The unknowable likelihood that my husband will have a psychotic relapse
April 24, 2015 11:30 AM Subscribe
How can I get over this constant fear and worry that my husband will have another psychotic episode or turn out to have schizophrenia?
Long, so most relevant sections bolded. You are not my doctor, nor my husband's doctor, and I accept that this is not intended for medical advice, but practical advice instead.
I know this will take some backstory, so bear with me: Last Fall, after a couple months of weird behavior and what I suspected were delusions1, my husband had a full on psychotic break. I took him to the hospital when it became apparent he was hearing voices and having severe paranoid delusions. I guess they got so bad that he just shut down, and when he realized that no one else could here this stuff he really started panicking. After 5 days in inpatient care, he was released back home. He had absolutely full insight that it was all in his head since the first day there, and was just relieved that it was over (for about 24 hours he thought everyone he loved had died, which must have been so horrible). He was given risperidone an atarax (ditched the atarax right away because of excessive sedation) at the time also. The voices continued for a few months, but there were no delusions, and he knew they were self-produced by his subconscious. Even with full insight, they were pretty upsetting to him because they were so critical and mean (he’s always had kind of low self-esteem).
The voices became less frequent and eventually stopped after a couple of months, around January. At this time he didn’t have health insurance (before he got on mine) and was using some hospital free program during the first few weeks out of the hospital, and they wanted to increase his risperidone dosage, but he couldn't handle the increased side effects (severe twitching all the time, but especially when trying to fall asleep, rapidly gaining weight). His current psychiatrist, who he’s only seen a few times, was appalled that the hospital diagnosed him as both schizophrenia and NPD, after they only had a few short conversations with him while he was inpatient during the weekend, and each with a different doctor! There’s no possibility that he has NPD, let me say that outright. He’s incredibly sweet, caring, humble, and empathetic and selfless, so that misdiagnosis kinda discredits the hospital to me (and his current psych is in agreement).
His doctor added Psychotic Disorder NOS to his record, and is unable to say whether it was just drug induced (heavy DXM abuse), combined with intense stress of a toxic, racist work environment, or if it is actually schizophrenia or some organic illness, because there’s nothing weird going on now. If it comes back, it’s probably some kind of organic illness like schizophrenia.
He decided he needed to come off the anti-psychotics, after discussing with me and his doctor. I totally supported him in this, and we both decided he needed to get off it for health reasons and quality of life. The first couple months, when he was on the 3 mg, he gained a lot of weight uncontrollably, our sex life was almost nonexistent because of the ED side effects, it made him sleepy all day, and would occasionally have scary hand tremors. The stuff has a very high risk of diabetes, and combined with the weight gain that was very concerning (my younger cousin has schizophrenia and his meds gave him diabetes within a few years). These drugs have been shown to cause grey matter loss, and decreased life span, and can cause incurable and debilitating movement disorders. All antipsychotics carry these risks, to varying degrees. After he came off, I also realized it had affected his personality, as he now seems so much more “there” than when on the drugs, and is 100% back to the man I married.
Obviously, he could just stay on the stuff forever, just in case, but scould as well have been a onetime occurrence, the side effects seem totally not worth it, One of my worst fears is that he would no longer be the man I married, but a half sedated zombie (like my cousin, who just seems….not there).
The problem is, this whole experience last year really screwed me up. I may even have some kind of PTSD-type symptoms, as now just reading about any psychotic type mental disorder is a surefire trigger, and my own anxiety and heartbeat go skyrocketing and I start obsessing about this stuff. I am seeing a therapist, and am taking seroquel to help me sleep and for anxiety, citalopram for anxiety and depression, klonopin for anxiety flare-ups, and ADHD meds. I am STILL worrying constantly that he will relapse, and be for real diagnosed with schizophrenia (at 30, with no negative symptoms exhibited). The psychosis cost him his job, and after 6 months of unemployment we incurred a good bit of debt. He now has his “dream job”, a bright career, and the thought that he could potentially lose that terrifies me. He would be emotionally devastated. If it happened again it would ruin both our lives. I make nowhere near as much as him and can’t provide for us on my income alone. Even without the potential financial disaster, the problems that could result are largely unknown.
I fully support him getting of the meds, as the negative side effects were pronounced and affected both of us. I am so afraid though. My preexisting hypochondria has spread to being worried about my husband’s health in the same way (I was convinced we both had diabetes and bought one of those meter things to check. Negative). I am ruminating over this constantly, and it’s messing up my job and sanity. Already in therapy, but it just doesn’t seem to be helping for this ONE particular issue. I just need to figure out how to get past this all, but when the chance that your entire future could be erased is constantly looming…I just don’t know how!
I know this is MY problem—a problem in my reaction to the world around me. I am not blaming my husband for getting sick last year. I love him and think he is the most beautiful and fascinating and wonderful person I’ve ever known. I feel like I will always be waiting for the other shoe to drop. There’s that FEAR that it’s going to happen again, even though he’s doing fine now. He’s doing better actually than before this happened! I can’t find statistics as to what percentage of the people who experience a psychosis go on to be diagnosed with schizophrenia. Maybe I shouldn’t even know the answer.
Things that won’t help:
1 I didn't know what to do, didn't know how bad it actually was, and didn't want to risk losing his trust. Also he's very stubborn
Long, so most relevant sections bolded. You are not my doctor, nor my husband's doctor, and I accept that this is not intended for medical advice, but practical advice instead.
I know this will take some backstory, so bear with me: Last Fall, after a couple months of weird behavior and what I suspected were delusions1, my husband had a full on psychotic break. I took him to the hospital when it became apparent he was hearing voices and having severe paranoid delusions. I guess they got so bad that he just shut down, and when he realized that no one else could here this stuff he really started panicking. After 5 days in inpatient care, he was released back home. He had absolutely full insight that it was all in his head since the first day there, and was just relieved that it was over (for about 24 hours he thought everyone he loved had died, which must have been so horrible). He was given risperidone an atarax (ditched the atarax right away because of excessive sedation) at the time also. The voices continued for a few months, but there were no delusions, and he knew they were self-produced by his subconscious. Even with full insight, they were pretty upsetting to him because they were so critical and mean (he’s always had kind of low self-esteem).
