Edted Son tapering Abilify

[Edted]

Alto:

I appreciate your responses. No disagreement in the first two paragraphs of your last response. In paragraph three you said, "You must work together to monitor". That was certainly the plan last time. All four of us (my son, his psychiatrist, his psychologist and me) agreed on that, but in w/d my son became suspicious of all of us. He didn't say so because he didn't trust us. We saw some warnings, hyper vigilance and heightened startle response, but didn't see how much else was going on (superstitious thinkiing and magical beliefs. How would we better handle this? You asked about timing of the symptoms. To answer this without confusing the discussion, I should clarify his last tapering. He started out at 15 Mgs (following the previous taper....that's two w/d's ago), although he has traditionally been stable at 5 Mgs. He moved rapidly to his 5 mg dose without incident (about 4 months) From 5 Mgs he decreased by .2 Mgs ever 2 weeks until he reached 4 Mgs. After that he reduced by .1 Mgs every two weeks (with an occasional hold of 5 days to a week if he had symptoms). He was at .8 Mgs when things hit the fan. To answer your question: each withdrawal usually showed some symptoms (generally sleep loss. Myoclonic jerks, akathesia, or mood instability). Symptoms ostensibly resolved the following week. By resolved, I don't necessarily mean completely, but mostly. He indicates that the delusions which he wasn't telling us about kicked in around 1.5 Mgs. How do I know this ( hiding the delusions) won't happen again?

Thank you,

Ed

[Altostrata]

That's a tough one, Ed. Your son is the only reliable source for his symptom reports.

 

I guess you'll need to resolve the trust issues. Perhaps talk to the psychologist about opening up communication between your son and yourself?

[Edted]

Alto:

Yes it is a problem in withdrawal. The psychologist can't do anything with it because trust isn't a problem until my son starts having delusional thoughts. Otherwise my son does trust me. When the distrust starts, he doesn't trust anyone.

Thanks,

Ed

[Altostrata]

Hmmmm. I guess you'll have to talk this out with him.

 

Perhaps you can make a tapering schedule, on paper, so he feels he knows what to expect and what kinds of decisions the two of you will be making.

[dalsaan]

Hi Ed

 

I really feel for you and your son. I think micro cuts with long holds is the only answer you are going to get. I would be working out how you are going to know its time to make the next cut.

 

Did he ever have periods of no symptoms or very minimal ones. If so, can you agree that that's what it has to look like for a week or two before you make the next cut?

 

Helping him to remain patient, even if it's going well is extremely important.

 

I'll be thinking of you

 

Dalsaan

[tezza]

Ed,

 

This is a very difficult situation, one I witnessed with my mother many times but I don't think she ever tried tapering. I'm pretty sure she CTd every time.

 

She trusted no one and wouldn't say what she was thinking most of the time. She had a very wild look in her eyes. It was horrible! I just wanted to let you know I feel for you and I pray there's an answer somewhere. I know it feels like you're going around in circles.

 

I understand what you're saying and wish I knew the solution.

 

Hugs to you and your son,

Tezza

 

P.s. maybe VERY long holds.

[Edted]

GiaK:

Sorry I missed you reply before. Thank you. I'm sure it is difficult for people to even mention, let alone discuss violence in a public forum and it is good to hear that it might not be as rare as one might think. (I don't mean it's good, I mean that there is comfort in knowing that my son is not alone in this). His violence in the last w/d was not from rage. It was from the delusion that I wasn't me, but rather that a demon had taken over my body. The hallucination that there was fire coming out of my eyes. Please, please remember that prior to the antipsychotics all he had was a depression his freshman year at college. When SSRI's didn't do anything, and he was increasingly depressed, he was placed on Wellbutrin for a week and then c/t'ed. A week later he attempted suicide and they started him on the ap's. It was only when he tried to take himself off ap's that he became psychotic. He had no prior history of delusions or hallucinations, let alone psychosis. He and I both think that the answer probably is in micro tapering, but what if that fails and someone is seriously injured? There has to be a way past that issue.

