Edted Son tapering Abilify

[Altostrata]

I believe MindFreedom is compiling a collection of these cases. Or is it the Icarus Project?

[Edted]

Thanks Alto:

I took a perfunctory look at both sites and did not find it, but will take more time looking as soon as I can.

Gratefully,

Ed

[Jemima]

If it's any consolation, I think many people - myself included - could have been diagnosed as psychotic during the early stages of antidepressant withdrawal. In fact, many people are diagnosed as bipolar after they've been on an antidepressant long enough to get overstimulated by the drug. It's a psychiatric cliché to claim that this hyperactivity and irritability is due to an underlying psychosis being "unmasked" by antidepressant treatment. What rot! I avoided doctors until the worst of my withdrawal was over, at least to the point that I could act normal even if I didn't feel that way.

 

For some reason, antidepressants and other psychiatric drugs seem to trigger violence in younger people, although they sometimes have that effect on adults as well. Aside from that, your son's youth is likely in his favor as I've read that young adults recover from psychiatric medication damage more quickly and easily than the rest of us.

[Edted]

Thanks Jemima. I know that shrinks take great liberties in assigning diagnoses that are often little more than payment codes. My son would certainly not disagree with the label of psychosis when in withdrawal. He would (and so would I) find it impossible to find anything in his history to suggest an "underlying illness" that was "unmasked" by treatment. We have looked and looked (so has his psychologist) for anything that could have underlaid his break from reality in w/d. Other than the meds, we can't find it. Was his upbringing perfect, far from it. Have we discussed the many ways that his mother and I failed him ( and still do); extensively and honestly, I think. I will try to go further with this in my reply to GiaK.

Thank you,

Ed

[GiaK]

my psychosis was drug induced too...still I now have a psychotic capacity and that is what I'm talking about...once it's open it's there...it's actually a lovely thing albeit it's introduction was traumatic as it is for most people...an openness to the nature of consciousness...picking apart how one got there isn't really gonna get much done...it's about how to go forward and heal that matters...

 

I don't expect many to understand what I'm talking about this is either something people get or they don't...but I'm hardly alone in this understanding...among those of us who've experienced psychosis for any length of time and come to also understand it as a process...the altering of consciousness with hallucinogens is also very much the same...many of those folks understand this stuff intuitively as well...anyway...I imagine I'm going outside the bounds of this forum now.

 

I won't continue if it's not making any sense...that's not helpful... If I can be of further help let me know.

[Edted]

Dear GiaK:

If at anytime I come across as argumentative, please know that I hold your opinions and those of others on this site in very high regard. They are opinions formed, not only of personal experience, but also from contact with a very large number of people who are struggling or who have struggled to recover. I can accept that anyone can become psychotic given the right circumstances, or drugs, or a combination of both. What, I guess, I am trying to tease out of the posts is information relating to people where the major contributor to a psychotic break was medication. Neither I nor my son can find anything to explain the profound effect on him of withdrawal. I am not sure I understand the maturing process you describe in light of the absence of difficulty in maintaining "awareness" of what was going on in his mind prior to meds (and when he is on meds). I believe that if he could return to pre-med status, he would need to deal with the depression that led him to psychiatry, and with the trauma from his multiple psychoses in w/d, but the fear that he will have a tendency to psychosis by virtue of the drug exposure is really the crux of the question. I don't think he would have had any greater risk of psychosis than the average if not for the drug. I hope I haven't been too disorganized in this post. I'm trying to convey that his pre-med status was ordinary. His status when in w/d is straight out of a horror movie.

Appreciatively,

Ed

[Edted]

Dear GiaK:

I had not seen your most recent reply when I last posted. It saddens me very greatly to think that you and my son would have to face a greater proclivity to psychosis than you would have. My son and I hung a great deal of hope on the idea that if he tapered slowly enough, he would not be risking another psychotic break and the consequent risk of violence. I am really struggling to find a way forward, if that is the case.