The voices became less frequent and eventually stopped after a couple of months, around January. At this time he didn’t have health insurance (before he got on mine) and was using some hospital free program during the first few weeks out of the hospital, and they wanted to increase his risperidone dosage, but he couldn't handle the increased side effects (severe twitching all the time, but especially when trying to fall asleep, rapidly gaining weight). His current psychiatrist, who he’s only seen a few times, was appalled that the hospital diagnosed him as both schizophrenia and NPD, after they only had a few short conversations with him while he was inpatient during the weekend, and each with a different doctor! There’s no possibility that he has NPD, let me say that outright. He’s incredibly sweet, caring, humble, and empathetic and selfless, so that misdiagnosis kinda discredits the hospital to me (and his current psych is in agreement).
His doctor added Psychotic Disorder NOS to his record, and is unable to say whether it was just drug induced (heavy DXM abuse), combined with intense stress of a toxic, racist work environment, or if it is actually schizophrenia or some organic illness, because there’s nothing weird going on now. If it comes back, it’s probably some kind of organic illness like schizophrenia.
He decided he needed to come off the anti-psychotics, after discussing with me and his doctor. I totally supported him in this, and we both decided he needed to get off it for health reasons and quality of life. The first couple months, when he was on the 3 mg, he gained a lot of weight uncontrollably, our sex life was almost nonexistent because of the ED side effects, it made him sleepy all day, and would occasionally have scary hand tremors. The stuff has a very high risk of diabetes, and combined with the weight gain that was very concerning (my younger cousin has schizophrenia and his meds gave him diabetes within a few years). These drugs have been shown to cause grey matter loss, and decreased life span, and can cause incurable and debilitating movement disorders. All antipsychotics carry these risks, to varying degrees. After he came off, I also realized it had affected his personality, as he now seems so much more “there” than when on the drugs, and is 100% back to the man I married.
Obviously, he could just stay on the stuff forever, just in case, but scould as well have been a onetime occurrence, the side effects seem totally not worth it, One of my worst fears is that he would no longer be the man I married, but a half sedated zombie (like my cousin, who just seems….not there).
The problem is, this whole experience last year really screwed me up. I may even have some kind of PTSD-type symptoms, as now just reading about any psychotic type mental disorder is a surefire trigger, and my own anxiety and heartbeat go skyrocketing and I start obsessing about this stuff. I am seeing a therapist, and am taking seroquel to help me sleep and for anxiety, citalopram for anxiety and depression, klonopin for anxiety flare-ups, and ADHD meds. I am STILL worrying constantly that he will relapse, and be for real diagnosed with schizophrenia (at 30, with no negative symptoms exhibited). The psychosis cost him his job, and after 6 months of unemployment we incurred a good bit of debt. He now has his “dream job”, a bright career, and the thought that he could potentially lose that terrifies me. He would be emotionally devastated. If it happened again it would ruin both our lives. I make nowhere near as much as him and can’t provide for us on my income alone. Even without the potential financial disaster, the problems that could result are largely unknown.
I fully support him getting of the meds, as the negative side effects were pronounced and affected both of us. I am so afraid though. My preexisting hypochondria has spread to being worried about my husband’s health in the same way (I was convinced we both had diabetes and bought one of those meter things to check. Negative). I am ruminating over this constantly, and it’s messing up my job and sanity. Already in therapy, but it just doesn’t seem to be helping for this ONE particular issue. I just need to figure out how to get past this all, but when the chance that your entire future could be erased is constantly looming…I just don’t know how!
I know this is MY problem—a problem in my reaction to the world around me. I am not blaming my husband for getting sick last year. I love him and think he is the most beautiful and fascinating and wonderful person I’ve ever known. I feel like I will always be waiting for the other shoe to drop. There’s that FEAR that it’s going to happen again, even though he’s doing fine now. He’s doing better actually than before this happened! I can’t find statistics as to what percentage of the people who experience a psychosis go on to be diagnosed with schizophrenia. Maybe I shouldn’t even know the answer.
Things that won’t help:
- Just accepting things are outside my control doesn’t help. I know it’s true but it makes me feel WORSE.
- Support groups won’t work because generally being reminded of mental health stuff is now majorly triggering and sends me into days of rumination and emotional crappiness. Also I have social anxiety.
- Also, I don’t want to know the worst case scenarios. My brain is very effective and persistent at coming up with those without help.
1 I didn't know what to do, didn't know how bad it actually was, and didn't want to risk losing his trust. Also he's very stubborn
You've got quite a list of things that "won't help." But, you're going to have to extend yourself outside of your comfort zone to deal with this, I think. And, you're going to need to work on your own anxiety and other issues so that you can live a full and healthy life yourself.
But, baby steps. He has a doctor, see if that person can recommend a therapist -- first for you, then for your husband. You have anxiety disorder – that is often covered under health plans for therapy specifically if recommended by a doctor.
Your therapist, your husband, your doctor need to have an escalation plan that you all agree on: "Here's the steps that we take if this comes up again."
I think you have vestigial anxiety about being in a house that is unstable financially and mentally – this is a huge burden. It will take you some time to come back to "normal." Every day should be about prioritizing both you and your husband's mental health. What did I do to take care of my mental health today? What did my husband do to take care of his mental health today? What did I do to support his mental health and stability? Once you are able to make a practice out of that, I think therapy and a relationship agreement (this can be a hard conversation) about how to handle a future breakdown will make you feel a lot better.
posted by amanda at 11:45 AM on April 24, 2015 [7 favorites]
But, baby steps. He has a doctor, see if that person can recommend a therapist -- first for you, then for your husband. You have anxiety disorder – that is often covered under health plans for therapy specifically if recommended by a doctor.
Your therapist, your husband, your doctor need to have an escalation plan that you all agree on: "Here's the steps that we take if this comes up again."
He now has his “dream job”, a bright career, and the thought that he could potentially lose that terrifies me. He would be emotionally devastated. If it happened again it would ruin both our lives. I make nowhere near as much as him and can’t provide for us on my income alone. Even without the potential financial disaster, the problems that could result are largely unknown.You need to take steps to make your life affordable on less income. Do you have your financial house together? It's difficult, I know. Do a google search for the 50/30/20 approach to your finances. It was popularized by Elizabeth Warren in a few books she's written (which are pretty great at making personal finance and goal setting seem reachable).
