Utterly intolerant to Antipsychotics, Strongly considering Lithium or Lamictal as Monotherapy for Schizoaffective Disorder.By SheltieUnderdog
I've been on and off antipsychotics sporadically for the last 7 years since age 22 (since 2011). I'm extremely sensitive to them and have a very high response to every one I've been on. I've gained 145lbs from an increase in appetite and metabolic changes, have severe akathisia that is utterly insane and makes me want to cut my own legs off, I developed severe gynecomastia from Risperdal and Invega respectively (Won the Risperdal lawsuit, but no surgeon will touch me because of my weight), experience anxiety (The most on Abilify), fatigue, drowsiness, impotence (On Fanapt), anhedonia (From aggravated depression on Haldol), blurred vision (On Fanapt), lack of concentration, mild tardive dyskenesia (In combination with TMJ syndrome, I think it's permanent), dry eyes (Can't secrete my own tears), nasal congestion (aggravated, because I have it anyway without taking APs) , disorganized speech (Literally developed a speech impediment from a combination of Fanapt and Topamax), GI issues, etc
I've experienced almost every common recorded side effect from this category / class of drugs. The lack of control over my weight and appearance and the akathisia are the worst (that's why they're listed first and reiterated). These drugs have destroyed the relatively abysmal life I had before I developed this illness and presently cut it down to absolutely nothing. I have no life. I spend the majority of my life either going to multiple doctor's appointments for my medical issues or otherwise eating uncontrollably, and pacing back and forth and smoking cigarettes occasionally. I browse the internet with my thoughts racing. I might try to watch a TV show or play video games or play bass guitar like I used to but I can barely hold concentration or focus long enough. I want this to end, I really want out. I want to experience a fraction of life again.
I was previously diagnosed Bipolar 1 With Psychotic Features before my 2nd and most recent episode. As I said, I haven't taken APs consistently for 7 years. I've gone off of them twice for pretty significant periods of time before I relapsed. I usually last about 10 or 11 months (almost a year) without symptoms and perform consistently better in life in general with everything gradually going back in my life to when before I was 22. The side effects and depression usually disappear within a week. At 5 to 8 months I'm very stable, but in just under 11 months I start feeling like I'm on top of the world, become severely manic and delusional, hallucinate, experience an episode, and get into legal trouble. The 1st time around, I resisted arrest during a welfare check called in by my parents and went to the hospital and the 2nd time I successfully eluded the cops by motor vehicle on the highway and got caught hours later and went to county jail.
I understand I could be facing harsh consequences but I've never been on a heavy mood-stabilizer before. All they do is overload me with APs. After the 1st episode I stopped taking psych meds completely because of how much I despised how I felt except for Zoloft and resisted almost all treatment. I avoid SSRIs now and will this time because I think it may have been responsible for raising my mood too much before the 2nd incident took place.
The key to preventing future incidents for me, I believe, is to make the hallucinations and mania more tolerable to where I won't feel the need to act on them. The delusions are a joke, I can easily handle them. I'm currently taking Latuda 20mg and I'm requesting that my psychiatrist allow me to keep 2 or 3 bottles stored in my cabinet or 1 on me at all times in case any symptoms were to occur while taking Lithium. During the last episode, I was frantically searching for antipsychotics or any appropriate psych medication but didn't have them because I threw all of my former meds away after the first episode had taken place. This time I will have them to back me up and if it turns out that I need to suffer immeasurably on Latuda 20mg or another AP for the remainder of my life then so be it but I deserve a chance on a mood stabilizer simply because of what I've gone through and what I'm experiencing on APs.
Has anyone ever tried Lithium as monotherapy for schizoaffective disorder or bipolar 1 with psychotic features? I hear it still has some side effects (would like to know what all of those are) but that it's immeasurably more tolerable than antipsychotics. I realize many people use it in combination with an antipsychotic but this is not in reference to that. Is there anything better than those two that's not an AP? This post is simply to inquire about anyone's thoughts or experiences about using Lithium or Lamictal as monotherapy for schizoaffective mania. A dosage and frequency recommendation would also be appreciated from those that have taken it, although I realize that I will ultimately need my psychiatrist to determine that.