Ed

[Edted]

Dalsaan:

Thanks. Yes, micro cuts and long holds seem promising. He has many times reduced without problems. Problems do seem linked to the speed of reduction. Until this last unsuccessful w/d, I was confident I could tell when things were not going well and there would be a chance to reinstate. There were physical signs (weakness, malaise, unsteady gait, tinnitus, blurry vision, and myoclonic jerks), but he hid the psychological problems. Any future attempt at w/d would need to be less tolerant of physical signs, not just psychological ones. My son has a great deal of patience. He has been in this hell for nine years now. He would take whatever time it takes, but needs to know that he won't harm anyone during withdrawal.

Tezza:

I am so sorry about what you and your Mom went through. It is heartbreaking to see a loved one that way. Both you and your Mom have memories that no one should have to have. There are so many brave people on this site. Was the problem ever resolved for your Mom?

Ed

[GiaK]

Yes, Ed,

even people with benzo withdrawal report having delusional thoughts and murderous thoughts about people they live with etc...again, not talked about openly...because it's too terrifying for too many people. People get through it pretty much without responding to impulses, but of course it's something that needs to be taken very seriously.

 

I've worked with people coming off every class of drug as well as people with histories of psychosis...and people get through this stuff if it can be done with appropriate supports and lots of time and patience. Still, one needs to respond to whatever their particular situation and you and your son need to move very slowly and carefully and have plans of how to be sure communication is happening.

 

it's a tough situation you're in no doubt.

 

I had an idea now too, if there is anyway to have a plan where your son might stay away from you on occasion that might be helpful. The fact is kids have all sorts of heavy stuff in their psyches about their parents...shadow stuff we all work out in the course of our lives...but when drugs are clouding ones understanding that stuff can come up very twisted and horrifying. It's very likely he wouldn't have such delusions with another trusted adult. Not a guarantee, but very possible. Just something to think about if there is ever a time when perhaps being separated temporarily might be a good thing.

 

it can be something you both talk about as well...

[Edted]

GiaK:

Thank you for a very insightful post. I have no doubt that at least the flavor of his last psychosis has roots in our relationship. He has plenty of things in his upbringing to be justifiably angry about. A 27 year old should not have to live at home. We have talked about his getting an apartment. He would love to be on his own, and I know he needs to be. On his own and in withdrawal is frightening for us both. Who could he trust in withdrawal? Who would he be willing to place in possible jeopardy? It is a tough question, but one we need to continue exploring.

Ed

[GiaK]

actually being alone in withdrawal with the option of seeing you and getting support from you when he needs it might be a very good idea if you can afford to set him up in his own place.

 

of course again, you need to assess whether it's realistic in this particular situation but if he can mostly take care of himself in terms of simple activities of daily living it could be a very good thing.

 

because yes, 27 and living at home has got to be rough...really for both of you.

 

you're clearly a loving and sensitive parent. I feel for both of you.

[Edted]

GiaK:

Although my own resources are pretty limited right now, my son has a work from home job that is providing him increasing financial independence. If things continue on their current track, he will be financially self sustaining within 6 months. He is able to take care of himself, and if he manages his taper (not allowing w/d effects to grow), he would be fine on his own. We will think about this.

Thanks,

Ed

[Jemima]

I don't have any further advice, but my heart aches for you and your son and the two of you are in my prayers. I had an episode of depression in college and I'm thankful to have had a psychologist for a therapist and that she never once suggested medication. Going through a lot of emotional ups and downs seems to be fairly common at that age and it's a shame that our society's first response is to stuff someone with pills. In my opinion, there is no quick fix for depression or any other emotional turmoil, for that matter.