I think you have vestigial anxiety about being in a house that is unstable financially and mentally – this is a huge burden. It will take you some time to come back to "normal." Every day should be about prioritizing both you and your husband's mental health. What did I do to take care of my mental health today? What did my husband do to take care of his mental health today? What did I do to support his mental health and stability? Once you are able to make a practice out of that, I think therapy and a relationship agreement (this can be a hard conversation) about how to handle a future breakdown will make you feel a lot better.
posted by amanda at 11:45 AM on April 24, 2015 [7 favorites]
DXM can cause psychotic breaks and all of the symptoms you describe without any underlying mental illness. Is your husband clean and sober today? A commitment toward stopping DXM abuse could very likely solve all of these problems. It will bring up a whole lot of other potential fears from you, probably (i.e., what if he starts again?) but I have been in a similar position as yours right now, and it was comforting to me to know that my husband was not unpredictably psychotic, but was in fact just a drug addict in need of recovery. (And he found it, by the way, and has been sober almost 10 years and is a wonderful, mentally healthy partner in all respects.)
posted by something something at 12:02 PM on April 24, 2015 [12 favorites]
posted by something something at 12:02 PM on April 24, 2015 [12 favorites]
There is a lot of your story that resonates with me - different details, same feelings and some similarities in the big picture. If you want to MeMail me, please do.
Short of that, I guess I would say just a few things - yes, I think it is very very possible that you have PTSD. I do. I have for six months, and I feel like I am maybe just in this past month or so starting to get a grip on it, but even then, it's a tenuous grip and everything feels fragile. The fear. Oh god, the fear, and the struggling to get through the day, and the feeling that your partner is actually doing great, but while you held shit together just long enough for him to get his shit together, now you are falling apart? Oh, do I know that dance.
I'm glad you're in therapy. I'm glad you're on meds. I'm glad time is passing, because just *time* will help some of this. But how else are you taking care of yourself? You might need to put some more emphasis on that for a while. You need to figure out some other ways to break up the rumination cycle. Some stuff that's working pretty well for me is:
- Mindfulness meditation, as a formal daily practice and also as something I do in little bits and pieces as my brain tries to run away with me, some awareness of my breathing really helps. This is my best way of keeping the physical symptoms of an anxiety attack from spinning up.
- CBT - mine is sort of a half-assed home-brew CBT cobbled together from books I read on the subject, but I took the bits that worked for me. This is my best tool for rumination and catastrophizing.
- Picking up a new hobby that really required me to focus my thoughts and ideally some physical motions on something new. It's hard to ruminate when you're trying to learn to knit, at least it was for me.
- Forcing some time out of my schedule to do stuff that is just for me. I get massages once a month. I try to pop into a knitting group here and there. I go for coffee with a friend. I don't really have time for it, and part of me is going "oh god, what if RIGHT NOW everything is spinning out of control in this half hour I am not on top of it", but really, I can't afford NOT to be kind to myself and to make room in my life for things that aren't fear and mental illness.
- Exercise. I loathe exercise, but when I am walking really fast, it crowds out a lot of stuff in my head.
- Talking as openly as I can with the person in my life who had a bad mental breakdown about what happened, how that person is processing it, how I am processing it. It sucks, and there's a lot I don't say because I just can't for a variety of reasons, but to whatever extent you can. Keeping that stuff locked up in your head gives it power, and sharing it can strengthen your relationship as you go through this crappy time.
- Do what you can to build a support network for yourself, encourage him to do the same
The specific things you find work for you might be different, but you need to find something that calms you, and something that distracts you when just plain calming isn't working so well. Long term, you may need to also think about things like finding a way to rely less on his income, but right now you sound terrified and getting yourself back to feeling something in the neighborhood of normal should be first priority, then you'll be in a much better place to figure out what sort of long term changes you might need to make, if any.
I'm sorry you're going through this. I hope you find relief soon. I wish you luck.
posted by Stacey at 12:08 PM on April 24, 2015 [5 favorites]
Short of that, I guess I would say just a few things - yes, I think it is very very possible that you have PTSD. I do. I have for six months, and I feel like I am maybe just in this past month or so starting to get a grip on it, but even then, it's a tenuous grip and everything feels fragile. The fear. Oh god, the fear, and the struggling to get through the day, and the feeling that your partner is actually doing great, but while you held shit together just long enough for him to get his shit together, now you are falling apart? Oh, do I know that dance.
I'm glad you're in therapy. I'm glad you're on meds. I'm glad time is passing, because just *time* will help some of this. But how else are you taking care of yourself? You might need to put some more emphasis on that for a while. You need to figure out some other ways to break up the rumination cycle. Some stuff that's working pretty well for me is:
- Mindfulness meditation, as a formal daily practice and also as something I do in little bits and pieces as my brain tries to run away with me, some awareness of my breathing really helps. This is my best way of keeping the physical symptoms of an anxiety attack from spinning up.
- CBT - mine is sort of a half-assed home-brew CBT cobbled together from books I read on the subject, but I took the bits that worked for me. This is my best tool for rumination and catastrophizing.
- Picking up a new hobby that really required me to focus my thoughts and ideally some physical motions on something new. It's hard to ruminate when you're trying to learn to knit, at least it was for me.
- Forcing some time out of my schedule to do stuff that is just for me. I get massages once a month. I try to pop into a knitting group here and there. I go for coffee with a friend. I don't really have time for it, and part of me is going "oh god, what if RIGHT NOW everything is spinning out of control in this half hour I am not on top of it", but really, I can't afford NOT to be kind to myself and to make room in my life for things that aren't fear and mental illness.
- Exercise. I loathe exercise, but when I am walking really fast, it crowds out a lot of stuff in my head.
- Talking as openly as I can with the person in my life who had a bad mental breakdown about what happened, how that person is processing it, how I am processing it. It sucks, and there's a lot I don't say because I just can't for a variety of reasons, but to whatever extent you can. Keeping that stuff locked up in your head gives it power, and sharing it can strengthen your relationship as you go through this crappy time.
- Do what you can to build a support network for yourself, encourage him to do the same
The specific things you find work for you might be different, but you need to find something that calms you, and something that distracts you when just plain calming isn't working so well. Long term, you may need to also think about things like finding a way to rely less on his income, but right now you sound terrified and getting yourself back to feeling something in the neighborhood of normal should be first priority, then you'll be in a much better place to figure out what sort of long term changes you might need to make, if any.
