Needed to talk and I chose you all


#1

I have written here in the past but it’s been a long time. My 24 year old son has had addiction and mental health problems since he was 15. His first psychosis was at 15, drug induced. He has had many since. When he was 16/17 he did the insane drug, “bath salts” for months almost daily. We finally had him sent away for 2 months and when he came back he was better. Then he got into cocaine and molly. For years he was in and out of the hospital with psychosis, sometimes drug induced, other times for no apparent reason. He mostly gave up the drugs at about 21 years old but found a new self medicine in alcohol. He drank daily. He has had many jobs over the years but none last more than a few months and he is fired. Mostly for his weirdness. (I can’t explain, I just know people end up not liking him.) He hasn’t had even one friend in years, so the only people he has to talk to is me, his dad, and older brother and sister who have families of their own. He’s gone years with only a text from me or my husband. )<: In the past 2 years we had sent him away for over a month 2 times to alcohol/ drug addiction centers. The last time they called us to come pick him up early because they said his mental health needed to address and he needed hospitalization. That was a little over a year ago. With all his psychosis’s he never heard voices until last May when he started talking to himself. In the past psychosis’s he was always dx. bipolor/mania, because he mostly had delusions. We could always get him back after a few months at most and then we’d have times of clarity with him. Since June 1st, he has spent most of the time in the psych ward. He was doing better the last week in June so we took him out and sent him to a day treatment who after the 3 day had him MHA and he was sent back to the hospital. He was doing better again July 13 so we got him out and took him to the mountains for peace and quiet only to bring him home 7 days later as he was really hallucinating and was scary. It seems when he is in the hospital with no stimulus’s he starts to do better. He can control the voice’s better, but as soon as we take him out, within hours he starts non stop external verbalizing. Oh, did I mention that since the middle of May he was walking between 25 and 40 miles a day. Many times he walks all through the night. He’s lost over 100 pounds in 5 months. I visit him daily in the hospital, only to leave crying because he begs us to help him come home. Did I also say, he has ALWAYS taken his medicine faithfully, but last January he was doing so well he talked his Psych Doc into letting him come down on his risperidal from 4mg to a half mg in less than 3 months. After the first month, I saw the mania coming full storm, no sleep, no eating, etc. and I kept telling my son you have to go back up on your medicine, but he just saw it that he felt wonderful and wouldn’t listen. Of course April, he and his Doc finally realized and jumped his dose back up but it was to late. The voices had quietly started and my son stopped talking. It was very hard for him to verbally respond to a conversation. During all this time, his Doc thought that maybe it was the risperidal making him all of a sudden have the voices so they abruptly stopped the risperidal and started him on Depakote and abilify. He has been in the hospital again, since July 23, he is better. I can talk to him and the voices are quieter, but I know the minute he comes home they will start torturing him almost immediately and he will probably become verbally violent, start walking excessively. My fear is he will start acting on the voices. Did I mention his dx. now is schizo-affect. My father, brother were both dx. with Bipolar. Both died at the age of 40. My oldest son who is 18 years older than my youngest also was dx with schizophrenia 20 years ago, but is dong great. He’s married, job, kids, etc… He too take his medicine faithfully and he never had any kind of substance abuse problem. So much more to this &*## our family is going through, but I have to get ready because visiting hours start in an hour and he so looks forward to me coming to see him. We play rummy 500. Sorry for ranting, but I can’t do it anywhere else. God Bless all our families who have a loved ones like mine.


#2

Have they ever tried your son on Invega? My son has schizophrenia and it is the best thing that has worked for him. It comes in a 1-month injection and also a three-month injection, so they don’t have to take medicine everyday.


#3

This runs in my family. Both grandma and mom had schizophrenia and now my daughter. I’ve been taking care of her for over 13 years. She is stable but still has auditory hallucinations. When I realized the medication wasn’t going to be the remedy I was led to believe, I settled in to the new reality many of us are living in. Slowly I began to look elsewhere for ways to improve her life as much as I could through nutrition, supplements and essential oils. But mostly a loving environment. And that can be hard sometimes when you just want to go to bed and cry. If you google nutritional psychiatry, you can get an idea as to what this is about. Those who have made a full comeback with medication alone are truly fortunate.


#4

He won’t try the Invega. His doctor has asked him many times. He does take his medicine faithfully though.


#5

My oldest son is very lucky the medication work on him and he has a real good life. My youngest, I don’t know what’s going to happen. I will google, “nutritional psychiatry,” and learn what I can. I do go to bed and just cry. I am so pissed at God. He couldn’t spare just one of my son from this horrible disease!? Like I said, I chose you all, because none of the rest of my family could ever understand. Thanks for listening.


#6

It does sound like schizoaffective :frowning: My son has paranoid schizophrenia as his diagnosis. He was on risperdal first but didn’t do well because he wasn’t good about taking it for one thing. He was placed on invega sustenna monthly injection and has been now for five years, with one relapse which was last summer. Now he’s on the highest dose. Unfortunately, he has the dual diagnosis of substance abuse (for him it’s marijuana). He’s all negative symptoms :frowning: So hard to see. I’m sorry for your son and family :frowning: and hope you find something that works for him soon.


#7

My son smokes pot as well. As we know the pot is bad for folks with sz. His doc said not to smoke it with his “condition” but he also said they were seeing good results coming back from studies with CBD. I bought my son some and recommended he vape that vs smoking pot with THC. Will he? I don’t know but at least I provided the better option for him.


