He is saying he needs to go away to get his soul back


#21

@KensMum. – all of my daughter’s treatments were supervised by experts in alternative medicine and yes I monitored everything. I’m very happy for you that its working for your son but the treatment does nothing for my daughter – end of story.


#22

What’s titration Mom2 ? Ken is still on the AP drug clozapine but I’m hopeful that with time, and by this I don’t expect anything less than six months from now he will be able to be weaned off it. Are you speaking about a weaning process ?


#23

@KensMum Sorry to jump in- but titration is weaning slowly and many meds have to be treated that way both getting on and off… my son has been on clozapine for about 8 years now and I have noticed slow and gradual improvement each and every year since…the first year was the hardest with the doctor tweaking the dosages off and on…with no improvements until after 6 months and then all of the voices and visions were gone by one year. It would have been easy to give up and move on but my son had a very good doctor that explained in detail to me how the whole process of the medication worked and why it was such a slow process to change the brain chemistry. He helped me to stay patient and I am glad I did, Everyone is different though and I totally respect that.


#24

Thanks Catherine - so it applies to increasing dosages as well? Except I see there is no blood test to see how the brain chemistry is being altered ? Or am I wrong on this?
My son was on clozapine for about 5 years before this latest re prescribing and although he had regular blood tests this was to check that he was not getting a serious blood condition associated with this drug. The other tests he had done were scans of his brain and tests on how the drug was affecting his heart. Not tests on the chemistry of the brain as far as I know. In fact the doctors always say they don’t know how clozapine works and that I guess is because they don’t test the chemical effect on the brain ?


#25

No there is no test to show the brain chemistry, I simply got an explanation form my son’s psychiatrist explaining that it takes a long time to reverse the effects of schizophrenia within the chemistry of the brain when using the appropriate medications. The test that my son and yours has to have each month (the CBC) is to make sure that their white blood cell count does not go too high, that is the main danger, if it goes too high for more than 2 or 3 consecutive tests then the clozapine registry (the organization that demands the testing) will not approve the scripts to be dispensed from the pharmacy until the blood tests are within normal range…my son’s doctor said that he had prescribed dosages of between 100 mg to 700 mg per day depending on the patient -the severity of their disease and their tolerance of the drugs, my son started out on 150 mg twice a day but did so well for so long that they backed off to 125 mg twice a day (he also developed an unrelated epileptic condition where depakote was used to control seizures) so with that added medication the doctor wanted to see if a slight bit less on the clozapine would still be equally effective and it has been 2 years now and he has been just as stable as he was before…all is good. He is still blood tested every month and his white blood cell count has been normal all along. He has gained a lot of weight but when he stays with the gym he starts losing and he recently lost 25 pounds with regular exercise…the only other complaint he has is that occasionally he drools at night while asleep and doesn’t like that he gets drool on his pillow…I think that also happens because he is missing 3 teeth…making it easier to drool. Otherwise he is good after about 8 years steady and I see small additional improvements with each passing year. I would hope and pray that this drug never stops working for my son. It was the last resort for him after trying dozens of others before hand.


#26

Not wanting to be persnickety but my question for the psychiatrist would be how do you know the brain chemistry is being altered by the drug if you can’t or won’t do a test of the blood of the brain.? Could if be that the drug’s interference with the hormonal system, which is what seems to be happening,is acting to prevent the stimulus that hallucinations and delusions cause, to be perceived. In other words the stimulus is damped down but the LSD effect caused by adrenochrome is still there ? My son continues with the clozapine but I believe it is the niacin that contributing to his getting better and eventually he’ll be able to be weaned off the clozapine. Many years of drug treatment have sapped his confidence however and the social side will have to be repaired bit by bit.


#27

There is no specific test that I know of…The results of the changes are seen in the behavior over time. I mean why even go to a psychiatrist at all if there is no trust in the process at all? You have to do what you think is right, we all do for that matter, but unless you have a degree in psychiatry, it’s still a crap shoot as to what will work long term… Personally I’m not looking for a fast fix as much as lifelong stability…I hope the niacin is your answer and that you achieve the results you hope for, best wishes.


#28

When my son was on the same depot, he also needed to take the oral pills to supplement. Palperidone isn’t as strong as Invega Sustenna which my son took for a while. Perhaps you can ask his doctor to also give him 15mgs of the Palperidone (Haldol) daily to see if that stops the need to run. It did for my son. He is also 25. He takes Palperidone 30mgs oral and now gets a depot monthly of Abilify. This has helped his moods tremendously. He is more social and upbeat, his memory is better, and his is more outgoing. He has met several new friends and now is back in school. The orals also help during that time of the month when the meds from the injection start to wane. Praying for you and your son. Don’t give up and do take care of YOU!


#29

@Catherine. - I have a young friend who was extremely ill when I first met her about 15 years ago as my daughter’s roommate in a group home. 3-4 years after that first meeting I saw her again and her life completely turned around due to clozapine. She enrolled in college and about 3 years ago she received her Bachelors Degree and now has a excellent part time job.


#30

Thank you
Glad your son is doing good.
My son is still adament he.s not ill. He says its not even real medicine they are giving him in the depot.

