Why would someone take a drug for 8 months if it has such awful side effects ? surely if its not working after one month , its worth trying another ? or is it , better the devil you know ?
1 Like
My son has been diagnosed with paranoid schizophrenia, schizoaffective, disorganized schizophrenia, PTSD and has been on at least 7 different AP medications. He was on Zyprexa the longest and had good results in the beginning.
Doctors and we don’t know if it just stopped working OR the illness progressed. I do suggest keeping records of everything. When you go to the doctor, ask for the record of that visit and of course you’ll have the script. I made a list of every hospitalization and the meds he was discharged on. I have not yet got the records to show what all they tried and for how long.
My son is able to socialize some with family but not as much as he could when he was on medication. He even attended college in the beginning but the anxiety was too much. He listens to music and studies pharmacology and chemistry online. He is gifted in knowledge of chemical structures and how the medicines work. He sometimes admits he has schizophrenia but mostly doesn’t want to talk about it and thinks it is a syndrome rather than an illness.
They tell us the meds take up to 3 months to work effectively and we follow the professionals on this.
I guess I am respecting his right for now for lack of knowing what to do next. There are no easy solutions. For a while it looked like we were going to have to as for court recommended treatment but you have to be able to prove that he is a danger to himself or others and at present we don’t have that. He is not agitated now and is loving. He gave us all a hug yesterday that lasted 3 or
4 minutes. We grilled out and he ate dinner with us. After dinner, he said goodby to his aunt and uncle and went back to his place.
He lives next door and we see him every day. Our plan is to build him a small cabin on our property within the year. He likes this idea.
We don’t know if he will get better or worse but he is not abusive like he was last year. He clearly was not on the right medicine. I am learning daily and keep an open mind. I talk to him and listen to him and don’t dismiss him. He makes a lot of sense sometimes.
I have and will continue to keep an open mind on all alternative medicines. I think there will be a lot of new developments in the future and I am hopeful. Stay positive! Take care of yourself and try not to let it consume you. This illness has a tendency to do that. God bless you and your family. I believe you are in a good and safe place for questions and sharing.
2 Likes
Hi. I have experienced what you are going through. Many times with my Son. He finally got on the right medication, Clozaril, and is doing so well now. Sometimes it can take a few months to see how the med is working before trying something new. He still has some auditory hallucinations, but he gets through them with his coping strategies and talking to my Husband and I. I hope this helps and best wishes to your child and to you.
2 Likes
CBT - cognitive behavior therapy is helpful with schizophrenia. My son won’t take meds but he has worked with a CBT therapist since last November. CBT helps him handle the symptoms of his illness. His therapist works with him on what he wants to work on. His original goal was to be able to grocery shop again. She helps him apply cognitive behaviors to his interactions with other people.
He hadn’t grocery shopped for himself in several years, now he grocery shops for himself about every 10 or so days.
5 Likes
I’m glad to hear that CBT is working to increase your son’s independence, Hope. I plan to strongly encourage my son to try CBT, once he’s discharged from the hospital. AP meds, even those known to be the best, are unfortunately not having optional impact. It looks like he may be med resistant. We do need to add some sort therapy to his treatment and it sounds like CBT might be the best option for his diagnosis. Here’s to hoping…
1 Like
I am sorry to hear your son might be med resistant. It can be so difficult to get them to try things. My son came up with CBT on his own. Scz is such a mystery, my son believes the things he hears and sees are real, yet at some point researched therapy and came up with a CBT therapist all on his own.
Here’s to taking it day by day:)
1 Like
It is such a long hard road for all of us with this disease. How old is your son and how long did the zyprexa work for? My 22 year old son is currently on 20 mg zyprexa and he still gets episodes where he hears the voices very loud and disturbing at least 3 times a week. I don’t like him on the meds either as the side effects are horrible and I wonder always how long they will help. Sometimes he will be fairly social and play video games with a friend, but most of the time he is with family, mostly me, or alone in his room. He is scheduled to move into a government subsidized apartment very soon, but I worry he will become more reclusive there. At least it is only 5 min from my home. But still it is so hard to see him suffer so much.
1 Like
Our son just turned 23 and has been on Zyprexa 20 mg and different medications at different times and just as you experienced still had break through episodes.
When he is medicated he doesn’t have days and nights where he is fearful. He sleeps a lot more and eats a ton more than unmedicated.
