Hello all, I am new to this community and to this disease in general. My daughter has recently been diagnosed after two years of misery. She is starting to get slightly better, but my concerns are for the tremendous amounts of medication she is taking and the side effects. Mainly shaky hands, nausea, and some more painful body issues. She is only just turned 19, and takes 40 mg of abilify, 600 mg of seroquel xr, Xanax, topomax, thyroid meds, and Limictil. She just turned 19 and it is breaking my heart to see her take so many pills. Is this dangerous at such a young age? I know you all must have way more experience than I. Thanks for any help in advance.
As a former psych nurse, I can tell you that your daughter is on a pretty heavy combination of medications. But as far as them being dangerous, I wouldn’t worry about that.
The main side effects from the combo she’s on are sedation and akathisia, an involuntary movement disorder that can resemble figeting or shaking.
Of course, with long term use of this heavy combo, she will need to have labs done to check for liver, kidney, metabolic, and thyroid function (I’m sure she’s already being checked for thyroid function).
So, please, try not to worry so much. She’s in the hands of a competent doctor.
My son is now 20. He used to be on more meds then he is now. 450 Clozapine, 600-800 Lithium, 200 Trazadone, 900 Neurontin, 1 Risperidone in a day. He has been on Abilify, Venlaxafine among others.
As radmedtech notes, as long as they are monitoring her liver etc functioning then there shouldn’t be any issues.
It is always with some sadness that I welcome someone new to this forum - but it is good you have come to join us.
My son is currently on a pretty minimal number of meds, but some of his positive symptoms are worsening, so I plan to ask the doctor what might be added.
It is such a catch-22 - add meds to address symptoms, or worry about side affects!
You are all wonderful and I can’t thank you enough for responding. After all of this time, I still often feel I am in the “anger and acceptance” part of all of this. As we live in a small town, there is little help for her with group therapy because she has no addiction issues, just mental illness. The only places that offer treatment are for kids recovering from drug use. We have considered moving, as thus far we have barely kept her out of a hospital. It helps to know that the medication will not be dangerous as long as she has her blood work. It is staggering to me how little help there is for mental health issues. This all came out of the blue with hallucinations and voices, though now I see some signs from childhood. There is no history of illness on either side of our family.
they may reduce all of them soon, she’s on a pretty heavy combination now, they may wanted to control the illness and then decide about minimum effective dose.
Yes, that makes sense. It is all still so new and overwhelming. The first psychiatrist we had was awful and would just ask her simple questions and throw her on meds. There was not a lot of follow through. We are with someone new who also figured out she was of the wrong thyroid meds. He asks her much more in-depth questions about her hallucinations and voices and also tries to get her into meditations for anxiety and social fears. He is the one who made the diagnosis recently, so I hope we are on the right track now.
I started to take meds when I was 13, I’m 30 now. Last year I developed kidney stones and the doctor wanted to check my parathyroid which turned out to be greatly enlarged. I had surgery to remove one of the components otherwise I would have kept on having kidney stones and would have developed osteoporosis. It turns out that was from the lithium which I was on for years. The meds have also caused polycystic ovary syndrome and caused tremendous weight gain which caused further problems. I have sleep apnea, am prediabetic, have fatty liver, high cholesterol, and high triglycerides. I also suspect my tachycardia is from the meds.
That is how it happened with me. I was on pretty high doses of various meds when I was first diagnosed. As I got better and healthier and went to therapy to learn coping tools and stress and anger management classes, my med’s got cut down further and further. I’m on a light/moderate amount… 50 mg seroquel and 40 mg latuda. I still have symptoms and some glitches. But 90% of the time I can get through my day pretty well.
I’m giving up smoking now… I’m down to two cigarettes a day. If I cut it out, I might be able to be on a lighter dose again. Cut down the coffee, and be on an even lighter dose. It’s my hope to be med free someday. I’m slowly working towards this under the care of my doc. I’m not playing fast and loose with my meds on my own.
Did they ever monitor your liver, or blood work over the years? It must be frustrating for you all of these years later to have so many side affects from the meds you had to take! I feel you are all brave warriors with having seen only a small amount of what my daughter deals with on a daily basis. Do you feel as though your symptoms are more under control now that you are older?