[Edted]

Jemima:

Thank you. I stop myself from going off on the the ignorant, arrogant doctors as much as I am able. Sometimes I rant to myself or with my son and wife because it is just overwhelming....the damage done. At times it is too much to put aside. The guilt that I allowed my teenage son to get on this merry-go-round is something I will just have to live with. I need to undo as much of the damage as I can. Dear God, he is an innocent. No one deserves this. If you knew him you would see how badly this has injured an incredible person. OK, I ranted.

Ed

[tezza]

Tezza:

I am so sorry about what you and your Mom went through. It is heartbreaking to see a loved one that way. Both you and your Mom have memories that no one should have to have. There are so many brave people on this site. Was the problem ever resolved for your Mom?

Ed

 

 

Ed,

 

In the early eighties my father passed away and it was left to me to make sure my mother was well. I had to get two deputies to take her to a hospital. After she was there a while, she agreed to take prolixen shots and finally stabilized one last time. She never stopped taking the shots but several years later, suffered a bad stroke that led to her death.

[Edted]

Tezza:

I don't have the words.

Ed

[Nikki]

Hi Ed....

 

Ed, becoming violent from getting off meds particularly paxil is more common than is actually discussed.

 

It produces a state of agitation that for some leads to violent acts. I admire your honesty in seeking help for yourself, son and overall situation.

 

I don't know how to advise you on this, I can only tell you is that it happens so you know your situation is not and isolated one.

 

Keep looking for answers, they will come. Will send some prayers your way.

 

Tezza...how sad that was about your Mom. Tezza there are so many things that happen in life that we have no control over. Many hugs to you.

[Edted]

Thanks Nikki. I will pass along the info to my son. I hope you are well.

Ed

[Edted]

I was reading the success stories expecting to find encouragement that it will all work out for my son. Maybe I just missed them, but I don't see anyone posting that they were on antipsychotics long term and were able to withdraw. My son's been on them 9 years now. I'd sure like to hear about someone with a similar history who's gotten to be med free and has recovered. Before meds, his problem was depression in his freshman year of college. Inappropriate d/c has repeatedly thrown him into psychosis.

Thanks,

Ed

[Meimeiquest]

I think Gia has. Beyondmeds.com. Best, Meimeiquest

[Edted]

Thanks Meimeiquest. I checked out her site as well. There are stories there of people who were psychotic pre-med and are now off meds and dealing with the pre-med symptoms, but I don't find anyone who is off the antipsychotics and symptom free. I'd like to hear about someone who was not psychotic pre-med and is off meds and not psychotic now. Maybe there weren't many people being put on antipsychotics for things other than psychosis back then.

Best regards,

Ed

[Edted]

Just realized I posted this in the wrong place. Can some

one fix it? Sorry,

Ed

[Aria]

I was on so many neuroleptics I can't remember them for 15 years and have been off them for 10 years. I'm symptom free except for bothersome sleep issues. My story is in the Introduction section under my name and please feel free to PM if you want to. I was told later by several physicians, a psychiatrist and one psychologist I was fine and had never been psychotic in the first place..

[Edted]

Aria:

Thank you soooo much for pointing me to your posts (and for posting them in the first place).I had only read through the success stories section. It is a great relief to read of your victory over these meds. The story is tragic regarding your suffering, but your recovery is a much needed boost. Please keep posting. 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. Thanks again Aria and all the others who make this site the valuable resource that it is.

Ed

[Meimeiquest]

Unbelievable. Good luck!

[Edted]

Thanks Meimeiquest. One of the questions to be answered is if the cyst could be a confound in w/d. Another question will be, when/if the cyst needs surgery, how will they address the antipsychotics (antipsychotics can be very problematic in brain surgery).

Regards,

Ed

[Meimeiquest]

I would think growing cysts could be problematic in psychosis as well...at least wortth looking into. think one of the big tragedies in mental health is that no one seems to look at the many physical things that can and do affect mental health. It seems impossible to find someone who can put all the pieces together. And don't get me started on someone being "asymptomatic" iwhile they require major drugging not to be psychotic!

