Editorial Note: This post is by DG. It’s number three in the Abilify series, following Dodging Abilify and Abilify from the Inside Out.
I was diagnosed with Tourette Syndrome (TS) as a child. It was always manageable. I did well in school and was actively involved with music programs at church and school. At 17, my tics suddenly became severe and despite extensive testing, doctors were unable to figure out why.
After months of waiting, I was treated by a top neurologist and was prescribed Abilify to help manage my tics. Only an hour after taking my first dose, I started experiencing anxiety that was so scary I already wanted to get off the drug. I had an ominous feeling not of this earth that something bad was going to happen. A voice in my head kept telling me I wasn’t going to get any sleep, so I developed a fear of insomnia. Despite my shock about the fact that a medication could be this horrible, my neurologist wasn’t at all concerned about my initial reaction, and told me that I needed to give it a chance to work. Since she didn’t give me any other viable options, my parents and I agreed I would stay on the medication.
After a week, I started noticing bizarre changes to my tics. I started experiencing tormenting tics that no longer had the usual sense of satisfaction afterwards. No matter how much I would tic, it didn’t satisfy the urge. What made these “new tics” even more uncomfortable is that they felt like they were only “half” coming out, which isn’t normal for TS and I had never experienced before.
My neurologist didn’t recognize this as serious. At the time, my family and I trusted her judgment. I thought the medication was only half suppressing my tics because I was taking a low dose. The neurologist’s solution was to raise the dose. Although this did help these uncomfortable changes go away at first, the mental torment progressed. I wish the neurologist had listened more closely to what I was telling her and picked up on the fact that something was terribly wrong.
The drug had basically given me “tormenting improvement” and that should have been a sign that no real improvement was being made. I couldn’t leave my house and my quality of life in many ways was even worse.
I began to experience visual hallucinations that frightened me because of how realistic they were. Every night I would see bright flickering strobe lights that lit up the whole room. My neurologist didn’t see any problems with this, and informed me that this was “simply my brain adjusting to the new medication.” She was completely wrong, because my hallucinations only got worse from there. Years later, I still experience serious hallucinations, sometimes on a daily basis. I see faces in the carpet, I have seen a demon that looks like the grim reaper lurking in my doorway, and I see photos on the wall change to have satanic faces. I have even seen my private parts fly out of my pants, through the air, and go crashing out the window. It is absolutely embarrassing and bizarre that a medication has a side effect like this!
I developed severe restlessness that forced me to pace constantly, and at certain times, I was even unable to sit and eat at the table with my family due to extreme anxiety. I developed a severe loss of interest in everything. Even with my tics now being suppressed, I still couldn’t sit and play the piano. I literally lost my ability to experience pleasure. Every day I woke up with an intense dread of having to face the day. I had such severe exhaustion as if I had never even slept. There were times I felt too exhausted to even breathe and I had to crawl on the floor because I was unable to stand up. My parents didn’t realize what this was at the time because my extreme exhaustion presented itself as if I was drowsy and sedated from the medication. When I tried to do Yoga, the longest I was able to hold a pose was a few seconds. I developed hand and full body tremors and other involuntary movements such as my leg kicking by itself.
I nicknamed Abilify “the fear drug,” because of the unbelievably severe and debilitating anxiety side effects I developed all throughout the treatment. From the very moment I got on Abilify, I lived my life in constant fear of everything, even my little dog and air! I would become paralyzed with fear even when I walked outside to get the mail. My teeth were constantly chattering even when I wasn’t cold. Every evening, all I could do was lie on the floor and shiver and tremble convulsively. My life on medication was nothing more than one big panic attack, and it would literally take me a whole week to recover from the trauma of leaving my house, even to simply see my doctors. Abilify put so many thoughts, fears and feelings into my head about Satan, hell and torment. My dreams were made as much of a nightmare as my reality, giving me no escape. It blurred the lines between dreams and reality, I often questioned whether I was actually sleeping or awake.
I found the treatment to have a complete “dog chasing its tail” effect the entire time. Abilify would help with my tics, only to very quickly replace them with anxiety that was as severe as the original symptoms being treated, which in turn aggravated the tics to bring them right back again.
One of the most concerning side effects I experienced all throughout treatment was very bizarre breathing problems. I was forced to constantly think about my breathing. My lungs felt as if they were no longer “automatic” and had become “manual.” It felt as if my lungs had stopped breathing on their own and I had to constantly control my breathing to keep myself alive! The torment from this aggravated all my other symptoms, and the distraction it caused me made it extremely difficult to even function.