I'm sorry you're going through this. I hope you find relief soon. I wish you luck.
posted by Stacey at 12:08 PM on April 24, 2015 [5 favorites]
I'm also confused about the substance abuse problem you mentioned. Do you take recreational drugs or use alcohol, too? Even a little?
You're also in a lot of meds yourself. I don't understand how that works in terms of your moods and perceptions.
Maybe you should have a second or third opinion concerning any perscription or non-perscription substances you are taking and possible adverse interactions? Ditto a second or third opinion concerning your husband and any substances he uses or abuses?
I'm so sorry all of this is happening. I appreciate all of the details you provided. Maybe it's all OK, all of the meds and such. You should make triple sure, though, just to be safe.
posted by jbenben at 12:17 PM on April 24, 2015 [8 favorites]
You're also in a lot of meds yourself. I don't understand how that works in terms of your moods and perceptions.
Maybe you should have a second or third opinion concerning any perscription or non-perscription substances you are taking and possible adverse interactions? Ditto a second or third opinion concerning your husband and any substances he uses or abuses?
I'm so sorry all of this is happening. I appreciate all of the details you provided. Maybe it's all OK, all of the meds and such. You should make triple sure, though, just to be safe.
posted by jbenben at 12:17 PM on April 24, 2015 [8 favorites]
If it makes you feel any better about the chances of it being purely drug-induced psychosis (assuming he's off the robo), anecdotally from both experience and association, DXM can definitely do that to you.
Did the doctors know about the robo tripping? If so, why was that not their first guess?
posted by cmoj at 12:39 PM on April 24, 2015 [6 favorites]
Did the doctors know about the robo tripping? If so, why was that not their first guess?
posted by cmoj at 12:39 PM on April 24, 2015 [6 favorites]
Obviously I'm no expert, and your husband's current psychiatrist can't say what's happened one way or the other, obviously none of us can, but as far as I understand things, a single psychotic episode at 30 is not typical of the etiology of schizophrenia, which usually shows up in early adulthood (early 20s). The first of these seems very possible:
His doctor added Psychotic Disorder NOS to his record, and is unable to say whether it was just drug induced (heavy DXM abuse), combined with intense stress of a toxic, racist work environment, or if it is actually schizophrenia or some organic illness, because there’s nothing weird going on now. If it comes back, it’s probably some kind of organic illness like schizophrenia.
And, this doctor sounds exceptionally cautious and grounded, and I'd feel encouraged by his response to the way the previous diagnoses were established. Do you feel like your husband's in good hands now?
Most agree now that mental illnesses arise out of a combination of some predisposing vulnerabilities, and life stressors/events. I think amanda is bang on in suggesting you build your life in a way that supports health, work to minimize exposure to stressors, and find and trust a solid team of professionals (like your husband's current doctor, who sounds fantastic).
posted by cotton dress sock at 1:19 PM on April 24, 2015 [1 favorite]
His doctor added Psychotic Disorder NOS to his record, and is unable to say whether it was just drug induced (heavy DXM abuse), combined with intense stress of a toxic, racist work environment, or if it is actually schizophrenia or some organic illness, because there’s nothing weird going on now. If it comes back, it’s probably some kind of organic illness like schizophrenia.
And, this doctor sounds exceptionally cautious and grounded, and I'd feel encouraged by his response to the way the previous diagnoses were established. Do you feel like your husband's in good hands now?
Most agree now that mental illnesses arise out of a combination of some predisposing vulnerabilities, and life stressors/events. I think amanda is bang on in suggesting you build your life in a way that supports health, work to minimize exposure to stressors, and find and trust a solid team of professionals (like your husband's current doctor, who sounds fantastic).
posted by cotton dress sock at 1:19 PM on April 24, 2015 [1 favorite]
If it were me (and I think I'd probably be reacting similarly), I'd try to come up with whatever contingency plans I can come up with in the event that the worst happened again. Is there any way you can make more money? Get some things transferred into your name only in the event that he's unable to take care of them? What can you take care of ahead of time in good times to make it easier if life goes to hell?
posted by jenfullmoon at 2:16 PM on April 24, 2015 [3 favorites]
posted by jenfullmoon at 2:16 PM on April 24, 2015 [3 favorites]
There are a lot of words here. There's a lot of anxiety. There's a lot of obsessional thinking. And you're on ADD meds. Soooo--this is a thing that is known about stimulants, right? Some people don't tolerate them well, and verbose + anxious + obsessive as a combination when you mention already having an anxiety problem suggests to me that maybe stimulants are a thing you need to not be taking. Discuss this with your doctor, but you just wrote over 1200 words that can be boiled down to "you're excessively worried about your husband's health, you have anxiety problems and ADD, you're in therapy but it's not helping, what do you do". Not that anybody expects you to be that concise, but this is generally pretty typical of how people are when they're taking more stimulants than they should be.
That said, in general, the situation with your husband matters not at all. You know that, don't you? You have an anxiety problem. Your current treatment for your anxiety problem involves three different medications and therapy and this is still happening. As a general thing, your anxiety treatment is not working, and you need to go straight to your doctor and your therapist and make sure that they are 100% aware of that, and see what the next steps are. If they don't have next steps, you need a new doctor and/or therapist. "I already have a doctor" is all well and good, but if your doctor isn't actually providing you with an effective treatment for your problem, it might be time for a different doctor. Imagine if it was "I have diabetes and my blood sugar's totally out of control. I already have a doctor." You'd see a different doctor, right, at some point? No different, here.
posted by Sequence at 2:45 PM on April 24, 2015 [11 favorites]
That said, in general, the situation with your husband matters not at all. You know that, don't you? You have an anxiety problem. Your current treatment for your anxiety problem involves three different medications and therapy and this is still happening. As a general thing, your anxiety treatment is not working, and you need to go straight to your doctor and your therapist and make sure that they are 100% aware of that, and see what the next steps are. If they don't have next steps, you need a new doctor and/or therapist. "I already have a doctor" is all well and good, but if your doctor isn't actually providing you with an effective treatment for your problem, it might be time for a different doctor. Imagine if it was "I have diabetes and my blood sugar's totally out of control. I already have a doctor." You'd see a different doctor, right, at some point? No different, here.
posted by Sequence at 2:45 PM on April 24, 2015 [11 favorites]
I'm not a doctor.
