Experience with Abilify

Posted by Guener @guener, Jul 6, 2016

I’m having a good outcome so far on 2mg of Abilify supplemental to 20mg of Lexapro within the first week. Side effects for me include some nausea, dizziness upon standing, and insomnia, all diminishing. I’m just wondering how others are doing, what dosage you’re on if willing to share, etc.

I was diagnosed with tardive dyskinesia more then 16 years ago when I was taking trilafon and then Zyprexa. Needless to say it was disturbing. The neurologist said there was nothing that could be done, and it would continue to get worse. I had uncontrollable head movements, and tongue movements.
Fortunately with changes in my meds, those major symptoms went away. Other symptoms continued. Then after researching the internet and noticing I had a sensitivity to light. Especially flouresent light, I decided to start using sunglasses which have really helped. I use them even when using the computer and watching tv. I also take 2 mg melatonin and 2000 units D3 at night. I take these supplements after much trial and error. So I hope this can be of help. I also take 15 mg abilify per day. If not I’m afraid I will have a relapse, and then more drugs and a return of these distressing symptoms.

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@berit

Glad it’s working for you. Watch out for involuntary leg, arm and even head jerks and report them to your doc ASAP. They can continue years after you discontinue the medication and even become permanent. And yes, this is the voice of experience talking.

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HI @berit,
Thanks for your post. My sister has been experiencing a lot of hand tremors since starting Abilify. She is reluctant to chalk it up to the Abilify (I just mentioned your post to her). She’s more prone to blame it on stress and smoking, but she had stress and was smoking pre-Abilify. Any comments? Thanks so much.

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@nickjr

I was diagnosed with tardive dyskinesia more then 16 years ago when I was taking trilafon and then Zyprexa. Needless to say it was disturbing. The neurologist said there was nothing that could be done, and it would continue to get worse. I had uncontrollable head movements, and tongue movements.
Fortunately with changes in my meds, those major symptoms went away. Other symptoms continued. Then after researching the internet and noticing I had a sensitivity to light. Especially flouresent light, I decided to start using sunglasses which have really helped. I use them even when using the computer and watching tv. I also take 2 mg melatonin and 2000 units D3 at night. I take these supplements after much trial and error. So I hope this can be of help. I also take 15 mg abilify per day. If not I’m afraid I will have a relapse, and then more drugs and a return of these distressing symptoms.

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Hi @nickjr,
Glad to hear the major symptoms are at bay. Congrats on your perseverance to find things that helped. Thanks for sharing your wisdom, especially 3 months after my post…you guys are all very generous and thoughtful.

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@berit

Glad it’s working for you. Watch out for involuntary leg, arm and even head jerks and report them to your doc ASAP. They can continue years after you discontinue the medication and even become permanent. And yes, this is the voice of experience talking.

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It could be a side effect of the abilify and not permanent damage like I have. Maybe ask the doctor to cut back the dose, maybe that would help. I would only take these medicines if they are absolutely needed. I also would not take them for years unless you really have to . Has she seen a neurologist? Also maybe a different med would agree with her more. Another idea with the doctors permission stop taking the abilify for about a week and see if the tremors go away. In addition drinking alcohol with these drugs can really mess a person up.

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Thanks again @nickjr for sharing your wisdom. My sister is so darn stubborn…when I suggest these things to her, she just brushes me off. I think I’ll send our posts to her daughter- she seems to be the only one that can get through to her mom.
You are absolutely right…no one should take anti-psychotics unless it’s absolutely necessary. I just spent the past year coming off Seroquel, opiates and ativan. I feel so much clearer and much more energy. It all happened at the suggestion of my lawyer after an MVA…not from my GP or psychiatrist. Isn’t life strange? And yet, my sis (who has witnessed my relatively easy withdrawal from all) doesn’t heed my warnings. Guess I’m a prophet in my own town…families (sheesh:)
Oh, and last thought, my sister doesn’t drink at all, so I’m thankful for that blessing.