#8

So, the last 4 days my son has been in the hospital, he’s been pretty normal. No talking to himself, no glassy eyes, he’s sleeping. He can focus, read and have a real conversation. With his Doc’s permission I showed him a 3 minute video tape of himself, taken an hour before he was MHA. It bothered him and he replied he didn’t remember any of it. He said he had to be in a trance. I got a little perturbed and told him it wasn’t a trance, it was severe, dangerous psychosis. The only thing different they have done while he’s been in the hospital these past few weeks was raise his abilify from 10mg to 30mg. He still take 1500mg daily of depakote too. I love him so much, but sadly I am not looking forward to him coming home. He is very demanding and he exhausts both me and my husband. I just don’t get it how well he snaps out of the psychosis just from being in the hospital environment. daquilamarguerite1, do you really believe there is a difference between schizo-affective and schizophrenia? I just wonder if most of his MI is from the insane bath salt drugs he did when he was young. Hope everyone who has a loved one with this awful disease has some peace this week.


#9

Dr Amador would probably suggest that your son was “confabulating” when he said he must have been in a trance after you showed him the video.

Confabulating is how the scz keeps your son from actually realizing he was in a psychotic episode - when you can clearly see that he was in an episode.

The tricky part about confabulation is that your son really believes his brain’s explanation that he must have been in a trance.

Glad your son’s last 4 days have been better. I hope you have peace this week as well.


#10

@Robin I have learned that this illness can keep changing what it does in the brains of our loved ones. Also, that it can take a long time to come up with a best medication(s) and/or treatment that works. Maybe the change in your son’s medication will help things be better. I encourage you to keep in touch with his doctor. HIPPA laws are not as prohibitive as most people think, but even if his medical providers don’t want to talk to you, you CAN give them information about what you are observing. I find that email often works great, where that is an option for communicating. FYI, I met a mom who had 3 children and all had either SZ or BP. Life is not fair and it never has been. This is a terrible illness. Our 2nd young adult child now realizes the increased possibility of yet getting this illness. What a worry to carry!


#11

Has he tried the CBD?


#12

What is CBD? If it’s cannabis, he can not do anything like that. The second he does he has psychosis and it lasts for days. Even he is afraid of pot. I’m bringing him home today sadly. I wish they would just keep him for another week and let his brain heal and rewire even more. I’ve alienated all my family/cousins and friends because I don’t want them to see my boy act the way he does. I have to keep reminding myself he isn’t doing this to me, it’s not his fault, it’s my genes that he unfortunately inherited. I keep thinking as he gets older it won’t be so bad. His brain will balance things out and figure out how to control what’s happening to him… In reality I just don’t know and I’m just feeling sorry for myself, again.


#13

@Holly67 - He took some orally. I’ll have to ask about the vaping. I’ve tried it as well. People out here with health issues thinks it helps. It has even helped cancer patients. For me it’s for my joints. I got the one with olive oil - not a great taste. I got my son chocolate mint. He said it didn’t taste great either. I got these form Charlotte’s web (admin - this isn’t a promotion). I’ve gotten it before from a dispensary and that tasted ok but had some thc in it which was not good for me. I will ask him if he’s still taking it and what he thinks.


#14

@Robin CBD is from pot put has NO THC in it (if you get the right one). If he is not interested in pot I wouldn’t bother with the CBD. I wish they could keep your son longer as well. Perhaps with the new dosage he will do better. It sounds like he is doing better already in this hospital. Keep us posted.


#15

I am just curious as to how he has responded to the CBD. I use it myself to sleep. I work for the county so I have to make sure there is no THC and it has worked very well for me.


#16

I am so sorry you and son are struggling so much. as an other poster said … . Do ask the doc about Invega Sustena monthly injection. I has worked well for my son. Because he doesnt’ think about taking the med daily, there has been no compliance problem.

Also check out the work of holistic psychiatrist Kelley Brogan. One of her testimonials is from A mom with a son so severe SZ so bad they were looking at assisted suicide, He has seen huge improvement by following her protocols.


#17

I brought my son Alex home from the psych ward yesterday at 10:30 am. He was better, but I knew he shouldn’t be coming home. It was to soon. He needed at least another week to let his brain rest and rewire. By 11am he started mumbling to himself. Before we even got home he was yelling at other cars. Long story short, he never slept last night. He is walking, pacing and flailing his arms at whoever is talking to him in his mind. I just want to cry. Our house is small as we downsized when the other three kids started their own lives. 1000 sq. ft, so my husband and I heard him talking loudly to himself all night. We tried to calm him a few times but it seemed to just agitate him more. Any suggestions I’d appreciate. I’m sure it the stimulus’s of the outside world that are hard for his head to take in. Robin


#18

Hi Robin, Sorry you have to go thru this. From my experience with my son, I would suggest to keep everything as calm as possible in the house and talk to him in a low calm voice. Do not ask him a lot of questions and or make too many suggestions. Hopefully this will go away in the next day or so, if not call his doctors. How horribly stressful for all you. Hope today will get better for him and he will find some peace.


#19

Robin. I have come to believe that my son’s scz is worse around us - his most hardwired delusions are about his dad. Does your son receive ssi or ssdi? Can he live somewhere else?


#20

Robin
You’ve really been through it all. I am so encouraged by you strength and resilience. Our son’s story is not all that different from yours and what you say helps. Dory from Finding Nemo comes to mind, “Just keep swimming, swimming, swimming.” Sometimes that’s about all we can do. Thanks again.
Bob