Family and Caregiver Schizophrenia Discussion Forum

Recovering From Invega Sustenna

#1

Had 2 injections forced on me for initiation (234 mg) and loading (156 mg). Everything was taken away and have slowly regained emotions fully, can hold conversations, memory is functional, yet far from my previous IQ of 174, bowel movements now regular, now have insomnia, and tried to run a mile and it nearly killed me. (Heart arrhythmia and used to be a professional runner). I now take 13 supplements daily and noticed an increase in libido, memory, and concentration over the past week and a half. Will this ever improve fully, as I have noticed only a slight improvement immediately upon initiation of the 4th month. 4.5 months now.

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#2

Sorry to hear about all that. It sounds really difficult.

Were you involuntarily committed, or taken to the emergency room during a crisis, or something else?

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#3

Involuntary commit unfortunately and received a laundry list of side effects from an adverse reaction. Surprisingly, supplementation is effective despite affected individuals stating they feel no effect and clinicians stating no conclusive evidence to support their use as a proven treatment; however, naturopaths would term supplementation as biobalance therapy. Still recovering gradually like the arrhythmia resolving somehow. The cacophany of bodily issues will resolve themselves on their own time.

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#4

The interesting thing is that everyone can responds differently to the same treatment… whatever it may be…

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#5

I see. Really sorry you had to go through all that!

My brother is diagnosed with Schizo-effective disorder (and several other disorders). He has gone through similar events, including a really severe episode of hallucinations, suicidal thoughts, many many physical symptoms. At the time, he asked family to bring him to an emergency room. Unfortunately, his disorder compelled him to say things that were shocking to us family and the medical staff. He was under so much stress from his episode that he didn’t seem to remember any of the things he had been talking about and tried to fool the doctor into thinking he was fine.
Ended up talking himself into an unfortunate position and he was involuntarily committed for a couple of weeks.
I felt really bad about the whole sequence of events.

When he returned to live with me again, he suffered from a lot of the same symptoms you mentioned. Irregular heartbeat, exhaustion, emotional numbness, and a whole lot more.
We all (him and the family) thought it was connected to his medication for a while.
But he proceeded with treatment (medication and doctor visits) and recovered.

Then he had another psychotic break with traumatic hallucinations, physical symptoms, the whole nine yards. He asked to go to the hospital again. So, we took him. They didn’t modify his medication, instead kept him on the dosages he had been on while he was feeling better and having less symptoms.
He felt the exact same “side effects” mentioned before, despite his medication remaining consistent.

This has happened a few times (to varying degrees) over the past several years.
I’m now looking back on the events and the factors and seeing that the psychotic break is probably causing these “side effects”. The emotional numbness, not feeling “like himself”, poor memory, lack of energy, irregular heartbeat, muscle spasms. All stuff that only ever effects him after a psychotic break, regardless of what medication he is on (if any).

I know, the next logical question is:
“If he is on medication, how can he have a psychotic break? Shouldn’t medication at least prevent that?”

Well, exactly and yes.
He insisted on managing his own medication for several years and refused to track dosage, count pills, or have someone else do it for him. By his own account, he has probably never taken all of his medication properly every day for more than a few days at a time… A compounding effect of SzA and inconsistent medication made it impossible for him to be so organized as to administer his own medication (at least, until he has had someone assist for several months to make sure he is on track and balanced out, which helps his memory and his organizational ability).

I wonder if what you are experiencing is a symptom of recovering from a psychotic break like the kind my brother has experienced?