[Edted]

Meimeiquest: It's not impossible that the cyst plays some role in the psychosis (you may remember he has never had psychosis other than in w/d), but given the prevalence of w/d induced psychosis we wouldn't expect it to be a primary factor. As you said, "it could". All we hope for is an intelligent analysis of the situation by a competent doctor.....amazing that that has to be a "hope" rather than the standard of care.

Be well,

Ed

[GiaK]

virtually everyone on the psychosis recovery page were once on antipsychotics...

 

I'm also free of antipsychotics (tons of them...more than most people ever take!!) and have mental clarity like no other time in my life.

 

see the stories here:

 

http://beyondmeds.com/recoverypsychosis/

 

they don't all tell the withdrawal stories but these are mostly people who once took them

[GiaK]

oh...I just read your concern that the drug triggered your son and that's not what you're seeing in the stories...

 

well that's not actually true...people aren't always explicit but it happens all the time...especially with folks who take antidepressants and get psychotic...the histories don't all go into details with that.

 

also I don't think the source of psychosis matters all that much...the predisposition exists...that is the significant factor...the trigger doesn't always really seem to matter in my experience...and I've worked with 1000s of folks now...that's just my opinion but it really does seem to be the case to me...

 

I think you should take comfort in any story of anyone who has been psychotic and now is no longer.

[GiaK]

I don't understand...the recovery stories tons of people are symptom free...you said no one was symptom free?

 

sorry...i'm really really tired and not reading carefully

[Meimeiquest]

Here's my point: If someone has to take an antipsychotic not to be psychotic (if you're in psychosis in WD, that is the case) you cannot say that person is neurologically asymptomatic.

 

I'm too fresh off Zyprexa to count as a success. But of all the things I was in withdrawal, psychotic was not one of them. The thing I did not expect from coming off: I'm actually much calmer.

[Edted]

GiaK:

The confusion is probably a fault in my posts rather than you "not reading carefully". I understand that folks are not always explicit about what type of drugs they were on and I will re-read those posts. What I was getting at in my prior posts was that I was looking for stories of people who were on antipsychotics, who were never psychotic pre-meds, became psychotic in w/d, and after coming off meds have no remaining psychotic features. I was looking for stories that met all those criteria rather than ones that met some of them. Why is that important to me?...because, as I mentioned in a different thread, the level of violence in past w/d attempts is extremely concerning for the upcoming taper. Even beyond w/d, you can imagine how frightened my son is that it might hit him again some day. You said "I don't think the source of the psychosis matters all that much...the predisposition exists". Has it been your experience that even if psychosis has been triggered in w/d only, that the person will always be pre-disposed to psychosis? I am sorry that you are very tired. Hope you feel better soon.

Regards,

Ed

[Edted]

Meimeiquest:

Yes, we were bemused by the term "asymptomatic" as well.

Particularly when he was at the time experiencing fine motor tremor, migraines, blurry vision, and balance problems. It is amazing that any symptom mentioned to a shrink is a surprise to them because, "it doesn't do that", but at the same time there is no need to look for an alternate explanation.

Regards,

Ed

[GiaK]

well...no...people can heal the sensitivity to become psychotic by becoming AWARE...that is a growth and maturation process...when one matures enough to become an observer of their thoughts and become discerning about the content of their thoughts psychosis pretty much goes away...

 

psychosis is, among other things, a deep attachment to your (not consensually reasonable) thoughts and belief. when your thoughts and belief are dangerous and you're attached to them you're likely to be dangerous too.

 

so no...he will not necessarily always be subject to psychosis to the same degree...but the fact is all human beings can become psychotic under the right (or wrong) circumstances too...

 

also strengthening the health of the body helps this along too...as holistic beings it all matters...everything.

 

the maturation process happens naturally...as you and he struggle to figure out how to get free etc...it's all part of the process.

[Edted]

Thank you GiaK. I'm at work and need to think about what you have said before asking additional questions.

Appreciatively,

Ed