Most of my side effects locked me inside a hell that only I could see, and since I could not tell others of my suffering, I simply suffered in silence. To everyone around me, I looked far healthier than I really was. At the time, I was so delusional, I actually believed I was having minimal side effects and lost my ability to recognize that the drug was hurting me.
Abilify caused me such severe anxiety that in order to stay on it, my doctor added an SSRI to counteract the side effects. The SSRI wasn’t helping near enough and my doctor wanted to keep raising the dose, but my family and I decided against it because I had severe headaches that felt as if my head was going to crack open. It only further aggravated my restlessness and even more alarming was the fact that I was now developing obsessive compulsive behavior such as touching rituals.
My doctor’s answer to any concern I ever had when reporting side effects was almost always “to tough it out” and that “the side effects will eventually level off.” There was one time she even said this while I was experiencing life threatening reactions from another medication such as severe nausea and vomiting where I was unable to keep a sip of water down. It got to the point where my mother was literally embarrassed to report back to me how the neurologist was answering our concerns about the medication in her email responses.
Before treatment, I was one of the few patients with TS to not have any of the co-morbid conditions, which is usually referred to as TS only. Because of medication, I went from being one of the few without OCD to developing one of the most severe cases imaginable! Medication has caused me the “OCD on steroids.” Because of my drug-induced OCD, my life consists of one compulsion after another, many of which do not make any sense. It can take me hours to be able to complete even the simplest of tasks. I cannot just enter or leave a room, lie down to go to sleep, etc. without activating countless compulsions which I need to perform. I have lost all self-control and I am forced to give in to every single compulsion, no matter how much I try to fight it.
I also developed a severe case of ADHD. I was a 4.0 student and now it can take me an hour to write a simple sentence or process new information. I space out and am so easily distracted that I have to listen to things several times because I miss half of the information. My memory has been greatly affected because at times I can’t remember anything. Abilify was supposed to help me get through school by suppressing my tics, but quickly deserved its purpose by interfering with my learning abilities. I wish my neurologist would have been more concerned about the development of my new co-morbid conditions while on the medication. She realized how it was “sacred” for me to have TS only, and she so easily let the medications ruin that for me.
After over a year of drug therapy, my family and I decided I needed to discontinue all the medications since they weren’t helping. My neurologist agreed and I got off each medication slowly. Our only preparation was that she told us it might be “a little bumpy.”
A nightmare began to unfold. The side effects got worse as I got off the medication and I began experiencing the withdrawal symptoms. I became a completely different person totally unrecognizable to my parents. I was suicidal, homicidal and paranoid delusional and remained that way for over 4 months. My parents had to watch me 24/7. When they turned to the medical community for help, the doctors’ only solution was to put me in an institution and medicate me further. My parents refused to do this to me since they loved me and now realized it was the medication doing this to me; so we toughed it out as a family.
Years later, I still have all the side effects of medication. Even the mildest of side effects, including dilated pupils, are still so prominent. It’s very important to note that I’m now off all medication and have been for a few years. Sadly, I develop new side effects on a daily basis. I have a wide variety of new involuntary movements such as: my torso twists, my back arches backwards, my mouth takes loud dramatic gasps of air, my eyes rapidly shake back and forth and my muscles slide out of place! Many of these occur at the same time as some of my tics.
A lot of the ways that I am able to distinguish between my tics and Tardive Dyskinesia involve aspects of the movements that only I can experience. The tics feel like you’re doing them to yourself compared to Tardive Dyskinesia which feels more involuntary. For example, I developed neck movements, including one where my neck thrusts back by itself. I brought it to my neurologist’s attention, but she was not concerned because she thought it was normal for TS and simply dismissed it as being a tic. But I’ve had neck tics before and this did not feel like a neck tic. The neck movement had some aspects to it that are not normal for TS including how the actual movement itself was painful.
Even my original TS progressed, not only in severity, but also many new tics I never had before medication. What is really upsetting is the fact I now have severe Coprolalia, and never swore in any way or form prior to medication.
The biggest concern of all is how my mental health has been left in absolute ruins. I have such severe emotional symptoms that there are times when I have been unable to eat, sleep, or go to the bathroom without hysterical crying, screaming at the top of my lungs and violence that I did not have whatsoever before medication. My mental health since medication has drastically changed and is not at all normal for TS.
With everything being so different, it is hard to imagine why my neurologist didn’t pick up on any of this. I experience countless emotions and feelings that include: depression, anger, jealousy, hatred, disgust, happiness, calmness, indignant, paranoia and euphoria, none of which are my own.