Ed

[GiaK]

right, I understand.

 

the fact is you can't go back...I guess that's the real issue.

I don't think that has anything to do with the future however. Part of healing is acceptance of what has happened. What IS. This is.

 

Have you heard of the concept of these drugs being agents of trauma? Trauma, in more enlightened circles, is understood to be at the root of most of what gets labeled mental illness. Again this supports what I was saying...whether it's the drugs or some ugly traumatic event...here we are in a similar circumstance.

 

See: Psychiatric Drugs as Agents of Trauma — “Drug Stress Trauma Syndrome” http://beyondmeds.com/2012/04/25/psychdrugsagentoftrauma/

 

and don't worry...you're trying to figure stuff out and I remain very tired. I'm going to bed now...I will hopefully be fresher tomorrow.

[Meimeiquest]

I think I'm someone who "doesn't get" psychosis, I just haven't been exposed to it. But I did have burning rage towards my husband near the end of going off Zyprexa. It was totally inappropriate, but I think it was an amplification of real anger that I had towards him, and I had no restraint. I am so blessed that while I was bubbled in Zyprexa for six years, he really changed a lot for the better. Plus some hypomania when the Wellbutrin was newly unopposed helped . All that to say it was relationally very tough to taper, but it has been so worth it in our marriage. And it is totally unrelated to anyone else's experience.

[GiaK]

oh...just so you know...I don't believe I have any proclivity towards psychosis at all anymore because I totally integrated and embraced the hugeness of consciousness presented to me...and this is how I know we can heal. I am healed.

 

not physically, but mentally...yes, completely. And I don't believe I've ever said that. But it is from this experience that I have great hope for everyone who has ever experienced what is labeled psychotic...

 

granted everyone is different and the most tragic thing is that supports are so few and sparce...still that is changing and with the internet it's possible to find almost anything.

 

I do hope your son is working as hard as you are because it's really up to him to figure it out...to find that which helps him through the chaos...though certainly at certain junctures we all need help

[GiaK]

there is a paradox here...when one has experienced madness...simultaneously more sensitive but once healed...well a deeper resilience comes...

 

stronger at the broken places kind of thing...

[GiaK]

so now the task is going slowly enough so that nothing horrible happens...one can process it all very slowly...when it feels safe enough. And try to be patient until that time comes.

 

I'm really really sorry for how painful this is for you.

[Edted]

Dear Meimeiquest :

A smiley face right back atcha. I won't try to explain psychosis because I haven't experienced it and, even if I had, it probably wouldn't be explicable to someone who hadn't . I have had rage though and it is terrible to remember that out of control feeling. I can only imagine that psychosis must feel much worse. I'm glad your husband has become a better man. One of the most uplifting comments I ever heard about was from an 80 year old who was asked how he was doing. He replied that he was encouraged by how much he had grown in the last 10 years. Keep on growing,

Ed

[Edted]

Dear GiaK:

Again, you have given me things to think about that will take time to chew through. My son works harder on the problem than I do. Right now all his energy is devoted to getting stable. He struggles so hard to translate volition into action. He trys to read, but his concentration is still in pretty bad shape. He is working his way through RD Laing, but it is painfully slow. He works from home and is paid for completed projects. The completed hours pay rate is good, but it takes him far longer to complete projects than it would have prior to the last unsuccessful w/d and subsequent through the roof med changes (while in the hospital). Being financially independent is a major goal for him. Every day we discuss the exchanges on this site. I look forward to the time when he will be the one posting. I will never have his understanding of what has happened to him or what he needs to recover. I hope that you do not respond anymore tonight because you are sleeping soundly.

Thank you,

Ed

[Barbarannamated]

My son and I are going to see the "best in his field" neurosurgeon tomorrow. Like you, my son ordered copies of his medical records and found that 8 years ago (when hospitalized for a suicide attempt), they had done a CT scan that showed a 1.4 CM cyst in his brain. The radiologist had written a note that an MRI should be done. The following note by a neurologist said "CT scan normal". When my son read this, he asked both his psychiatrist and his GP to order an MRI. They both said no based on the neurologist's comment.

