Hi! You know, to give you the best answer, I think I should ask you a few questions first that will help define the problem and the situation.
This is clearly a very difficult situation. I am assuming that your son has Bipolar Disorder (BD) but with psychotic features. Meaning that he can be delusional. Is this correct?
Invega can commonly cause shaking or involuntary muscular movements. This might be what he is experiencing. Most antipsychotics cause weight gain. But I have one patient right now who is also experiencing weight loss with antipsychotics. So it's not that rare.
The problem is whether the cure is worse than the disease. You have to tell ME the answer to that: do you think his current situation is worse of better than before any of the meds combinations? Is he more or less stable? Suicidal? Functional? Etc.
Have you discussed these concerns with the psychiatrist? What is the response?
Any extra information that will help, feel free to share.
At age sixteen our son was an honor student and a wonderful musician. In his first episode he was manic, couldn't sleep, lost touch with reality,etc. He was diagosed as manic depressive. On lithium he managed to get through high school and into college. He had an episode in his junior year and had to finish school off campus. He did get his bachelor's degree in math. He went to Alaska for two summers. Both trips ended in episodes. The last was the worst. He was catatonic. It took six months to get him back. He just sat for hours on the sofa with little response. That's when he was diagnosed as schizoaffective and put on Trillithon.
In the day program prescribed after his last hospitalization, other patients introduced him to smoking. Now he's horribly addicted. He drank alcohol heavily for the last several years, but when his psychiatrist told him he must not drink on Invega, he went cold turkey and stopped. We were amazed, but he says he didn't really like the taste of alcohol. He says he "really likes" smoking. For the pulmonary test the technician wanted him to stop smoking for two hours beforehand, but our son could not, and he was really stressed about it. I've never known him to skip an appointment before.
Is he dilusional now? We have no reason to think so. His psychiatrist asked him if he heard voices or saw things, and our son said "no". What we do know is that he cannot handle any kind of stress, especially in interacting with others.
Our son gained a lot of weight for awhile. Then he started eating erradictcally. He wouldn't eat with us. He would devour whatever was in the refrigerator at night. The weight loss might be from the smoking according to his psychiatrist and his medical doctor. We are worried about his lungs. We have a medical appointment today. He sees his psychiatrist, who has been on vaction for two weeks, next Tuesday.
Our son's hands shake slightly. They did that before the change to Invega. He doesn't want to drive. We think he doesn't trust his reaction time. The stiff, robotic movements of his arms are new since April. The loss of facial exression is new and very sad. Our son has a wonderful, clever sense of humor. He doesn't recognize when we are joking. Simple one idea sentences he can understand, but he can't follow complex conversation.
Our assessment of the meds is he's exchanged one set of bad reactions for another. He is more zombie- like now. He is more compliant and dependent now. I have to tell him to comb his hair and wash his hands. If I tell him to wash his clothes, he will. His life revolves around smoking and walking.
Is he suicidal? No, we don't think so, but he says he feels "terrible" in the afternoons and evenings. He is less funtional. He can't play the piano, board games, or drive. He's upset by new situations much more than before. His memory is worse.
We discussed some of this with his psychiatrist. He increased the dosage of Invega. He said he might put him back on Trillithon or try something else. We have started giving our son multi-vitamins and fish oil every day.
Thank you for your help.
Thank you for the added information. It helps a lot. I believe I can now be of help with this issue.
I can imagine how overwhelming, distressing, and frustrating this situation must be for you. You are clearly having a hard time finding the right combination for stability and functionality for your son.
And this is actually the key to my answer to you that you need to consider and think about. He is exhibiting signs of schizophrenia more than Bipolar Disorder (BD) based on what you're telling me. And his reaction to meds seem more in terms of schizophrenia as well as the doctor's attempts at correcting the meds. I don't know if it makes a big difference at this point as the meds are very similar. ECEPT when you get to adverse reactions and lack of stability and you start having to mix and match the meds. That's when it gets to be a question of what the focus is going to be.
I want to share with you my honest impression: I think you need to get more professionals involved. I am not trying to cast doubts on his psychiatrist. But this is a very difficult and atypical case of BD. My sincere recommendation?