I now have constant voices in my head that never stop talking. The voices often “fuse” together with my new tics and compulsions creating hybrid illnesses. Medication has transformed my regular urges to tic into voices that now order me to move my body. For this reason and others, my TS is now more of a mental illness than it is a movement disorder. I now spend all my days pacing around the house talking to the voices in my head. To this day, I stand to eat and sleep on the floor and I am unable to leave my house.
Not too long ago, my mother told my neurologist that I was still severely disabled. My neurologist seemed surprised. Had it not been for my family’s love and support, perseverance and research about medication, we still to this day would have no idea the medications are to blame, because my neurologist barely told us anything about their safety and did not listen to any of our concerns throughout my entire treatment and thereafter.
Just want to thank DG for this really thoughtful & thorough report on his own personal nightmare! A lot of what you’re going through matches the Abilify reports on RxISK.org in last week’s blog. We didn’t have much input, however, from people who started this drug as teenagers, and none from people with Tourettes.
We collected four reports of Tardive Dyskinesia, the involuntary-movement syndrome that often persists long after the drug is stopped. They were all in people taking 15-30 mg doses, and all in middle-aged women. I thought there might need to be a special warning for older women on this drug. Maybe so — but now I think anyone on these higher doses may be at risk for Tardive Dyskinesia.
We also heard from other people with delusions caused by Abilify, and fits of anger as well. Till now we hadn’t heard of anyone getting OCD-type symptoms (new fears and compulsive habits, etc.) This has been known to strike people who already have Tourette’s, it seems, but usually after a serious infection or similar “shock to the system.” Maybe this damn drug is delivering a shock to the system that has something in common with what bacteria do. We can learn a whole lot, if someone is just willing to listen …
The damned doctors, with their blithe denials of our side-effects. We’d be better off getting drugs from vending machines.
Thank you DG for writing this and publicizing it.
DG – Thank you for your honest and thorough report of your experience. How awful that you have had to go through all of this – all the name of getting help for Tourettes. I am just glad for you that your family was there to help you out and to agree that further “treatment” (i.e., more drugs) was not a good idea.
Here’s hoping that you can find some help in friendship, good food and exercise, and any other natural and healing sort of help you can get. After what you’ve been through, you deserve every bit of this sort of real help.
I always wondered if Abilify – because of its advertisement as having less side effects than the other (horrible) antipsychotics – really was. Now I know the truth.
hello, i am so sorry to read this. Much of your situation reflects what my 14 year old son is going through. We have seen four different neurologists and psychiatrists and no one can find a solution to his tics. The medication has made him drwosy….so he would sleep for two hours wherever he was in the morning. The dr insisted this would wear off as he became accostomed to the medication. It was awful as he would sleep in school, fall off his desk, and keep sleeping on the floor. Even as other kids and grades would walk in and out of the room. all the other tics became severe. His hand clapping so violent until the palms bleed and crack. His ankle banging until the bones are red and swollen and bleeding. The shouts went from an almost loud sneeze to horrible shocking noise that keeps him permanently horse. And the worse is the nasua and vomiting. Constant. maybe up to 18 times a day.
Finally the dr said to wean off abilify and try latuda. Things are worse. The new dr has suggested to get off latuda and then we may try a different class of drugs. He is no longer in school but at home with me. The days are long and boring and there is no social life. But, the tics are far less at home and the floor is softer to knee drop. This is sooo bad. We dont know if we should continue weaning off the meds or go back on latuda an raise them. The drs always say raise the drugs and youll get use to it. But, we just dont know…. He is taking ondasetron for the vomiting and it is helping somewhat. …. what to do?? what drugs do you take now? do you have a quality of life? does anyone, anywhere, have a good doctor? a good dietician? a Plan? anyone try deep brain stimulation? medical marajuana? help….
Leslie, I’m so sorry to hear about what your son is going through. Unfortunately, his experience doesn’t surprise me, though, because antipsychotics are such horrific drugs. So many of your son’s tics that you mentioned, including the knee drop, seem to be common side effects of these drugs. Antipsychotics can cause bizarre tics that are totally not normal for TS. Yes, so many doctors’ solution seems to be to keep raising the dose, but why would one want to keep taking more of something that’s clearly hurting them? They always say the side effects will level off, but there are so many times where that doesn’t happen. Considering how bad your son’s experience has been, I can’t imagine how going back on one of the antipsychotics could possibly be a solution. Be careful, because these drugs can cause serious withdrawals. If he’s off already, I believe it would be best to stay off, because if he goes back on, he may not be able to get back off again due to their addictive qualities. You should check out Tourette Syndrome Med Awareness, as they’re raising awareness about the dangers of antipsychotics for TS. They’re on Facebook, Twitter, and Google+, and they also have a web site. Also check out ACN Latitudes to learn more about many of the natural alternatives to meds that are out there for TS. I hope this helps!