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@sallycanuck

Thanks again @nickjr for sharing your wisdom. My sister is so darn stubborn…when I suggest these things to her, she just brushes me off. I think I’ll send our posts to her daughter- she seems to be the only one that can get through to her mom.
You are absolutely right…no one should take anti-psychotics unless it’s absolutely necessary. I just spent the past year coming off Seroquel, opiates and ativan. I feel so much clearer and much more energy. It all happened at the suggestion of my lawyer after an MVA…not from my GP or psychiatrist. Isn’t life strange? And yet, my sis (who has witnessed my relatively easy withdrawal from all) doesn’t heed my warnings. Guess I’m a prophet in my own town…families (sheesh:)
Oh, and last thought, my sister doesn’t drink at all, so I’m thankful for that blessing.

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I know your very concerned about your sister. My condition got so bad overnight that I felt like my life was lost. I felt determined to regain the life I had . I was about 45and never anticipated it. I know there were worse things but I sure wanted this one to get better!
I’m no doctor but I think the tremors may be a start of something and to get it checked by a neurologist right away, If they change the medicine or even reduce it or eliminate it completely maybe catching it early would help. Congratulations on getting off everything, I just think some times maybe I didn’t have to take the trilafon for so many years. I know I am better so I have that to be thankful for and I’m still taking the abilify, I don’t want a relapse. I have a friend who was beginning to have hand tremors and they reduced his meds and it got better.

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@berit

Glad it’s working for you. Watch out for involuntary leg, arm and even head jerks and report them to your doc ASAP. They can continue years after you discontinue the medication and even become permanent. And yes, this is the voice of experience talking.

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If it is caused by Ability (and who knows? I’m not a doc – I can only tell you what happened to me). If it is caused by Ability it will get worse, which is a clue is is caused by Ability and not something else. Also, what I experienced was not so much tremors as it was sudden, involuntary leg and arm jerks. They came on suddenly, when I was sitting minding my own business. One sudden jerk, then they went away until the next time, which was sometimes the next day. or the next hour.

But this is the scary part. I mentioned it to my psychiatrist who said I wasn’t taking anything that would cause involuntary twitches and jerking. i went to a neurologist who also drew a blank. Meanwhile, the twitches and jerks became more frequent and more of my body parts became involved, like my head.

Then one day, almost a year later, I am watching TV and on comes an ad for Abilify. And in that VERY long list of possible side effects is INVOLUNTARY TWITCHES AND JERKS that can become PERMANENT. I met w/ my psychiatrist and told her I was VERY annoyed that she didn’t know about this wanted off ASAP. It took several YEARS for the twitches and jerks to end completely. It is sad, but true, that we need to stay on top of own medical care b/c no one cares as much or devotes as much time to our care as we will. And yes, I have worked in health care and this is, again, the voice of experience ce speaking. It is also true that you can lead the horse to water, but you can’t make him drink. Don’t attempt the impossible – I hate to say it but people have the right to make what we believe is the stupid/wrong choice (and yes, again, the voice of experience – I have been so upset about this sometimes I have wanted to scream – but adults get to decide what they think is best for them, whatever our opinion might be) however hard it might be to watch them doing it.

Best of luck to you and your sister.

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@nickjr

I was diagnosed with tardive dyskinesia more then 16 years ago when I was taking trilafon and then Zyprexa. Needless to say it was disturbing. The neurologist said there was nothing that could be done, and it would continue to get worse. I had uncontrollable head movements, and tongue movements.
Fortunately with changes in my meds, those major symptoms went away. Other symptoms continued. Then after researching the internet and noticing I had a sensitivity to light. Especially flouresent light, I decided to start using sunglasses which have really helped. I use them even when using the computer and watching tv. I also take 2 mg melatonin and 2000 units D3 at night. I take these supplements after much trial and error. So I hope this can be of help. I also take 15 mg abilify per day. If not I’m afraid I will have a relapse, and then more drugs and a return of these distressing symptoms.

Jump to this post

Welcome back @nickjr. Thanks for contributing to this discussion!

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@berit

Glad it’s working for you. Watch out for involuntary leg, arm and even head jerks and report them to your doc ASAP. They can continue years after you discontinue the medication and even become permanent. And yes, this is the voice of experience talking.