Then you are better than I as I went back to smoking myself through stress. (It is an old habit) I was hoping today would actually be my first day of quitting so here’s to that idea. Again, I have so much admiration for the fight with the med challenges and symptoms you must handle daily. How tremendous that you are lowering them all with therapy and the doctors help. I hope that we might lower my daughters as you said, when they get her symptoms managed. Up to now it has been really hard to do. I am trying to convince her that so much of this is up to her, and not just the medication… I am sure that is a hard concept at 19.
I have akathisia and was put in additional meds for it. My antipsychotic works like a charm but gives me tremors, bad tremors in my legs, I remember kicking like a mule lying in bed the first night on 120mg of Geodon. I take Xanax and propanolol for tremors and they also reduce my anxiety, which I am treated for, I have pretty bad anxiety separate from my schizophrenia. I feel anxious right now because I just woke up and took 1mg of xanax and it hasnt kicked in.
I was an alcoholic and I refused medication at 19. I will be 21 in a month. Now I am fully recovered and very highly functioning, functioning very well in all areas of life- I am an honors student on a full ride to college, I am a competitive powerlifter, I have plenty of friends, I make all A’s most of the time (finals are next week, I might come out with a B this semester in one of my classes) but since meds my GPA has been a 3.96. and I can squat over twice my weight 5 times. I really got my life back, there’s hope that your daughter can too.
The medicated lifestyle is like substituting schizophrenia for side effects. I live with side effects. I sometimes ask myself if it is worth it, and I realize that if I keep my performance in school up, I will most likely get a scholarship to grad school just like my scholarship for my undergraduate degree, so I don’t even think about going off my meds. It’s a hard life, she will never be “normal”, just like I will never be “normal” regardless of how I look on the outside.
Stress and trauma can trigger a relapse. Be careful not to let her find herself in stressful situations. I myself have to watch myself during finals because I might just lose my mind if I don’t keep my ego strong and let finals intimidate me.
Last semester I nearly became psychotic due to midterms and papers. I was screaming and hitting my head against the wall. I called the doc and he phoned in a script for Xanax, and I took it and calmed down and he has kept me on it since then.
Yes they have and still do monitor my blood work. It is frustrating to have so many side effects, but the APN I see is planning on trying me on Latuda which has significantly less side effects. My symptoms are starting to get more under control. The ECT has been the driving force for that. My old pdoc said that in my 30s my symptoms would calm down a great deal and I’ve noticed that. There was a period where I couldn’t go four weeks without ECT, but I recently went three months because I decided I didn’t want to get it anymore. The APN I see didn’t like that and said she wouldn’t change my meds without getting the treatments. I really need her to take me off the Risperdal because my Prolactin levels are high and I haven’t had my period for a year. I wish you the best of luck, things will get easier.
Lowering my med dose has been a long process. I was diagnosed when I was 17 and I’m 29 now. I’ve only been able to lower my doses the past two to three years. It’s been a very long time getting to this point.
Plus I had other comorbid complications going on during many of my years. It may take some time, but it is possible.
I do find my med intake rises and falls with the stress levels. When my sis went in for surgery… I was a mess and my dose went back up. When she pulled out OK and got to come home and she was healing, my dose level when back down.
I do believe that the dose should be a little more flexible once the person stabilizes. Not everyone goes through high stress constantly or no stress constantly. It’s a roller coaster of highs and lows. I wish docs would look at this idea maybe and rethink that one specific dose is what will do it for the rest of duration.
Just another note thanking all of you for input and help. We just came back from the doctor, and further complications in that they think her adrenals aren’t working. Her thyroid doesn’t either. I think this is why her anxiety and paranoia are worse than they should be on such high levels of meds. Time to check it out. I really appreciate all the good advice on trying to balance the meds with the symptoms as this seems very hard to conquer. I can imagine that the stress coupled with social anxiety makes all of this very hard to manage. I would assume as we get older and have more life experience with schizophrenia, you understand what triggers you much more. I like the idea of body building or any form of exercise to try and build the good endorphins.