NMDA-receptor antagonists - the class of drugs which include DXM, ketamine and PCP - are well known for being closely linked with psychosis. That an episode of psychosis would occur directly after a period of heavy DXM abuse would not be surprising, and DXM-induced psychotic episodes are documented in research journals. However, there is not a large body of DXM psychosis-related research, likely due to its relative obscurity as a drug of abuse and the relative difficulty of overdose with commercially-available DXM compared with other substances.
However, there has been much research into PCP and ketamine-related psychosis, as psychotic outbreaks brought on by PCP and ketamine abuse had become fairly common at the height of the popularity of those drugs in the 1970s. While metabolism of DXM may be different, all three drugs have the same primary mechanism of action, and so that research should be of interest in assessing your husband's condition. The National Institute of Health themselves say that DXM can produce dissociative effects similar to PCP and ketamine.
The psychotic state that PCP induces is generally considered to be indistinguishable from schizophrenia. Prolonged psychosis tends to be seen in heavier users of the drug, and withdrawal results in depression, anxiety, and severe psychiatric disturbances.
But there's good news. While there is no doubt that abuse of dissociative drugs can and will create a state that is indistinguishable from schizophrenia, there is no evidence that there is permanent brain damage, no evidence that the substance-induced psychotic state is permanent, nor is there evidence that, in absence of the drug, the psychotic state will reoccur. When studies talk about long term effects, they're talking about a year, not a lifetime.
Your current doctor's diagnosis - that your husband experienced a psychotic disorder that could be either substance-induced or organic - seems completely reasonable and cautious. But if this disorder occurred concurrently with the DXM abuse, the odds would seem reasonable that the DXM was the causative factor.
Now, here's the thing. Substance-induced psychosis is common enough that your husband likely was given a drug test at the hospital upon admission. However, the hospital was unlikely to test for DXM unless you asked them to or emphasized his heavy use of DXM, and, as above, the psychosis that dissociative drugs can produce is virtually indistinguishable from schizophrenia, even if it is not a permanent state. As such, an observational misdiagnosis of schizophrenia would seem likely on the part of the doctors at the hospital.
Given what you told us, it sounds like you can take the original diagnosis of schizophrenia with a grain of salt, and as long as your husband is not continuing to abuse DXM or other drugs - and alcohol and cannabis absolutely can cause a psychotic break, so he should really do his best to stay clean - it sounds like this is likely not a permanent condition and that there's a very good chance he does not need to stay on the antipsychotic drugs long term.
I hope that helps.
Now, let's talk about your drugs. You're taking a hefty cocktail, and we don't even know what ADHD drugs you're on. Insomnia and anxiety of reasonable intensity are very common side effects of virtually all ADHD medications, and you may be at a point where the seroquel and the klonopin just can't counter that side effect. If you're reasonably high functioning without the ADHD meds, you may want to talk to your doctor about potentially sacrificing some focus to lessen the anxiety.
posted by I EAT TAPAS at 3:11 PM on April 24, 2015 [18 favorites]
NMDA-receptor antagonists - the class of drugs which include DXM, ketamine and PCP - are well known for being closely linked with psychosis. That an episode of psychosis would occur directly after a period of heavy DXM abuse would not be surprising, and DXM-induced psychotic episodes are documented in research journals. However, there is not a large body of DXM psychosis-related research, likely due to its relative obscurity as a drug of abuse and the relative difficulty of overdose with commercially-available DXM compared with other substances.
However, there has been much research into PCP and ketamine-related psychosis, as psychotic outbreaks brought on by PCP and ketamine abuse had become fairly common at the height of the popularity of those drugs in the 1970s. While metabolism of DXM may be different, all three drugs have the same primary mechanism of action, and so that research should be of interest in assessing your husband's condition. The National Institute of Health themselves say that DXM can produce dissociative effects similar to PCP and ketamine.
The psychotic state that PCP induces is generally considered to be indistinguishable from schizophrenia. Prolonged psychosis tends to be seen in heavier users of the drug, and withdrawal results in depression, anxiety, and severe psychiatric disturbances.
But there's good news. While there is no doubt that abuse of dissociative drugs can and will create a state that is indistinguishable from schizophrenia, there is no evidence that there is permanent brain damage, no evidence that the substance-induced psychotic state is permanent, nor is there evidence that, in absence of the drug, the psychotic state will reoccur. When studies talk about long term effects, they're talking about a year, not a lifetime.
Your current doctor's diagnosis - that your husband experienced a psychotic disorder that could be either substance-induced or organic - seems completely reasonable and cautious. But if this disorder occurred concurrently with the DXM abuse, the odds would seem reasonable that the DXM was the causative factor.
Now, here's the thing. Substance-induced psychosis is common enough that your husband likely was given a drug test at the hospital upon admission. However, the hospital was unlikely to test for DXM unless you asked them to or emphasized his heavy use of DXM, and, as above, the psychosis that dissociative drugs can produce is virtually indistinguishable from schizophrenia, even if it is not a permanent state. As such, an observational misdiagnosis of schizophrenia would seem likely on the part of the doctors at the hospital.
Given what you told us, it sounds like you can take the original diagnosis of schizophrenia with a grain of salt, and as long as your husband is not continuing to abuse DXM or other drugs - and alcohol and cannabis absolutely can cause a psychotic break, so he should really do his best to stay clean - it sounds like this is likely not a permanent condition and that there's a very good chance he does not need to stay on the antipsychotic drugs long term.
I hope that helps.
Now, let's talk about your drugs. You're taking a hefty cocktail, and we don't even know what ADHD drugs you're on. Insomnia and anxiety of reasonable intensity are very common side effects of virtually all ADHD medications, and you may be at a point where the seroquel and the klonopin just can't counter that side effect. If you're reasonably high functioning without the ADHD meds, you may want to talk to your doctor about potentially sacrificing some focus to lessen the anxiety.
posted by I EAT TAPAS at 3:11 PM on April 24, 2015 [18 favorites]
Last Fall, after a couple months of weird behavior and what I suspected were delusions1
1 I didn't know what to do, didn't know how bad it actually was, and didn't want to risk losing his trust. Also he's very stubborn
•Just accepting things are outside my control doesn’t help. I know it’s true but it makes me feel WORSE.