Jump to this post

Amen to everything you just wrote. And thanks so much for your thoughts and good wishes. I am happy for you that eventually you solved the riddle yourself- which is incredibly tough to do if you’re depressed and are taking meds that fog your brain. Good for you!!

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@sallycanuck

Thanks again @nickjr for sharing your wisdom. My sister is so darn stubborn…when I suggest these things to her, she just brushes me off. I think I’ll send our posts to her daughter- she seems to be the only one that can get through to her mom.
You are absolutely right…no one should take anti-psychotics unless it’s absolutely necessary. I just spent the past year coming off Seroquel, opiates and ativan. I feel so much clearer and much more energy. It all happened at the suggestion of my lawyer after an MVA…not from my GP or psychiatrist. Isn’t life strange? And yet, my sis (who has witnessed my relatively easy withdrawal from all) doesn’t heed my warnings. Guess I’m a prophet in my own town…families (sheesh:)
Oh, and last thought, my sister doesn’t drink at all, so I’m thankful for that blessing.

Jump to this post

Hi @nickjr,
I had a weepy moment when I read the opening line to this post. Guess I haven’t been fully conscious of how much I worry about her, even though I think I’m setting healthy boundaries.
Hope I didn’t come across as bragging about coming off meds; Lord knows that I have had to take various drug cocktails over the past twenty years to keep me alive and kicking. I understand the fear that comes with even thinking about changing meds that seem to be working. In BC Canada, where we live, the BC Medical Association introduced new rules regarding the prescribing of opiates and benzo’s. A doctor can actually lose his or her licence to practice if the guidelines aren’t followed. I know my doctor has many patients who are struggling with the new guidelines and feel forced to wean off meds that they just don’t feel psychologically prepared for.
I appreciate all the comments from everyone and send love from the Wet Coast 🙂

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@berit

Glad it’s working for you. Watch out for involuntary leg, arm and even head jerks and report them to your doc ASAP. They can continue years after you discontinue the medication and even become permanent. And yes, this is the voice of experience talking.

Jump to this post

I had a drinking/drug problem, which I believed triggered a temporary psychosis. I quite drinking/drugging 30 years ago. I dramatically improved. I decided to take the medications. Trilfon/Zyprexa after about 15 years I developed the tardive dyskinesia. I know what your saying, if I continue to take the abilify my symptoms will get worse. One problem is if I discontinue the lower dose of abilify and have a relapse, put into treatment, get loaded down with meds, my TD symptoms get a lot worse. So I have decided to stay with the lower dose of abilify which is not supposed to have the side effects of the older meds. I had one relapse, and my symptoms got much worse, when I was put on Geodon. I’d like to get off of all meds but a relapse is to much of a possibility. Maybe I should look into natural alternatives more. I will keep what you said in mind. Maybe at some point I can get off of the abilify.

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What you said is why socialized medicine scares me. I believe we have the right to refuse to take the medicine. We also have the brains to research and know what is good or bad for us. I know it can be a struggle to go against doctors orders you just have to look around to find a doctor that will, I don’t know sounds like they are under pressure from bureaucrats. We seem to be headed in the same direction here in the US. I’ve lived in Canada and know what your saying. I’ve worked out agreements with the doctors in the US and they seem to be pretty reasonable.

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@nickjr

What you said is why socialized medicine scares me. I believe we have the right to refuse to take the medicine. We also have the brains to research and know what is good or bad for us. I know it can be a struggle to go against doctors orders you just have to look around to find a doctor that will, I don’t know sounds like they are under pressure from bureaucrats. We seem to be headed in the same direction here in the US. I’ve lived in Canada and know what your saying. I’ve worked out agreements with the doctors in the US and they seem to be pretty reasonable.

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Even with its negatives, I’m still a big fan of socialized medicine. I can access any treatment I need, at a cost of only $30/mo and our drug costs are so low. The “rule” changes I mentioned are to combat the ever-growing problem of opiate and benzo addictions, and would have happened, I think, even in a private health care setting. But, this isn’t important…what is important is that you are doing okay and it sounds like this has been a very long, hard fought battle for you. I send my best wishes for health and happiness and continued healing.

Liked by angus4819

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Well, that is good to know, I’ll think about it.

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