1. absolutely NO antipsychotics
a person can sometimes supress and battle tics with pure will power. not always but sometimes and it is helpful. i.e. if you have a painful tic you can modify the tic by doing a movement similar to the tic but its not as painful as the original tic. that satisfies the urge to tic to some level and with time you build up your will power and ability to control the tics. antipsych meds take away all the willpower to battle and control tics and tics just come bursting out worse than before medication. AP-s take away ability to feel happy and good emotions, but they leave the bad stuff, and when you re feeling bad, tics get worse – like an enchanted circle.
2. get clonidine or some other beta blocker
these meds lower blood pressure and regulate adrenalin. tics often occur in a adrenaline bursting situations, this meds keep you calm in these situations, but not mind dulling, zombified sedation like antipsychotics. on clonidine your mind is clear so you can function normally in every day situations, and the body is more relaxed so all that nerve tension, irritability, increased sweating and the urge to tic are lowered. tics are still present sometimes, but that first impulse – the urge to tic is not so intense anymore.
3. adding benzodiazepines to the therapy
this is optional. if clonidine works good you better avoid them becouse they are addictive. if you think some more sedation is needed benzos can be used to achieve that becouse you cannot raise clonidine (in high doses it can drop blood pressure sevearly, in my opinion best dose is between 0.15 to 0.3 mg clonidine)
4. have a little cup of coffee and only one cigarette in the morning after breakfast
i know this seems crazy suggesting caffeine and nicotine to a 14-yr old but it has its purpose. coffee gives you better ability to focus and it is helpful to battle uncoherent swirling thoughts, mind racing that is often present in patients with tourettes, kinda like adhd. coffee is for balancing thinking and focusing processes.
nicotine in cigarettes affect dopamine receptors in the brain making them less sensitive to everyday stimulations that can come from allmost anything. noise, bright light, other people presence, crowdy situations etc. people with tourettes are often hypersensitive to those stimulations and then tics are more intense. nicotine reduces sensitivity on dopamine receptors making those everyday situations a lot easier to handle.
keep this at a rate of only one cup of coffee and only one cigarette a day, if you do it more, treatment effectivness is lower and side effects are higher.
5. avoid alcohol at all times
alcohol lowers inhibition levels and inhibition is important in controlling tics. no inhibition = more tics.
6. get lots of exercise and spending time in nature, outdoor activities, fresh air in the mountains and getting enough sleep, as much as your body needs. 10 hrs are the best for me 🙂
hope this helps and may peace and happiness be with you. maybe it seems like BS if you re suffering, but believe, be strong and fight.
I’m not satisfied with what Ability is doing for my son can (22). He’s been in it for several months… and at first it seemed help with his TS and some symptoms if ASD. One thing that doesn’t help is the unreliability of the psychiatrist who is treating him, as regards being able to get advice (ad hoc) on what to do next. Hence, I’m looking to titrate dosage down with a view to stopping. Meanwhile, I’m trying medical cannabis oil with very low THC (almost non-existent 2%,1%, .01%) and mid-teen levels (10%, 12%, 15%) of Cannabidiol (CBD) which has no psycho-active effects (no high), so I’m not getting my son stoned. CBD is gaining strength/recognition — even though just anecdotally — that it helps with seizure do, epilepsy… which is somewhat similar to some TS symptoms. If you like, we can stay in touch and I can let you know things progress.
I’ve had Tourette’s (severe motor, mild vocal) all my life (I’m >40 now). The only things I’ve found that help (I’ve also tried Abilify; btw, although for me I didn’t have any negative effects, it just didn’t help) are:
– Meditation and actively trying to remove even mild stressors from my life (especially environmental — e.g. making sure my home is pleasant, etc.)
– There is a strange technique that I made up, although it seems to work consistently, where when the tics get really bad when I’m trying to do something, I say to myself “I wonder what this would be like if I didn’t have Tourette’s, let’s pretend…”, and somehow, that can bring tics to a full stop. However, it only works for a minute or two at a time, as soon as I stop focusing on that goal, the tics resume. Still, it’s something.
Thanks for this – I’m sure you are right that this technique can work for at leaat some people
I was on Abilify for my Torettes. It was no where near as scary as it must have been for you. Now I’m medicine free!!! ?
It could also be that ocd spiked because tics did. Tourette’s can change. I do think you had an awful neurologist because antipsychotics are very serious meds. You deserved better. I wish you healing and thank you so much for sharing this.