The psychiatrist mentioned clozapine but its a no go as he wont allow his blood to be tested (incase they “sacrifice”) his blood. Of course regular blood testscare mandatory on clozapine so rules it out.

Its tough.


#31

My son saw Dr. Mensah in Chicago over a year ago and was prescribed high doses of nutrients, of which Vitamin c is the first one on the list. Titration is the slow increase of these ten vitamins a day. I’d like for him to give them another try. He got up to six then went off them due to hospitalization. Dr. Mensah does advise staying on antipsychotic medicine but thinks it can be reduced after some time. https://m.youtube.com/watch?v=_nMcXIoV1VM


#32

Do you mind listing the 10 vitamins?
I’m curious if they have anything different that what’s recommended on this site.


#33

@Jane57 My son does not openly admit he is ill either and gets very agitated when questioned about his diagnosis or when I offer new information to him like an interesting article or something, he will say “stop talking about that!” “I don’t want to hear it!” BUT with him and why I think he is willingly compliant is that he told me once that he use to contend with 1000’s of angry hateful voices in his head every single day, constantly criticizing and saying he needed to die" when this medicine stopped that he said the sudden relief and quiet in his head was so great and so wonderful that he would not willingly ever stop taking the clozapine… and he knows he will lose the med without the blood work…he doesn’t like the tests but he complies and if he didn’t I would use my guardianship to force it…in the beginning I had a nurse come into the house each month and draw his blood to keep the argument and distress lower. Now he goes willingly. Sad that your son’s delusions are still presenting strong enough to keep him from a better treatment protocol…my heart goes out to you.


#34

Vitamin C, B-6, P50, biotin, B12, methlonine, vitamin A,vitamin D, B1, B2 as 5P in the morning.

vitamin C, zinc PicoloNate, vitamin E, biotin, chromium polynicotinate, selenomethionline, methionine, magnesium glycinate in the evening.

It is a pharmaceutical compound made especially for him.


#35

Thank you Catherine, I am so pleased this is working for your son and he has respite from what must’ve been awful for him.
My sons nurse has offered to let him have blood tests in the house but nope he won’t. I’m not sure if it’s him trying to hold some power since he has to comply with the cto etc.
The cto was renewed for another 6 months.


#36

Hi Jane57,
I feel empathy and compassion for you, as I have been through similar situations with my own son, and my son would also say things like needing to get his soul back. Sometimes it seemed like he was talking a different language, but I focused (and still do, when it happens - though it happens less) on trying to discern what he was trying to communicate to me. I did come to learn how to understand what he was trying to say, which often came out with strange words and strange sounding ideas.

It occurred to me to mention that spending time in nature has been so important to my son, and he does best when he has space and time in nature. He was able to articulate that he needed to be in nature, so I have always worked to provide that for him. I thank goodness he knew that would help. I mention it because it may help your son. My son at first wanted the ocean, mostly, and I brought him there often. We would walk on the beach and he would go in for a swim, or just walk in the surf, if it were too cold. When I had enough money, we would eat at a restaurant of his choosing right near the water, which had beautiful views. He loved that. And he would have a beer with his meal, which he also loved. We would not talk much. He usually just wanted to bask in the beauty and peace.

Besides taking him to the ocean, I made sure that the house I rented for us had a large yard and trees, and he spent great amounts of time there. He sometimes slept in the private side yard during the day and sometimes during the night. He loved sleeping in the sun or under the moon and stars.

Now, we live in a different house, as we had to relocate, but again, we have a large private yard with a huge, beautiful tree and lots of room for him to grow plants. It is still very important to him and he still spends a great deal of time outside, focusing on the trees and plants, the breeze, the sky, the little creatures that scamper or fly there, and our two cats. These days, I can see him from the rear windows of our living room, and he almost always looks happy and content, as he gazes at his surroundings and moves to different positions in the yard to appreciate it all from different vantage points. He often comes in to share his thoughts with me, and he is quite the philosopher and has beautiful, deep thoughts.

May you and your son be blessed,

ILoveMySon

PS My son’s psychiatrist told us that delusions are the last thing to go, and that they would disappear over time. I have found this to be true, in my son’s case.


#37

@Jane57 My son said this, and I LOVE it - “Your soul is the part of you for which others are grateful.”


#38

That’s lovely to hear Ilovemyson , it makes real sense that your son can get so much peace from nature and it’s really proving to be therapeutic for him.

My son at times appreciates the “simple” things too. In fact we were at a garden centre a couple of months back and we were outside near all the plants and shrubs etc, it was his first visit there in years and used to go with us as a child. There is a train track at the back and the high speeds trains go past. As a child he,d stand and wait for the trains :steam_locomotive: but that time we went back he said he never was able to see all the beautiful flowers, trees etc as all he ever concentrated on was the trains. It was nice to hear him appreciate that.

Thanks for your sons story, that’s one I’m going to read over and over again.


#39

Vallpen thats is lovely and yes when we think about it that’s what it is.
I told my son the other night he still has his soul as I can see it and feel it when he is around me, he said no I haven’t got it.


#40

Is niacin in there. My son continues to improve btw