Irene and/or anyone else:
What are the horrible side effects your son is experiencing from the Zyprexa? My son was on it for a period as well. I’m always trying to understand the differences between side effects of medication versus symptoms from the illness.
Hi Day to Day,That is a hard one to differentiate the side effects and the symptoms. Some of the side effects are sleeping a A LOT, drowsiness, and some weight gain. The social withdrawal is symptom of illness as is lack of motivation.
Hi Mom 2, My son had an episode today around 2 pm so he took his zyprexa early and lorazepam and he was so drowsy when we took a walk after dinner and now he is sleeping. When he gets the episodes, he hears the voices and stars shaking badly and then he want to take his meds He feels better about 2 hours after he takes them. Usually he takes the zyprexa at night and doesn’t take the lorazepam unless he is feeling bad anxiety. He doesn’t have that big of an appetite, probably because he smokes. He has gained some weight from zyprexa, but it not any more in last 6 months. Always learning from this forum.
1 Like
Irene, it was gradually increased to 20 mg and I’m thinking it worked for about 2 years. It is hard for me to see if it is the illness progressing or medication no longer working or both.
My son relapsed after almost five years on antipsychotic which worked well enough and all was sort of fine. But things became extremely stressful for everyone in the spring, and especially for my son who has paranoid schizophrenia, diagnosed Jan 2013. He’s now 30. Well, I wouldn’t say the medication stopped working suddenly, it took several months for the psychotic episode to really come to a head. Poor guy!
This could be called breakthrough psychosis. And stress is pretty much the main reason for relapse, aside from not taking medication, just what I understand from always studying this puzzling, heartbreaking disease.
2 Likes
When my son was in the hospital the first few times, I questioned every medication they had him on and if he was taking them. In the beginning, they really didn’t know he was cheeking them until they cleaned his room. As he got smarter he made due to flush them so they would t know. So basically, these patients are in the hospital not taking meds. I was the one who pushed for injections. Yes they are expensive but so is hospital day cares. I don’t wish to offend any here but We try our best to keep our loved one out of hospital. I have had nurses tell me that sometimes the meds stop working and they see that all the time. I question if enough research has been done on starting and stopping these antipsychotic meds and the effects on the brain. I’m not a psychiatrist and have trusted them and will continue to trust them. I’m not against the meds but when someone fights taking them so often, we have to be willing to try other methods. I believe that from our experience they work less and less with each admission. I don’t know if this is progression of the illness or the medication itself.
I believe diet and excercise are also as critical to their well being. His doc did tell my son to go to the Y and stay there all day. I am also switching to a lot of gluten free product since it is so available now.
I made another appointment for this week with a new doc and therapist. Let’s pray he will go and try to get better. It’s truly up to him. Thanks for being there!!
4 Likes
I believe it’s the psychotic episode itself causing disease progression and with each one the medication works less? Or needs changed. I see a difference in my son after relapse. He’s not back to where he was before. They put him on the highest dose of invega sustenna monthly injection, which is same med, highest dose now. Where do we go next time?? Sad. Scary. Puzzling.
1 Like
Yes, I have witnessed this same thing. Private insurance put our son in 4 different times to drug and behavioral hospitals that lacked the expertise needed to treat his illness. They did diagnose him eventually as paranoid schizophrenia. When they had problems with him, they moved him to another unit, then another and when his doctor told me, “if I put him on the military wing, they might kill him.” I said I will pick him up. We have picked up our son many times before he was clear. This was the only time I did against doctor’s orders. The other times, the insurance would not pay beyond ten days.
So now he goes mostly to state hospital each time. Even in the state hospitals, I hear “This might be the best we get.” I’ve heard more than once. Still I am hopeful new meds will come along that help them live better lives. Not one doctor has proposed Clozaral for my son.
2 Likes
My son stayed two weeks this last time. His discharge papers said his condition: Critical. Imagine that? Released from a hospital in critical condition!
1 Like
Or acute is another one. I agree this is bizarre. My son has stayed as long as sixty days but it is usually thirty.
1 Like
What if they do not take medicaid. My daughter had a mental Health team but all they offer is peer support.
Do you have a local mental health center where he can see a psychiatrist, therapy and that takes Medicaid? Peer support is good but not every place has it. I wish you the best in finding help for your daughter.