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#6

One commonality I have noticed is individuals drawing a correlation between another’s stated issues and their purported condition; however, correlation does not equal causation. This current landscape of reality espouses maintenance of a lucrative business model withstanding any inquisition. I am glad to hear he recovered while taking the medication without cessation.
I will always think “differently”, which I attribute to disparate thinking that occurs after an IQ of 160. I am aware of the 50% anosognosia for sz, but that doesn’t dismiss the unwarranted risks. The drug can be effective for people truly suffering and I am sorry for the many who chose to take their own life as all AP’s are known depressants.
Unfortunately, many articles exist for individuals prescribed that class of drugs committing suicide. Psychiatrists have a certain level for standard of care while abiding by the Hippocratic Oath to do no harm. Doctors are entrusted with saving lives not taking them. End of my verbose spiel.
The medical complex is too large in scope and scale to enact meaningful change, but the current setup of pharmaceutical companies issuing remuneration for prescribing drugs is abhorrent and ineffective. I even read anecdotal evidence that individuals with depression were prescribed the depressant, Invega. Memory thankfully does restore, as I could remember almost anything previously. (Did notice repetition on some posts indicative of memory loss.)

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#7

I correctly or incorrectly believe the drug induced schizophrenia psychosis:

The B.E.A.M procedure by Jose Mackliff is a safer alternative for those suffering from sz. Studies were discontinued and new studies were foregone studying the efficacy of the procedure, as it would eliminate a substantial revenue channel:
http://beamprocedure.com/drmackliff.htm

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#8

I think I get where you’re coming from.
I agree that it seems strange that medication designed to treat depression, Schizophrenia and other disorders have listed side effects that include depression (and other frankly concerning things).
I also agree that medication should be taken seriously as a topic of research in people who are prescribed (and their families as well). Being prepared is always a good thing, knowing what signs to look out for and what to do about it especially.

But I’ve also seen the vast and clear difference between an effective treatment program and “just dealing with it”. First hand with my brother and also through reading this forum and the sister forum:

I don’t mean to try to convince anyone to do anything other than just promote a positive lifestyle, goodquality of life, opportunity for peace and contentment and the ability to achieve a level of satisfaction in daily life.

Those are things I think most people are too willing to sacrifice. Either through a familiar level of discomfort, or out of stubbornness (and that’s all people, not just those diagnosed!)

So, I think you really do deserve to have relief from side effects and symptoms. You deserve access to the kinds of treatment -you- think are appropriate.

I also want to point out that it’s difficult to draw the line between symptoms and side effects sometimes, I realize that I’ve probably been wrong in all the possible ways about where that line lies more than a few times (from mistaking prescription drug abuse / mismanagement for symptoms. And likewise, mistaking symptoms as side effects of medication).
I’ve also witnessed my brother mistake the difference himself at the same time.

Yes, there is plenty of material on the internet to support whatever anyone wants to believe. If I wanted to believe that dinosaurs never existed, I could come up with at least one article before the weekend. I could also find an article stating they exist right now. Both misinformation, or facts skewed so heavily they become false.

Is medication powerful and does it require careful administration and observation?
Absolutely.

Is it so horribly flawed that it’s creation is nefarious, or it’s use unethical?
No. It’s the best we have today.

I certainly understand your aversion to Invega Sustenna. I’d probably feel the same, if I had the same experiences.
But that’s not the only option out there and I believe (I feel like I have to believe, as a brother of someone diagnosed);
That there are effective treatment programs out there. They may start with just talking to a group (like this one, or one of the many others), or they might start with talking to a psychiatrist. But any way it starts, it should result in clear, obvious improvement in quality of life overall.
I think anything short of that is a waste of time.
And that’s really sad part about Schizophrenia. It wastes what would have otherwise been the best years of a person’s life if it goes untreated.

((Also, I’d caution against getting too excited about people who claim they have a “cure” for anything. I have my own chronic, life long medical conditions which people seem to get a kick out of announcing they have a “cure” for.
Often, it’s obnoxiously premature. Regarding a procedure or a drug that “could” work… If only it didn’t kill patients or ruin their liver first.
Just because something works on rats, or dogs, does not give it any actual merit as a potential treatment for humans.))