My ex is also amazingly stubborn. When he came down with chicken pox in his early thirties, I told him he needed to see a doctor. He blew me off. I called my sister. She told him the same thing. He blew her off. I called a nurse's hotline and got a nurse on the line. She told him to see a doctor promptly. He blew that off too. When I finally insisted he see a doctor five days later rather than die on my couch while under my care, the doctor gave him better drugs than the OTC stuff I had been able to supply him with and he felt so much better and also the doctor told him he would have suffered a helluva lot less had he come in two days earlier when me, my sister and a nurse were insisting he promptly see a doctor. His response: "No one told me...!!!" His adamant refusal to listen to me and his rewriting of history where he still refuses to acknowledge that his life was ever in danger is part of why we are divorced.
So I will suggest that the reason you are so freaked out is because of an imbalance of power in your marriage. The piece you have no control over but should have some control over has to do with your relationship to your husband. If he had listened to you sooner, this wouldn't have gotten so bad. Had he gotten treatment earlier, he might not have lost his job, etc. That piece of it is probably not about his medical crisis. It is probably about the relationship dynamic.
I suggest you find a way to start exercising more power within your marriage. Let him know that given this medical history, if you have concerns, he is going to take you seriously and act on them. You are not going to again stand idly by and watch his life go into the shitter and let him lose his job because he is stubborn and pigheaded and doesn't want to listen. This is not negotiable.
If he won't agree to that much, I will suggest you seriously consider a legal separation. That doesn't necessarily mean you will end up divorced. It can give you some breathing room to work on your issues and some breathing room to renegotiate the relationship.
I will add that if my husband had still refused to see a doctor when I finally insisted on it, I would have called 911. If your husband again becomes clearly irrational, you don't need him to agree to see a doctor. If he blows you off, you can call 911, advise them of his medical history and that he doesn't seem rational and isn't cooperating in seeking care. When someone is clearly not rational, the authorities have some latitude to intercede and administer care, even if the person doesn't want it.
So even if your husband is not cooperative, it is possible for you to exercise power. You do not have to stand idly by just because he is stubborn and pigheaded. Just realizing that you aren't helpless and it doesn't depend on the cooperation of an irrational person can do wonders to help you breathe easier and sleep better.
posted by Michele in California at 3:19 PM on April 24, 2015 [11 favorites]
1 I didn't know what to do, didn't know how bad it actually was, and didn't want to risk losing his trust. Also he's very stubborn
•Just accepting things are outside my control doesn’t help. I know it’s true but it makes me feel WORSE.
My ex is also amazingly stubborn. When he came down with chicken pox in his early thirties, I told him he needed to see a doctor. He blew me off. I called my sister. She told him the same thing. He blew her off. I called a nurse's hotline and got a nurse on the line. She told him to see a doctor promptly. He blew that off too. When I finally insisted he see a doctor five days later rather than die on my couch while under my care, the doctor gave him better drugs than the OTC stuff I had been able to supply him with and he felt so much better and also the doctor told him he would have suffered a helluva lot less had he come in two days earlier when me, my sister and a nurse were insisting he promptly see a doctor. His response: "No one told me...!!!" His adamant refusal to listen to me and his rewriting of history where he still refuses to acknowledge that his life was ever in danger is part of why we are divorced.
So I will suggest that the reason you are so freaked out is because of an imbalance of power in your marriage. The piece you have no control over but should have some control over has to do with your relationship to your husband. If he had listened to you sooner, this wouldn't have gotten so bad. Had he gotten treatment earlier, he might not have lost his job, etc. That piece of it is probably not about his medical crisis. It is probably about the relationship dynamic.
I suggest you find a way to start exercising more power within your marriage. Let him know that given this medical history, if you have concerns, he is going to take you seriously and act on them. You are not going to again stand idly by and watch his life go into the shitter and let him lose his job because he is stubborn and pigheaded and doesn't want to listen. This is not negotiable.
If he won't agree to that much, I will suggest you seriously consider a legal separation. That doesn't necessarily mean you will end up divorced. It can give you some breathing room to work on your issues and some breathing room to renegotiate the relationship.
I will add that if my husband had still refused to see a doctor when I finally insisted on it, I would have called 911. If your husband again becomes clearly irrational, you don't need him to agree to see a doctor. If he blows you off, you can call 911, advise them of his medical history and that he doesn't seem rational and isn't cooperating in seeking care. When someone is clearly not rational, the authorities have some latitude to intercede and administer care, even if the person doesn't want it.
So even if your husband is not cooperative, it is possible for you to exercise power. You do not have to stand idly by just because he is stubborn and pigheaded. Just realizing that you aren't helpless and it doesn't depend on the cooperation of an irrational person can do wonders to help you breathe easier and sleep better.
posted by Michele in California at 3:19 PM on April 24, 2015 [11 favorites]
I don't think it's possible to say enough that you, your husband and his doctor need a plan in place in case it happens again, including the possibility that your husband doesn't cooperate. This seems to me to be a clear hope for the best/plan for the worst situation.
posted by mchorn at 3:36 PM on April 24, 2015 [2 favorites]
posted by mchorn at 3:36 PM on April 24, 2015 [2 favorites]
I just popped into second the comment above that questioned if some of your difficulty in processing this may be partly with the ADHD meds. Stimulant medications tend to make sticky thoughts and actions more sticky.
posted by teamnap at 3:58 PM on April 24, 2015 [1 favorite]
posted by teamnap at 3:58 PM on April 24, 2015 [1 favorite]
I don't have anything super long form to add, but just wanted to third/nth that i've seen DXM cause people who were maybe a bit close to the edge of not-ok go temporarily full on psychotic.
These were people who probably shouldn't have been abusing drugs in general for that reason, but were drawn to it because... people like that tend to be.
If he was already on the edge from and while abusing DXM then had this break, it may very well be something related to that which really wont happen again.
I've known people who were otherwise pretty normal with the exception of a few breaks using drugs like that. It happens.
posted by emptythought at 4:09 PM on April 24, 2015
These were people who probably shouldn't have been abusing drugs in general for that reason, but were drawn to it because... people like that tend to be.