If this were my relative, and given that I believe in "team" work for complicated case and I do work on teams with schizophrenic cases that are complex, I would urge you to find who in your area is renowned as expert in working with BD and schizophrenia and contact them for an evaluation. This might be someone in a different city in a big university hospital. The key will be to present this to the psychiatrist. If he can get on board with the team approach, that you're looking for a consultation, then he might even be able to make the referral. Otherwise, you're going to have to be proactive in searching this expert out.
I would also look for the psychologist in the area who is considered most expert in working with BD. Which gets me to the behavioral part here. It is hard to think of behavioral interventions because the meds are so integral right now in trying to stabilize him and determining if they're part of the problem or not. But I am working right now with a schizophrenia patient who's having that problem as well. And the behavioral work we're doing is helping him a lot with his anxiety, attitude, and motivation. So let me put in my ideas on that for you here. Okay?
I'll address it to him because he may benefit. Here goes:
On the one hand Bipolar Disorder (BD) depends on managing your moods and being stable. You are having a hard time getting just the right combination of meds. Okay. We'll have to work within those parameters. Most people with BD rely on meds to manage their moods. We however need to use a more comprehensive management strategy because the meds aren't working smoothly yet for you. But you should know, the management strategy I'm going to talk about is one that I use in treatment not just when meds are inappropriate. Meds are not enough for many people with BD to keep stable. There has to be a manual management strategy in place. Also, at the end I'm going to paste in a technique for you to use to help you bring down the anxiety when it's present. It's not a cure, just a technique you can use throughout the day that is very helpful.
In my practice, I use the management resources with people with BD from Mary Ellen Copeland. I have found her work easy for people to use and easy to keep with him . The biggest problem is forgetting to keep to the plan when times are good and then something happens! Copeland also had BD and was hospitalized. She's a therapist and developed a BD treatment protocol called Wellness Recovery Action Plan (WRAP). First let me cite one of her books for you. The Depression Workbook: A Guide for Living with Depression and Manic Depression by Mary Ellen Copeland. Amazon: http://www.amazon.com/Depression-Workbook-Guide-Living-Second/dp/157224268X/ref=sr_1_1?ie=UTF8&s=books&qid=1284317815&sr=8-1-catcorr
Now here's a YouTube search I've put together on the WRAP program. I want you to look at the videos and see what you think:
The video with Mary Ellen is a bit strong but worthwhile. Okay, so you see I hope my point here:
I believe from my experience that it is SO important for you to not just take the meds and expect them to do everything. YOU have to take charge of managing every and any aspect of your BD that you can. And having a strategy like the WRAP program is a coherent way to do this. So that you can regulate your moods as they cycle. Here's what I mean:
Most people are like cars with automatic transmission. They tool around the day going from a little sad and then they feel a little glad and if they get to too high a gear, the emotional transmission just automatically sends them back to a lower gear and if the low gets too low, the transmission clicks into a higher gear. Rarely are they thinking about it. They are usually within their normal range.
You with BD are like a car with a manual transmission. You start having a racing mood and unless you downshift manually, you're going to be out of control soon until you can't maintain that and you cycle down and then get too far down, etc. So you have to continually use the clutch and manually adjust the emotional gear.
That's what a program like the WRAP plan is about. It gives you the tools to notice what's going on and to make adjustments. So that is why I'm stressing it for you.
I wish you and your son the very best!
Now, I want to give you a tool to use for when the depression is overwhelming or there is anxiety. Here are instructions on a therapeutic protocol called Progressive Muscle Relaxation (PMR). It's really quite easy to do almost anywhere. My patients suffering from depression or anxiety, when I teach them PMR at first are amazed how simple it is and that it is a psychological protocol. It was first used in the 1920s! Since then, of course, it has been refined and many studies have been done showing its effectiveness. You will practice PMR at first when you don't wake up with an attack so that you will be familiar with it. I want you to practice the PMR at least 5-6 times before an attack or feeling acute anxiety. Why? Because when you're in the throes of anxiety, you will only remember to do something you are very familiar with it. So practicing 5-6 times is really a minimum.