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#9

Yes, just because something is on the internet doesn’t mean it’s true. I am sorry you have had to experience the drawbacks and despair associated with mental illness. Everyone wants a healthy quality of life without stubbornly ignoring stressors in their life. We all have struggles that manifest in various different ways.
You are right there are various alternatives for treatment that can be effective or detrimental based on one’s personal experience. (Detrimental in my case) I believe we live in a culture where taking a pill has become the preferred option for resolution, rather than exerting effort. Along that vain, Sarcosine has been proven as an efficacious treatment for sz without the negatively impactful side effects.
I know the studies say AP’s improve social and cognitive function while Sarcosine displays improvement when concurrently administered with AP’s.
Symptoms and side effects is a muddied discussion similar to the chicken and the egg. I fear that debate will be ongoing for eternity. I won’t need to try the treatment, but early trials of B.E.A.M on humans resulted in full improvement of negative symptoms: the symptoms I had to learn about through this experience.
I guess my idealism must be reserved in the future so it isn’t incorrectly perceived as a delusion. Success is achievable by anyone though given the proper work ethic; however, the path is more circuitous and difficult to navigate for some like your brother than for others. Keep up the good fight and I will do the same!

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#10

“I believe we live in a culture where taking a pill has become the preferred option for resolution, rather than exerting effort.”
Couldn’t agree more.
A coworker a long time ago once said (about her own disorder) “The pills are there to help make doing the work a little more tolerable, but they don’t do all the work by themselves. I have to try really hard if I want things to be better.”
I believe it whole heartedly (even though I sometimes have to remind myself to clean up my diet and get back in the gym).
But, as you said. The specifics of medication and symptoms can be a never-ending conversation.

I appreciate the kind words!
We’re all rooting for you, dude. If you want someone to bounce thoughts off, share articles, or help research treatment options; this community is a really great resource. If you just want to vent, we’re good at listening, too!

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#11

Any and all insight and support is welcome and appreciated for a newbie that had the motivation to figure out the meaning and intricacies of recent events after my motivation was restored. Username Shamroidz conveyed the positive impact of Sarcosine after discontinuing Invega and starting another AP.
I have noticed initial improvement in memory albeit nowhere near previous levels yet. (Less than 2 weeks now) My fortune cookie said “Don’t repay a kindness, pass it on.” I am a firm believer in paying it forward, so hopefully Sarcosine can help your brother as well.
Everything will pass with time. It might pass like a kidney stone, but it will pass!

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#12

Oh just to clarify pure Sarcosine has been shown to cause issues in people with sz as it is a complete dopamine agonist (increasing the cause of psychosis) and excitant (overstimulation). I personally use dimethylglycine (DMG), which is safer acting as a partial agonist.

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#13

Check out bluelight.org. Search invega sustenna. There is a very active discussion on there about coming off this drug. A lot of people have these reactions to this drug.

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#14

I may be hyper vigilant about things that seem to discourage others from considering medication in general.
I apologize for coming on “fire and brimstone” about it. I re-read what I wrote and I can see how the text seems a bit competitive. I’ll have to work on that going forward.

Anyway,
I am really glad that you are in a recovery phase. I definitely want to encourage you to keep doing things that get you good results long term and to keep exploring and researching treatment options.
I think a priority for anyone who has experienced what you have (along with family and support teams) should be to try to ensure that you don’t have to go through those things again.

I’ve been there for my brother through too many years where he felt like he was “just hanging on and hoping things get better”.
There have been times when that was the only option, but there have also been more times when it was due to his own refusal to participate actively in his treatment and in daily life.
He’s told me that he looks back on years of shutting himself inside and using tv and video games as distractions from his issues as a waste.
I think that is one of the very real threats of the disorder.
To look back and feel like he has wasted years of his life just trying to cope with things in an unproductive, unhealthy way.

A big component to his quality of life has been getting his medication administered carefully. But also, as you pointed out, establishing a lifestyle that promotes healthy habits so that he can feel comfortable physically reintegrating with society.
I have reservations about the term “holistic medicine” or “holistic approach”, but the idea that major issues like Schizophrenia need to be treated by incorporating all facets of a person’s lifestyle and by making treatment a daily objective is the only way.