 

We got one done anyway (paid cash) and it showed a 3.5 CM cyst. Back to the shrink and the GP to ask "what now?" and they both said "nothing because you are asymptomatic". Once you have a psych label, the ability to get a proper assessment of other health issues is out the window. All symptoms are ascribed to your psych diagnosis or it's treatment. My son does not expect that the cyst will be found relevant to his symptoms, but he wants a doctor to do more than presume an alternate cause.

 

Ed,

I've been following your story and my heart aches for you.

 

The information and response by psychiatry about the cyst is infuriating. Am I understanding correctly that it grew from 1.5cm (per CT) to 3.5cm (MRI)? I hope that you get a full and unbiased evaluation by the neurosurgeon.

 

I was never diagnosed as psychotic but there have been some moments since withdrawal that have been a slippery slope. Though I didn't have classic features, the perceptual distortions have been alarming at times. I've also experienced rage that I never had before or during use of many different drugs for "treatment resistant depression" including brief stints with Risperdal, Seroquel, Zyprexa, and approximately 6 months on Abilify. I did cold switches with the first 3 (while on various SS/NRIs) and a few week taper of Abilify. I'm probably not a good comparison because I was still on other drugs, but thought I'd share.

 

Regarding the success stories... I think most people may be hesitant to declare themselves a success or fully healed because of the up and down / windows and waves pattern of withdrawal... not wanting to jinx a good window. Also, having been labeled in the past and realizing how easily rediagnosis can happen, I hesitate to use labels on myself but try to identify and describe the feelings and perceptions. I mistakenly used the term "febrile hallucinations" during a perceptual episode and almost landed back in psychiatry. My endocrinologist ordered an MRI which did show lesions.

 

You have the best guidance with Gia, Alto and the others. I'm in the presence of MDs regularly and they don't have a fraction of the knowledge and insight found on this forum.

 

B

[Jemima]

WHOA! Working one's way through R.D. Laing is likely painfully slow for just about anyone. That's very complex stuff. Have you read any of his books yourself?

 

Speaking of books, there is increasing evidence that the human brain is capable of a great deal of change throughout a lifetime, so there is plenty of hope that your son can overcome what's happened to him, although probably not as quickly as you all would like. Here's one from my Wish List:

 

The Brain That Changes Itself

[Altostrata]

An excellent book suggestion, thanks, Jemima.

[Edted]

Thank you all for your posts. Hopefully, I will be able to respond to them individually when I have more time and am a bit less tired. My son and I made the trip to the neurosurgeon this morning and, according to my son. ( he decided not to have me in with him when he saw the doctor) he was a very impressive doctor. He actually spent the time to go through what he thought about the cyst and why. He answered all my son's questions thoroughly. The upshot is that the cyst is unrelated to any of my son's symptoms in w/d. Although the doc would prefer not to operate on the cyst because it 's location is problematic, he is concerned that if the original ct scan accurately indicated it's size in 2005, then it has grown very quickly. That Is unusual in an adult. He asked my son to get a copy of the actual scan rather than just the radiologist's report on the scan. the doc will see if it was appropriately read or if it even has enough information for a size estimate to have been made. After that he will determine how often new MRI's will be needed to monitor the cyst. My son and I were surprised to find there are still real doctors out there (at least one anyway).

With 5 hours in the car, my son and I had a chance to talk about GiaK's insights on psychosis and recovery. I was surprised at how much he agreed that just being off the meds does not equate to recovery. I won't try to convey all his thoughts on the matter, in part because I am still thinking my way through what he said, but reintegration of thoughts and feelings to (as GiaK put it) "be stronger in the broken places" was very much part of his plan. I am so grateful for the people on this site.

