[kwack30]

I want to but I don't know where to go from here. I have a slew of mental disorders mostly stemming from anxiety (PTSD, PPD, Depression, OCD, et.) All are being treated and I am doing well but the issue that I am struggling with now is my sister's illness; schizoaffective disorder.

I have so many questions and no one to turn to. I understand there are no universal explanations to explain mental illnesses but I am completely lost.

My sister was in-patient for approximately 3-4 weeks. I saw her struggle in ways that would break another person. She is home now and heavily medicated on anti-psychotics and mood stabilizers which are making her sick in a completely different way. She is spending 17+ hours in bed a day. She can't move, she's achy, has headaches, lethargic, spasms, and is all together miserable. I call her every night and she cries and begs me to help her. Its breaking my heart.

I hate seeing her suffer but I don't know how to help her anymore. I am heavily involved in her treatments, speak with her therapist weekly, see her as often as I can (lives 1 1/2 away), I am taking care of her 7 year-old daughter, etc... but I can't alleviate her suffering.

I need to know where to go from here. I know it sounds selfish but I need to know that others are going through this or have gone through this. With my own mental health issues I know everything is magnified but I don't know how to help my sister anymore. I am NOT giving up but I need help too.

[costello]

Hi kwack: I'm sorry to hear you're suffering so much. I know it's easier said than done, but you need to take care of yourself or you'll be no good to anyone.

My first reaction to your post is that your sister is seriously overmedicated. My son was sleeping 11 hours a day, and his pdoc is gradually lowering the dosage of his medication. No one should be sleeping 17+ hours a day. What kind of life is that? It would help with some of the side effects if the dosage were lowered too.

My second thought: does your sister have a case manager? That would help get some of the burden off you.

Finally, can you move her closer to you? I know that might be a hassle, because you'd have to move her services. But it would make it easier for you, and it would allow your sister and your niece to have more of a relationship.

Talk care of yourself.

[my3sns]

hugs to you... im really concerned for you and your sister!!! it certainly sounds like your sis could be overmedicated ( but im not a doctor ) since you arepretty involved in sis's care , hopefully you can sk or have already asked the doc if something could be done..write down all her "symptoms or side effects" and show the doc what you are dealing with. but first and foremost take care of you,,if not for yourself , but for sis and neice

[FireBird]

I am sorry that is going on but I have that terrible side effect of sleeping all day when I have to take the morning dose of Loxapine. Luckily for now my pdoc said I can take it at night but when I took the morning dose I slept an additional 3-4 hours a day and also slept 12-14 hours a night. That is up to 18 hours a day! Your sister is not alone. All I would do is sleep. My pdoc did a blood test to see if the night dose is OK but if it is out of my bloodstream I won't take it in the morning like it was before. I am not going to sleep 18 hours a day. This means your sister is overmedicated. This can also be one of the nasty side effects of the pill.

[dillpickle1983]

I was diagnosed as schizoaffective, and they prescribed me Thorazine, 100mg, take at night before bed. Well to say the least, it knocked me out. I slept for 20hrs the first time I took it. I missed a whole day, it sucked. No call / no showed for work, and well that didnt go over well. Anyways, I was overmedicated, and the doctor lowered the dose to 50mg and all was well then. Thru therapy and some brute determination I am dealing with my illnesses without medication.. But that is besides the point. Her PDoc should really be notified of the excessive sleeping, because overmedicating can make things worse. Just my 2 cents.

[fellow]

I have a sister too and luckily she doesn't have a mental illness. I, on the other hand, have schizophrenia and I was diagnosed roughly 5 years ago. In the beginning, I was put on a high dose of Risperdal (it was gradually increased) and it changed me in many ways. At first it felt like part of my brain was shut off. Thankfully I wasn't psychotic anymore but I did have a pretty bad case of akathisia (an intense inner restlessness type of feeling) and I felt hopeless and desperate for help. The medication made me act in ways I wouldn't have acted otherwise. For example, one time my sister was in the living room watching TV and I came over and sat beside her on the couch. I kept looking at her until she looked at me with a puzzled look. I kept insisting that she help me somehow. I was in a lot of psychological/emotional pain at the time. She didn't know what to do and she became annoyed. Things changed after I switched medication. Now we have a great relationship. Please be patient with your sister. A large part of the way she is (her behavior, attitude, etc) is due to the medication and of course the illness. It's not entirely her fault is what I'm getting at.