I want to stress the importance of breathing as well. Part of the physiology of what is happening to you in anxiety is that your breathing is getting shallower. This reduces the oxygen in your blood to your brain. That increases the anxiety reaction, which strengthens the attack and you are in a vicious cycle! Not good. So breathing is the primary tool. I have found in my practice that learning breathing techniques can be helpful. But some of my patients are not interested in learning more than one thing at the beginning, so I have found that just reminding you to BREATHE deeply at the same time you are doing PMR is almost as good. If you are willing to take a yoga class and learn breathing techniques, that's the best. But, breathing deeply with your PMR will help. So, we're ready for learning PMR. I want you to print my instructions below my signature and have a copy in each of the rooms of your home where you may be when you have an attack. And again, you need to practice this easy technique at least 5-6 times as soon as you can. It needs to become as natural to you as breathing. Ah, remember breathing?
Quickly focusing on each group one after the other, with practice you can relax your body like ‘liquid relaxation’ poured on your head and it flowed down and completely covered you. You can use progressive muscle relaxation to quickly de-stress any time.
What You Need:
Thank you, XXXXX XXXXX for your suggestions. I do have more questions. Are you saying that Invega and Trillithon are more for schizophrenia than for BD? My understanding of schizophrenia is that the person sees and hears things that are not normal. BD is more about moods, mania and depression. Is this correct? Our son seems to be more BD. He denies seeing and hearing abnormal things. What are common medicines for BD? Lithium is for BD, right? I'm not asking you to prescibe, but do you think medicines specifically for BD would be more helpful?
Our son is on disability. This is the psychiatrist that the state mental health provides. Our son has no insurance other than Medicare and Medicaid. We would love to find a team of doctors or an excellent psychiatrist for BD, but that would be very expensive, correct?
I have read that it's very difficult for the mentally ill to stop smoking. Our son tried the patch, but the times and so forth were too complicated. Three days ago he tried Nicorette gum. He managed not to smoke for 2 1/2 hours, but he has no interest in doing that again. Does smoking affect his meds? How can he stop when he is so addicted?
Thank you for helping us.
Please remember to click the green accept button because: even though you have made a deposit, I do not get paid for my time unless you press ACCEPT. Feel free to continue the discussion as my goal is to get you the best answer possible. You can continue the discussion even after pressing ACCEPT. Bonuses are always appreciated! If I can be of further help with any issue, just put "for Dr. Mark" in the front of your new question, and I'll be the one to answer it. All the best, XXXXX XXXXX
Dear Dr. Mark,
Our psychiatrist suggested we try an antidepressant, such as Prozac. These drugs have a bad reputation. I am hesitant to agree to one. What do you think?
Also, what is causing the stiff, robotic movements and slow reaction time? He didn't have that before this summer.
Our son tried the relaxation routine and said it helped.
You have been very helpful, and I will pay you with a bonus. After I pay, can I return for another session without explaining our son's situation all over again?
Thank you, XXXXX XXXXX The psychiatrist is going to try zyprexa starting tomorrow. I guess this means another two to three months of experimenting. If this doesn't work, we'll take your advice and try another doctor or a team of doctors.
My son fed his little baby for the first time on Sunday. He seems to really enjoy (smiles a little) the little guy in his arms.
I hope the new medicine gets rid of the stiffness in his arms and that there are not bad side effiects as he withdraws from Invega.
I want to tell you that it has been very helpful to be able to ask questions freely. As parents and caretakers we seldom get to talk about our situation with a knowledgable professional without being told he/she can't say anything without our son present or without his permission.
Thank you for your time and help.
Diet: cut out coffee, sugar, white flour. That may be tough. But you will see results as some of the newer research shows. Also, take Omega 3 fatty acids. Either in flax oil, fish oil or capsules. You need to take daily a clinical dose, about 2-3,000 mg a day. The research is conclusive on this for depression and positive for anxiety issues. So that's diet. Oh, and lean meats only. No fast food restaurants, no fatty foods.
Exercise: 5 days a week moderate exercise, to include 3 days of strength training as he will get more used to it. Pretty amazing isn't it? What you put in to it you will get out of it. His doctor will verify the research results show the benefit to overall health, anxiety issues, and physical problems.
What I'm looking for is a sense of creating personal momentum, "owning" his health more and his feelings. So while these things may not "cure" anything, they can lead to many good outcomes for him.
All the very best to you! Dr. Mark