All the best,

Ed

[Aria]

I've been pondering your thread and it's wonderful how you're helping your son. You are right to say with a mental illness diagnosis he does need your help to maneuver the system to receive treatment for his brain cyst. I didn't have my family on board when I was so messed up on the psyche drugs and certainly did NOT when I tapered.

 

Was I psychotic when on the poly drugs?? My friends said I acted weird but never psychotic and others asked what I was on because it was obvious to the untrained eye it was due to drugs of some kind. How my psychiatrist came up saying I was I fully don't know (the drugs made me "drunk"). Did I experience psychotic feelings when tapering?? No, I felt mostly panic and the revved up Askathsia from the intense withdrawal aspects. Knowing what symptoms tapering might cause is what saved me and made me so determined to finish my taper no matter what.

 

I do think these type drugs can cause psychosis and definitely when tapering. There were a few times I screamed from the skin ripping Askathsia when tapering. It had to be the worst...the utterly horrible sped up feelings.

[Edted]

An update on my sin's planned taper. I will call him Cal ( not his name, but short, easy name to type). He's been on the liquid Abilify for a month now and is a bit depressed and sleepy (he quit caffeine a week ago and, we guess that's why). His planned taper (not cast in stone, he'll be tracking symptoms and adjusting as necessary) is as follows:

Decrease monthly by .2 Mgs per month until he is at 4.2 Mgs then hold for two weeks. Resume taper at .1Mgs per month until he is at 2.5 Mgs and hold another two weeks. Resume taper at .05 Mgs per month until he is at .6 Mgs. At that point, he will have been withdrawing for five years and who knows what additional information will be available. I would appreciate any input on the plan. He only takes fish oil as a supplement. To some, this might seem a very long process, but if I've understood the message of this site, you can't go too slowly. Hopefully at the slow pace, he won't need to put his life on hold much longer.

Thanks,

Ed

[Altostrata]

Sounds like a plan, Ed.

 

You can't go too slowly, but you can speed up if all seems stable at that very conservative rate, e.g. reduce every 3 weeks instead of every 4 weeks, etc.

 

I imagine, given your son's sensitivity, you both will want to have a good long track record of conservative tapering before you try anything fancy.

[Edted]

Thanks Alto. I will try to post as things progress.

Be well,

Ed

[Edted]

Well my son began his taper a week ago Sunday (May 12). He reduced his Abilify (5mgs taken first thing each morning) to 4.8mgs). He had what may have been a cold, allergy or w/d symptom within 24 hours. It resolved by Thursday. He didn't notice much else except occasional irritability until last Friday when he felt a bit of a lift which only lasted about 20 minutes. Friday, and over the weekend, he felt less tired, more optimistic an more energized. Saturday he quit smoking and by Monday decided that wasn't a great idea. He was feeling very irritable and had a few glasses of wine. He smoked again and felt better. He does not think he will try to stop smoking right now, but will try to limit the number of cigs to half a pack/per day rather than the 1 1/2 packs he had been smoking. He tapered off caffeine the week before beginning the drug taper and it may have been too many changes in too short a time frame. He has been cleaning up his diet for months now and eats pretty healthy (no processed sugar, minimal carbs, more vegetables than meats). When his energy level recovers a little more, he will introduce a bit of exercise. Pre drug he was always actively involved with exercise, yoga, meditation, and Alexander technique. Oh one very dramatic change that occurred yesterday, his vision improved. I don't know if people on drugs other than antipsychotics have the visual side effects that people on antipsychotics do, but the AP's can make the eyes unsteady. Visual recognition is impaired and reading becomes difficult. This cleared up dramatically yesterday and remained improved today. His tinnitus is unchanged (relatively low volume since his last major w/d episode). He won't make another drug reduction until June 9th...4 weeks between reductions. I'll try to keep the progess report current. All input always appreciated.

Regards,

Ed

[Altostrata]

Sounds encouraging, Ed. Since he's had some improvements, perhaps he'll be more confident about this technique.