Diet, exercise, supplements, medication, therapy, family support, support groups and a daily regimen of goals all work in a clearly profound way. Combining all of those things has made life a lot better and the future seem a lot brighter for my brother. Not that he doesn’t still have issues, just that they are more manageable now than ever and seem to be getting easier for him.

I could write several books worth of “what happened and how” as well as “lessons learned” regarding Schizophrenia, and I still feel like I barely know anything about it. All the more reason to keep researching and to keep observing how well various treatment options and lifestyle changes impact the disorder.

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#15

I agree with this all together… I would even throw in the idea of spirituality… whatever form that might take is important…overall it is a holistic approach.

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#16

Thank you for the great advice. The Bluelight forum was a practical resource, as I would estimate around 97% of people recover: hence, the reason the drug continues to be sold and administered and must be administered monthly. I will try Uridine, as it acts to develop receptors like Sarcosine acting directly on NMDA receptors. St. John’s Wart looks promising to act on GABA neurotransmitters affected in the colon.

Either way, I have been ingesting dimethylglycine (Sarcosine) alone and am noticing an increase in mood (read: happiness), memory, and speed of cognition. The constipation has returned along with intermittent and sporadic insomnia after supplementation. Expectedly, the drug is still present in a large enough volume to enact negative symptoms in what some patients would describe as “waves”.

I will always be a staunch proponent of natural remedies, as unmedicated individuals have shown the best long term outcomes.(i.e. John Nash - rest his soul) Thank you again, as Bluelight has a bevy of information including 380 pages (looks like 15 posts per page (5700 posts), but I didn’t take an exact count) for thread v.2.

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#17

I can unequivocally conclude the drug has profoundly negative effects on someone’s entire body. Bluelight continually reiterated exercise was effective. A 1 mile run restored my heart rhythm and ran 2 miles in a blistering 15 minutes today requiring a normal bowel movement toward the end. Pales in comparison to 20 miles at 5:03 per mile, but is a step away from being rendered bedridden.

I was in 4:18 mile shape off minimal training before the shot. Koz26 was a professional MMA fighter and ended up returning to the ring. You can return to previous form, yet the journey requires effort beyond the right pills.

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#18

Getting back into shape is a huge topic, especially if you’re over 30 (like me).
It’s helpful (to me anyway) to remember that just about everyone gets thrown a few curveballs that interfere with their plans for themself and their big goals. I look at fitness, strength, mental/physical/emotional health as a set of life long goals. While I could be constantly disappointed with my 2 mile sprint or my 6 mile run or my max bench press, I try to instead focus on what my 60 or 80 year old self will be like. It is satisfying to know that it’s entirely likely that I’ll be strong and healthy that late in life all due to the fact that I never gave up on myself.

I think the same motivation and mentality applies, even in your circumstances. It’s okay to be frustrated by the events and outcomes we couldn’t predict or control. But it’s important to accept things as they are (even the hard truths), then be determined not to let it convince you to quit.
You seem like you already know all that, but it’s worth pointing out.

Yes, medication isn’t perfect and there is much left to want in treatment. But I’m really glad to hear that you are actively exercising and seeking effective treatment!

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#19

Yes, consistent effort applied daily will yield results over time if you continue diligently. When I coached this expectation was set upfront, since some of the prescribed workouts would test my athletes’ personal physical limits.

Comparisons are an awful practice when you’ve been damaged, since my body fat was in the low 3’s with a resting heart rate of 35. We all have to start somewhere and I believe anything is possible. Part of the reason for the sz diagnosis is insisting that I was fully recovered from a TBI probably because I kept working out. I was never supposed to walk again, yet did while maintaining full cognitive ability. On this drug, I now feel very sorry for the many unfortunate folks who don’t recover like I do. I guess they learn to live with their altered state.

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