If he was already on the edge from and while abusing DXM then had this break, it may very well be something related to that which really wont happen again.
I've known people who were otherwise pretty normal with the exception of a few breaks using drugs like that. It happens.
posted by emptythought at 4:09 PM on April 24, 2015
It may never happen again.
Reassure yourself by coming up, together, with a care plan for what you will do if you are under a lot of stress, and what to do if one or both of you suspect he is having another episode. Write it down. Sign it!
He needs to have something that he knows he planned and thought about when he was definitely thinking clearly.
Things like: if he goes without sleep for a night, he will take a sleeping pill (sleep deprivation is usually fastest way to repeat an otherwise one off episode of psychosis). If you are concerned and he isn't, what will he do? Something like: Make an urgent appointment with a trusted professional, like this new psych appears to be (sounds great BTW, that helps so much), and track sleeping hours, or whatever symptoms he's had.
Do you have a "break glass in case of emergency" stash of a sleeping pill, and an antipsychotic? Make one. Define what an emergency would be.
Write the script of calling work to take time off because he is sick, and then getting the Drs note (no details required!).
There is no reason he would have to lose his job again, because he is either not going to have an episode again, or you guys are going to follow the plan you write down, and nip it in the bud quickly enough that that won't be a problem, and he won't have to be hospitalised.
This is really stressful, congratulations on getting through a horrible event for both of you.
posted by Elysum at 4:59 PM on April 24, 2015 [6 favorites]
Reassure yourself by coming up, together, with a care plan for what you will do if you are under a lot of stress, and what to do if one or both of you suspect he is having another episode. Write it down. Sign it!
He needs to have something that he knows he planned and thought about when he was definitely thinking clearly.
Things like: if he goes without sleep for a night, he will take a sleeping pill (sleep deprivation is usually fastest way to repeat an otherwise one off episode of psychosis). If you are concerned and he isn't, what will he do? Something like: Make an urgent appointment with a trusted professional, like this new psych appears to be (sounds great BTW, that helps so much), and track sleeping hours, or whatever symptoms he's had.
Do you have a "break glass in case of emergency" stash of a sleeping pill, and an antipsychotic? Make one. Define what an emergency would be.
Write the script of calling work to take time off because he is sick, and then getting the Drs note (no details required!).
There is no reason he would have to lose his job again, because he is either not going to have an episode again, or you guys are going to follow the plan you write down, and nip it in the bud quickly enough that that won't be a problem, and he won't have to be hospitalised.
This is really stressful, congratulations on getting through a horrible event for both of you.
posted by Elysum at 4:59 PM on April 24, 2015 [6 favorites]
Mod note: From the OP:
I am not able to make any additional income. I make more than is standard for my field and there's nowhere else to go in my company. I plan on quitting eventually to do freelance also. My husband is an engineer in a specialized industry and makes far more than I ever will. We do manage our finances well.posted by restless_nomad (staff) at 5:01 PM on April 24, 2015
He did have an incident with taking dxm again but has now stopped after realizing how stupid of an idea that was (this caused the only fight we've ever had). He did tell the hospital staff that he'd been taking psychedelics. He's a regular drinker but not problematically so. I like beer with dinner but generally hate anything stronger and don't even remember the last time I was tipsy.
As far as my meds... My anxiety is much more on control than a year ago. The days on which I obsessively ruminate and freak out are much fewer, and I no longer experience constant background anxiety like I used to.
The adderall is probably a necessity, otherwise I'd have lost my job long ago. Even with the meds it's a struggle to be productive. I'm practically useless without it. I don't think I take enough to contribute to my anxiety as I can generally take a nap after taking it, for instance.
I am just verbose.
This has been on my mind so much lately because he's come off his meds and I guess this is the "moment of truth" so to speak, except it's not a moment, more like months to years.
BTW you are worried because you have reason to be worried eg he has already taken an action that could have set off another episode, so it is a legitimate worry that he may take some similarly risky action in future.
So, plan for it. Make sure you have a plan for if he has taken drugs, or not slept, and is acting erratic.
If he is an engineer, surely he can come up with a sensible plan, down to agreeing that you can make a drs appointment and call in sick for him, or whatever.
Make sure you feel comfortable with the plan while he is in a state to understand your worries, and come up with a good plan himself. If he is erratic and disagrees with his own plan, well, that will probably be a sign he is having an episode, but at least you will have the relief of knowing what to do, who to call, and that you are doing exactly what he would have wanted, if he was thinking clearly. This can take a lot of stress out of it.
posted by Elysum at 5:13 PM on April 24, 2015 [5 favorites]
So, plan for it. Make sure you have a plan for if he has taken drugs, or not slept, and is acting erratic.
If he is an engineer, surely he can come up with a sensible plan, down to agreeing that you can make a drs appointment and call in sick for him, or whatever.
Make sure you feel comfortable with the plan while he is in a state to understand your worries, and come up with a good plan himself. If he is erratic and disagrees with his own plan, well, that will probably be a sign he is having an episode, but at least you will have the relief of knowing what to do, who to call, and that you are doing exactly what he would have wanted, if he was thinking clearly. This can take a lot of stress out of it.
posted by Elysum at 5:13 PM on April 24, 2015 [5 favorites]
You mention he works in a racist environment which makes me want to add, if he is a person of colour you may want to make a plan to call paramedics rather than the police if anything happens again. Because police officers dealing with men of colour is bad enough without adding unpredictable behaviour into the mix.
posted by pseudostrabismus at 5:20 PM on April 24, 2015 [7 favorites]
posted by pseudostrabismus at 5:20 PM on April 24, 2015 [7 favorites]
I am so truly sorry you are in this situation. Who is taking care of you? You need support, you need help. I'm a total stranger and my heart just breaks at this awful situation. You need help, you need care, please think of yourself. You shouldn't have to deal with this on your own. All the feelings you're having are what anybody would feel in your situation.
You love him, and you're so loyal and loving and that's what makes me afraid for you, frankly. This is not your problem, please for the love of god, stop trying to sacrifice your well being for him. I know what it's like to love someone with all your heart and think that means it's your job to take care of them and stick by them forever. But you need help and support now. You need respite. You're suffering and it's obvious.
