My son started with positive symptoms about 5 1/2 years ago. It has been a journey with many ups and downs, but for the last 2 years or so he has been positive symptom free on a regimen of both a 1st gen and 2nd gen antipsychotic and an antidepressant. He has had many good days, but always struggled with sadness. A few weeks ago he began self-injuring and wanted to go to the hospital. While at the hospital the doctor discontinued the 1st gen medication and started him on depakote. He struggled for about a week, then showed signs of better mood and behavior than he ever has. Unfortunately, the last few days he has become angry, sullen, and wants to self-medicate again. He says he misses his voices. I haven’t heard this from him in over a year and a half. I don’t argue about how “real” or “unreal” they are. Their affect was much the same as had they been 'corporeal beings" . He often felt bullied and wanted them gone. I am stunned. I just don’t understand where this is coming from. Has anyone else had experience with this?
Yes, it’s not uncommon. My granddaughter went through the same thing. I think part of the problem is that life of a person with sz is quite lonely–at least it is for my granddaughter. I think she missed the ‘company’. I don’t think she missed being tortured by her voices/the two guys that always show up, but I think there is a void when the voices, etc are suddenly gone. It was a temporary thing for her and I don’t think she misses them any longer.
My son has voices he enjoys talking with - he seems to find them to be excellent company. He never talks about them, he never talks about any of his voices. When he hears voices saying mean things he believes (confabulates) that its real people saying mean things to him. Even if no one is around, he still believes its real people. More confabulation - must be an implant or whatever. Its all not real.
The Peer who spoke to our FtF class said the voices can be quite seductive. Not necessarily in a sexual sense, more like captivating.
I know he has voices he enjoys because I have heard him talking to them. He seemed to really enjoy their company. I would imagine my son would be quite lonely without those pleasant voices in his life.
Yeah, I believe its called ego syntonic. My brother has not had this experience to my knowledge but I have had a patient who fell in love with their one of their voices. After almost 6 years it wouldn’t surprise me to think he built some sort of relationship with them, positive or negative
I wonder why some people have pleasant voices and some people don’t.
@Cura - ego syntonic - yes, I can see that - my son laughed and was totally delighted when he said to one of the voices. “How do you know these things?”
@Lioness - I wouldn’t know my son had a pleasant voice if I hadn’t entered the room without him knowing.
My son has never said he hears voices to me.
Mi son took me ,the voices are your only company sometime he miss it too.this I’ll it’s so hard for the family .we isolated too .as parents .I never going out again .just for work I don’t going where I felt he can be stressed .idk if happen with other families o just mine.
I think it happens in many families.
That sounds very familiar, especially trying not to go places that are stressful. It takes so little to bring on anxiety. Sz is such a rollercoaster with unexpected highs and lows. Hang in there. This is a good place to come when you feel you are the only one going through this.
My son like his voices but only when they are saying nice things and it is hard because you can’t predict when they are going to turn nasty from what he has told me they get nasty when he is under stress and strat telling him how worthless he is. So right now the voices are tolerable but not comfortable because he is in a Vocational rehab program and trying to get job skills and a job the doctor has upped his meds and added additional meds but the voices are still there so we just wait and support him best we can he has had 4 ER visits since March all were for various things and none ended. In hospitalization
I had voices and hallucinations for a long time. They went away about five years ago; I remember the exact date. It took me years to stop missing them. Now I am really interested in certain aspects of shared reality like pets and plants and trees and the sky. It took me a very long time to accept that they were gone, but I understood why they left and I also agreed to it. I do not have sz, but a dx that is less serious, so I don’t know what it’s like for people with sz to miss voices. But time heals all. Just takes longer than we’d hope.
This is comforting to me. It’s so hard to understand. To be out of the loop - out of that aspect of his life. You see how they can torment him and then he misses them and it is so hard to understand. Thank you for your honesty and reply.
Due to the nature of the hallucinations I was experiencing, my diagnosis changed when I was in my early 30’s. I have Major Depression with psychosis and PTSD with dissociative features. The reason this is important is because my treatment, which I never got consistently until Obamacare started, is based in the depression dx and finding the right counselor and meds, which took forever, keeps me from getting so depressed that the psychosis kicks in. Also, many people with PTSD experience hallucinations but do not lose insight and my counselor was able to help me recognize this. So, I am super lucky because my dx change led to treatment to what would actually ease symptoms.
All that said, having a place in my inner world was incredibly comforting to me even when things were frightening there. For six years now I have not heard voices and I do not have any type of hallucinations. It took me four or five years to stop missing them.
I have the same response of feeling left out of my family member’s “loop”. But when I think about my own experiences, right now for the first time I am realizing that one of the reasons I didn’t talk about them was to protect them and me and that they could not be conveyed in a way that would allow another person to understand their meaning to me.
So, like I often write, pay attention to the real connections you have (i.e. we both like chocolate cake or whatever it is) and what is shared. Work on the relationship with good communication and support because if your son leaves his inner world or loses it, he will be there with you. If your relationship and family life are based in support for every person in the family, including you, he will know this and feel welcome and you will feel better too.
Thank you for your well written words of wisdom and your generosity to share this. As I read your reply I had the strong feeling that your reply was an encounter in my life that was meant to be or would matter to some of our decision making. One thing that interests me is your change in diagnosis. Whenever a new Dr. meets my son they always say that they don’t think he has sz because he is so well spoken and intuitive about his experience as you sound to be also. I do wonder, often, if we are missing an important piece of what is happening. A second thing is what you convey and also what I have heard from others - and my son - regarding how important those relationships are with the voices. Because I love him so - I want to respect that privacy, his feelings, this part of his life that is somewhat foreign and scary to me. For the most part I have balanced that fairly well but your words were very meaningful to me. Even though I don’t understand everything, at times he seems to be in pain, and so much of the advice I have been given I have not followed because I know someday, love will be all we have. I can’t take him somewhere and leave him because he is in pain. I would not take him from his home, bed, family, and pets because he doesn’t meet a random set of standards based on a lot of “we don’t know for sure” or “we don’t know why this works” science. If you would ever be willing to share more of your diagnosis - how you found the right doctor, meds that worked ,etc…I would be interested. Thank you so much for replying. Your words were of comfort and strength to me.