One thing I found helpful is playing board games such as Monopoly with my sister. The idea is to play something which is based on chance. It's easy to play and fun and not very stressful. I used to play chess with my dad all the time but that became too stressful. Playing cards might be another good one.

I hope you found my post helpful.

[costello]

Originally Posted by fellow

I did have a pretty bad case of akathisia (an intense inner restlessness type of feeling) and I felt hopeless and desperate for help.

I would like to know more about this, fellow. My son is having attacks of what we first thought was anxiety/panic, then akathisia. Now I'm not sure it's akathisia at all.

The attacks are periodic (a couple of times a week). I don't see him actually moving around during them, but he says he wants to move. We're trying various things to manage them. Currently benadryl seems to knock them out.

What confuses and concerns me is that during these attacks the voices sometimes return. He says the voices "make sense" which I guess makes it harder to resist what they're saying. He says he can make them say nonsense (I'm glad he has a bit of control), and when they're saying nonsense he doesn't find them as compelling. Also during these attacks he has alterations in his vision. He says things become clearer and sharper. Especially faces and numbers and letters. He feels like there is some meaning in the numbers and letters that he has to decipher.

To me this doesn't sound like akathisia but psychosis breaking through.

His pdoc is currently lowering his medication (Zyprexa). He's down to 20 mg from a high of 35 mg. He's begun to gain weight and this is something that greatly concerns the pdoc. He doesn't like Zyprexa for this reason. My son is currently at 157 pounds and gaining. This is his highest weight ever.

So... I'd like to see the pdoc continue to lower the dosage, but I'm worried that what we're calling akathisia is actually signs the lowering is going too fast.

Other recent signs are that he slept not at all the night before last and his sense of humor seems to be fading (always a bad sign, he has no sense of humor when he's psychotic). A couple of days ago I was joking around and said to the dog "bite him." The dog doesn't know what that means and wouldn't bite him. My son just stared at me with that unblinking look he gets for a couple of minutes. Then he asked, "Were you serious about the dog biting me?" Any other time he would know it was a joke.

[mgran]

I'm sorry to hear that your son is struggling, Costelllo, it must be very unnerving for you. Apparently I lose my sense of humour too when I'm ill, but I'll laugh at completely inappropriate things, which can cause offense. (A simple example is laughing during a tragic scene in a movie... everyone else is crying, and I'm laughing fit to bust a gut. Or laughing at choir practise, during a particularly poignant song... this last is really disruptive, particularly if I'm seeing hidden meanings in the lyrics which nobody else sees.)

Perhaps your doctor could let him rest where he is for a few weeks longer, till he settles. I've reduced slowly, and my most recent reduction led to some symptoms, so I sat where I am a bit longer. On Friday night I'm going to start cutting down again, please God.

How is your son today?

[costello]

Originally Posted by mgran

Perhaps your doctor could let him rest where he is for a few weeks longer, till he settles. I've reduced slowly, and my most recent reduction led to some symptoms, so I sat where I am a bit longer. On Friday night I'm going to start cutting down again, please God.

How is your son today?

I hope the lowering can slow a bit. The weight gain may compel the pdoc to drop him a bit more next time. I don't know. This doctor seems really, really concerned about weight gain and Zyprexa. He's mentioned it several times now. He just doesn't like the drug much. But so far every other med my son has tried has been an unmitigated disaster.

And if what my son is experiencing is akathisia - and not break-through psychosis - then lowering is probably the right thing.

I'm at work right now, so I don't know how he's doing. He did sleep last night, for which I'm grateful. And yesterday evening he was laughing and joking a lot. He was giving the dog a voice, speaking for her. He did this really goofy voice and had her "saying" really funny things. It was good to laugh with him.

Then he started worrying about physical problems. He tends to become convinced he has various physical problems with his body. It's usually the first sign that things are going south. When I suggested that he look his questions up on the Internet, he asked if someone would be monitoring his searches. <Sigh!>

So it's up and down.

[fellow]

Originally Posted by costello

I would like to know more about this, fellow.

I'd be happy to answer any of your questions. What would you like to know?

If I may ask, how would you define these words:

-akathisia
-anxiety
-panic
-stress

I suppose all of the above can have very similar definitions. Maybe not so much akathisia, though, but they did seem to accompany it. For instance, when I had akathisia I did feel stressed/anxious/panicky/etc. I recall pacing around the house a lot and having a lot of built-up energy.