[Edted]

Alto: thank you. It is going fairly smoothly so far. He slept most of the day today, but he has more than two weeks before the next taper so, hopefully that will allow his system to adjust. He didn't hit the carbs today, so that might be settling down too. One of the benefits we hope to see in the slow taper is that when he gets pushed off his routine a bit, he'll get back on it before things deteriorate (diet, sleep, drinking, or the urge to make lots of changes all at once.

Regards,

Ed

[tezza]

My fingers are crossed that this all goes well!

[Edted]

Thanks Tezza. The last couple of days have only been so-so for him. He has carb cravings and his visual problems are come and go. He is anxious to regain his ability to translate impulse to accomplish things into action. That has been an ongoing battle for him in every withdrawal. I don't know that that symptom has a name, but it certainly gives rise to a lot of frustration and self-criticism. He was pretty irritable last night (less so today), but strangely irritability has often preceded a lift in mood.

Be well,

Ed

[Edted]

Once again irritability preceded a lift. He was more optimistic on the 26th and the following days. He had less malaise and knocked out a good bit of the work that he needed to complete by Monday (work from home job). Tuesday the tiredness returned and is still present, but generally feeling OK ( not as good as the previous few days, but OK). None of what I'm mentioning may seem important, but I figure that it serves not only as a journal for him to look back at later on, but that maybe someone else on a similar journey off drugs will find the "bread crumbs" useful. He is anticipating further improvements after his next taper on June 9th. I am always impressed by the patience of people who successfully kick these meds to the curb....removing the band-aids slowly when the urge to just rip them off is so strong. I truly admire my son and so many of his "fellow travelers" on this site.

Ed

[Altostrata]

Ed, this is great news. This topic will help you, too -- since it's been so hard for your son to taper before.

[Rhiannon]

I too am very pleased to hear about how things are going for you and your son. I try not to get too attached to peoples' outcomes, because so often people just refuse to go slowly enough or otherwise to follow the advice they get here, but I'm letting myself feel optimistic about your son's situation. Yay, hang in there, yes!

[Edted]

Alto and Rhi:

Thanks for the encouragement. Cal is still very tired today. He missed a deadline, but seems to be learning some acceptance. I'm sure you all know the serenity prayer, but we kind of simplify it to, "give it your best shot under the circumstances, and then whatever happens is pretty much out of your control". That phrase has the same problem that the serenity prayer does... It's tough enough to distinguish between what is "your best shot" and a failure of will when you aren't on drugs or in withdrawal. Drugs /withdrawal seem to turn up the level of self-criticism. I wish he could accept how brave and admirable he, and all the others fighting to get off these de-humanizing drugs are. My old man was a highly decorated war hero. He used to dismiss people's praise with this comment. "The real heroes aren't the ones who did a brave thing on one occasion. They are the ones who returned to the battlefield day after day after day. All the best to all of you heroes out there.

Ed

[Edted]

Well today was the second reduction in Abilify (from 4.8 to 4.6 Mgs). He is certainly better today than a month ago. The myoclonic jerks (chicken wing) seem to have gone away. He still gets very tired sometimes, regardless of how much sleep he has had. He has periods of optimism, but they don't last long (maybe a half hour). He had some paranoid thinking last weekend. A white van was behind him for a long time, and for about 10 minutes, he thought they might be following him. He's had a few blips of paranoia since his last re-instatement, but this was longer than a blip. The paranoia has not reocurred. His vision is still inconsistent. He can focus his eyes, but it isn't always automatic. The ability to translate volition into activity is still very unpredictable. So, I guess the short version is; things generally (if not consistently) are better, and no major problems.

Ed

[Meimeiquest]

I'm going to call that a good report and continue to wish you the best

[Edted]

Thanks Meimeiquest. I hope you are doing well.

Ed

[Adagiooo]

Hi Edted,

 

I wish you and your son continued strength and perseverance as he makes his way off of the Abilify. Take care.

 

Adagiooo

[Edted]

Thanks Adagiooo. We wish you the same.

Ed