Also, I'm afraid for your safety, frankly. This just is t a situation you should be managing on your own. Please, please call friends, call family, have someone there for you.
Of course you're feeling scared and anxious and afraid--- anyone in your shoes would! Stop judging yourself. And please reach out to family and friends for immediate assistance, someone that can be around you while you're around him, no matter how sweet, caring, non volatile you want to believe he is in his heart of hearts.
posted by discopolo at 7:51 PM on April 24, 2015 [3 favorites]
You love him, and you're so loyal and loving and that's what makes me afraid for you, frankly. This is not your problem, please for the love of god, stop trying to sacrifice your well being for him. I know what it's like to love someone with all your heart and think that means it's your job to take care of them and stick by them forever. But you need help and support now. You need respite. You're suffering and it's obvious.
Also, I'm afraid for your safety, frankly. This just is t a situation you should be managing on your own. Please, please call friends, call family, have someone there for you.
Of course you're feeling scared and anxious and afraid--- anyone in your shoes would! Stop judging yourself. And please reach out to family and friends for immediate assistance, someone that can be around you while you're around him, no matter how sweet, caring, non volatile you want to believe he is in his heart of hearts.
posted by discopolo at 7:51 PM on April 24, 2015 [3 favorites]
Both of you need support networks, preferable ones that overlap. You need a mix of deep close friends and casual acquaintances, people who know all the truth of what's happening and people who don't know the details. Have people you can be just hang out with and not be "X with the schizophrenic husband", and other people you can cry and worry and know they won't repeat what you say. Write out lists of people you know - family, close old friends, close new friends, work friends, acquaintances you'd like to be friends, social friends, etc - and make a project of getting in touch with them and seeing them more often for coffee, lunches, dinners, activities and so on.
In a practical sense, giving your friendship generously now will get you out of focussing on your own problems, and indirectly build up social capital that you can draw on when/if hard times come again. In the less practical sense, focussing on being a good friend as opposed to a good wife will help you see yourself as a more complete person, to be a more complete person and make you healthier and happier.
posted by dorothyisunderwood at 11:26 PM on April 24, 2015 [1 favorite]
In a practical sense, giving your friendship generously now will get you out of focussing on your own problems, and indirectly build up social capital that you can draw on when/if hard times come again. In the less practical sense, focussing on being a good friend as opposed to a good wife will help you see yourself as a more complete person, to be a more complete person and make you healthier and happier.
posted by dorothyisunderwood at 11:26 PM on April 24, 2015 [1 favorite]
The psychosis cost him his job, and after 6 months of unemployment we incurred a good bit of debt. He now has his “dream job”, a bright career, and the thought that he could potentially lose that terrifies me. ... I make nowhere near as much as him and can’t provide for us on my income alone. Even without the potential financial disaster, the problems that could result are largely unknown.
I have dealt with tons of medical crap and psychological crap and personal crap. It is much, much, much less stressful and intimidating and scary when it doesn't also come with potential financial disaster attached as one of the consequences.
One of the things I have personally experienced and read a lot about is that men very often spend money in a way that is psychologically comfortable for THEM as the primary breadwinner, commensurate with their current paycheck. Since your husband cannot be reasonably confident that he can keep making the money he makes now -- since he does have this medical history and his career could take another big hit suddenly and unexpectedly -- you and he really need to sit down and plan your lives such that if he does have another episode, it is not financial disaster for both of you. Pay off the debts that mounted up while he was unemployed and also create a financial cushion and make any other changes necessary such that potential financial disaster is not one of your big worries forever. If the debts get paid off such that your income (plus savings) would be adequate (at least for a while) if he had another major melt down, I think you would find this much easier to cope with emotionally and psychologically.
I do not appear to be anxiety-prone. But it makes me absolutely nuts with worry to know that if something goes wrong, on top of (BIG PROBLEM) I ALSO may not be able to eat because of it. I can deal with (BIG PROBLEM) if I know I will keep eating and the problem per se won't completely derail my life in multiple other ways. But knowing that it has all these other knock-off effects really does a number on me. So I don't think you are overreacting. I think you would have to be crazy to not be worried in the face of this.
So deal with getting that piece under control as much as humanly possible. Do everything you can to arrange your lives such that you aren't so dependent on him making the kind of income he currently makes. Read websites that talk about planning for early retirement and read books like "How to survive without a salary" and start implementing a plan to address this piece of it. That should start lowering your anxiety levels.
posted by Michele in California at 10:51 AM on April 25, 2015
I have dealt with tons of medical crap and psychological crap and personal crap. It is much, much, much less stressful and intimidating and scary when it doesn't also come with potential financial disaster attached as one of the consequences.
One of the things I have personally experienced and read a lot about is that men very often spend money in a way that is psychologically comfortable for THEM as the primary breadwinner, commensurate with their current paycheck. Since your husband cannot be reasonably confident that he can keep making the money he makes now -- since he does have this medical history and his career could take another big hit suddenly and unexpectedly -- you and he really need to sit down and plan your lives such that if he does have another episode, it is not financial disaster for both of you. Pay off the debts that mounted up while he was unemployed and also create a financial cushion and make any other changes necessary such that potential financial disaster is not one of your big worries forever. If the debts get paid off such that your income (plus savings) would be adequate (at least for a while) if he had another major melt down, I think you would find this much easier to cope with emotionally and psychologically.
I do not appear to be anxiety-prone. But it makes me absolutely nuts with worry to know that if something goes wrong, on top of (BIG PROBLEM) I ALSO may not be able to eat because of it. I can deal with (BIG PROBLEM) if I know I will keep eating and the problem per se won't completely derail my life in multiple other ways. But knowing that it has all these other knock-off effects really does a number on me. So I don't think you are overreacting. I think you would have to be crazy to not be worried in the face of this.
So deal with getting that piece under control as much as humanly possible. Do everything you can to arrange your lives such that you aren't so dependent on him making the kind of income he currently makes. Read websites that talk about planning for early retirement and read books like "How to survive without a salary" and start implementing a plan to address this piece of it. That should start lowering your anxiety levels.
posted by Michele in California at 10:51 AM on April 25, 2015
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posted by asockpuppet at 11:38 AM on April 24, 2015 [24 favorites]