaty burping sound. This whole experience is rare and unbelievable. My tic is slowing somewhat."
Orap (pimozide) "My son was diagnosed with Tourette syndrome at the age of 6 and he is now 12. He has taken everything clonidine, klonipin, seizure meds, topmax, haloperidol, and a host of other meds at first the Orap was a God send because he went from a lot of meds to only 3 meds. His doctor had a hard time getting approval at first because he wasn't quite 10 yet, but after the approval, for the first 6 months it worked well, my son began to gain a little weight but it was a good thing because he lost so much with the other meds but after that first 6 months his tics began to increase."
Orap (pimozide) "My experience with Orap was horrible. It was like taking speed for me. I was so Hyper I couldn't sit still long enough to eat a bowl of beans, I had to be moving constantly. I told the doctor how they affected me. He said Orap does that to some people so he put me back on my old meds that didn't work. Klonopin and Haldol. "
"I was diagnosed with moderate Tourette’s when I was 7 years old. Shortly after, I was also diagnosed with depression and OCD. I first tried clonodine which made me a complete zombie. I would fall asleep standing up in the middle of the school day in elementary school. My pediatric neurologist suggested orap. I’m almost 28 years old and have been taking orap for 20 years and it has absolutely changed my life. Some of my tics when I was younger caused me to be in so much physical pain. Since taking orap, my tics are barely noticeable unless I’m overly stressed or anxious about something, occasionally in a public situation when everyone is looking at me they can get bad too. Otherwise, nobody ever knows I have Tourette’s. This medication changed my life."
"I have been taking orap for 4 years for tourettes but recently I started developing terrible side effects, I would start gagging constantly. I had the same effect on haldol, gagging every few minutes. I had my Psychiatrist stop the Pimozide and the gagging went away. I would rather have the tourettes than the side effects."
"The side effects were awful. I was not able to get out of my bed because I was sleepy and tired all the time and at the same time I was restless. And I just didn't stop take them immediately (after the first week) because my psychiatrist said it had no side effects at all and I trusted him 100% on that. I thought I was just tired because I had just finished the 1st semester of university. I stopped taking them 2 and a half weeks later when my mom suspect it was probably the medicine causing me all of this. And it didn't even help me with my tics at all."
"I was diagnosed with Tourettes at age 4. Very severe tics so I was put on Pimozide @ age 13. Horrible medication! I DO NOT recommend this medication. It is the worst medication I have been on. The side effects are worse than having tics. I had been on it for over 10 years and could not keep a job. I kept getting fired. I couldn't sleep no matter how hard of a sleeping medication I was on and I couldn't even be put under for surgery because their inducer didn't work. Its all because of Pimozide!!! It caused me to have SEVERE insomnia to a point where I would not sleep at all for a whole month at a time (I'm serious). Along with the severe insomnia, I was super sick all the time and caught every sickness that was going around. It came to a point where I got hired and lost the job all within 3 WEEKS. Again, because of Pimozide. I stopped taking it and I have been off of it and also medication FREE for 1 week now and I am sleeping on my own and have way too much energy for my own good."
"38 year old female diagnosed at the age of 11. This medication took two weeks to kick in on 2mg. I was sleepy all the time and never took away anger and rage. However it did stop the tics, it has prevented me from any vocal noises and kept away broken toes as I grind my toes into any type of surface. Haven't been on this pill in about 18 to 20 years. Definitely wouldn't go back to it, seeing there is other medication that keeps the tics away, works within the hour of taking, gives me energy, keeps me happy, takes away the stress and anxiety."
Orap (pimozide) "My son has just started 1mg of orap a week ago with no improvement. Waiting to go up to 2mg after another week. He has tried lots of meds and nothing works orap is our last hope but I'm worried this is not working also. Should we see some improvement yet"
"One time, I experienced something called complex tics. My jaw wouldn't close, it moved to the side and locked in place, and my tongue kept going to the back of my throat, making it difficult to breathe and causing me to vomit mucus. On one occasion, it lasted for too long (usually about 5-7 minutes), and the pain was so intense that I was screaming, prompting my mom to call an ambulance. They took me to the hospital, and while I was there, my eyes were shaking, and I couldn't stop my arms from squeezing. At one point, my arms were moving on their own. To distract me from my jaw opening, I had a rag in my mouth. Then, suddenly, my jaw opened again, and my tongue went to the back of my throat, making it impossible for me to breathe. My whole body turned purple, and all I could hear was my mom crying and my aunt screaming for help. A nurse shoved a tube down my throat to help me breathe, and they called my neurologist. He said it was a side effect of being on the medication for too long. Therefore, I DO NOT RECOMMEND this medication because I could have died."
Orap (pimozide) "I am an 18 year old male. I fond out I had Tourette's Syndrome when I was 15 and I was put on Orap. Orap helped me, my girlfriend says my tics aren't that bad."
Orap (pimozide) "It is the only medication that has worked for me. Others such tenex and risperdal made my tics increase 10 fold."
Reviews may be edited to correct grammar/spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest are not published. This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.
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"They did significantly reduce my tics (which, given their severity, prevented me from socializing comfortably), but they also took a significant part of me. I only took it for two years (I stopped about 6 years ago) but I still have the general lack of emotions from when I took it. Before taking it it was not like that at all. Perhaps it has been something positive, because the absence of happiness is not bad. But it is true that living like this is extremely boring and empty. It's basically like being dead but alive."