I found 1 study on this subject from the early to mid 1980's here: https://watermark.silverchair.com/10-1-30.pdf?token=AQECAHi208BE49Ooan9kkhW_Ercy7Dm3ZL_9Cf3qfKAc485ysgAAAcYwggHCBgkqhkiG9w0BBwagggGzMIIBrwIBADCCAagGCSqGSIb3DQEHATAeBglghkgBZQMEAS4wEQQMAypxqSBIPHx7kbXfAgEQgIIBeTskilYIIUxtfy4i-FH7a6BQ4SrsYxqZG44q7kWx1rVJdLbZ4PMxE33_FUje8rDj4FoUYJI27hYGzv-06pCL6xPDrbVg7n-g9QzqTwoPiRxgDv2VnqzwifudoudTuskAGEKItv5TfD1_V9opXCFF7vJXJln8ij8NeNkMLUpe_n-Xbp6TtkU7rXYdPCZ9dObhTfmQ4PEHkwKfcJcOVAjXzelMWD1EPzWPxCK5zu1l1d2w8ojnqH68mbvgaDuvBxyPTY-EEdADh9N0NIUPQCWHXZKWE2gEBsG_AbWS-bkPdgjxtXcn8Y_5KljQbU2Geb_ERYYWuWFMEk6CRs7FYte_16TOiCQVlahMabKxw0BdjlqvdGaPYZTKBoBWb9Poswigg8jbF1whmlo7WWRyCLCLdbKt4xkmZCU0qmv_j5FTFzeXsq05ptOFY10M3jpUft1xV75pMsPtVJ8U7d42OYqMksXhZyrA8B5k9XNhfJGS0XgmTTSLHNOdcTY2
Speech in general has always been a little bit of an issue for me. I did see a speech pathologist in the past but I was about 12 and didn't care much to benefit from it then. Just for the record, I have always noticed that my speech is much sharper when I'm not taking antipsychotic medications. Strangely enough, I seem to speak the most clearly right before I have a relapse and I am becoming manic. Almost every antipsychotic I have taken has had a negative reaction on my speech but never as much as the most recent, Fanapt. I was recently switched from Latuda 20mg to Fanapt 6mg (once daily) to suppress akathisia. At first everything seemed fine and the akathisia which was a longtime battle of mine was tapering down just slightly on the Fanapt. Then a few weeks settle in and I start feeling like I've been hit by an 18-wheeler upon waking up and just overall sedated and "spaced out". I am forgetting things, mostly short-term memory loss. A few days ago I went into a retail pharmacy to buy a few specific things, walked inside the sliding doors and completely forgot what I walked inside for a few second, although I did ultimately remember a few minutes later. Not just this but I also seem to have developed blurred vision and can absolutely not drive or operate a vehicle on this medication.
Additionally my speech is completely shot and disorganized almost half the time. My speech patterns at times are almost like someone who is borderline cognitively impaired yet my IQ is in the 101-109 range (I am average). I'm forgetting words that once came easily to me and have to scan my brain hard for them, sometimes for over 10 minutes. Usually I know what I want to say but it either doesn't come out right or I just can't get it out in words. It's extremely frustrating and it's causing depression and I've threatened suicide to family and friends yet backed off that is how bad its become. I just want my ability to speak normally to be returned to me. I am coming off the Fanapt but would like to be given some suggestions as to what steps I should take to rehabilitate my speech and what medications are not disabling for someone's speech or what medications could counteract disorganized speech. My current psychiatrist is unsympathetic and doesn't care. And my initial question is can Fanapt cause a speech impediment?
I have bad akathisia right now, driving me to suicide thoughts.
If you don't know akathisia it is an intense restlessness both physical and mental. Every cell is screaming do something! DO SOMETHING! You twitch, pace, smoke cigarette after cigarette. You do not sleep. Your thoughts run wild. You see the only solution as ending your life. I'm typing this as an alternative to pacing, crying, banging head against wall.
It is a fairly common side effect to neuroleptics and a less common side effect to other psychiatric drugs. I got it from 9 days of 20mg fluoxetine, then they switched to 5mg Citalopram (a crazy low dose) and I still have it. I have cut this today to 2.5mg after advice from the Surviving Antidepressants board. Also on 2mg diazepam (a tiny dose) and 60mg propanalol.
Today is the worst it has been.
It's one saving grace is it tends to ease now and again.
There is no real treatment, in fact doctors tend to assume it is a worsening of your condition and up the dose of your meds, so you can't really get help from the medical community.
I went on the anti depressants for a mild case of anxiety. I am now extremely ill
Anyone else suffer this hell?
Because of my extremely negative reactions to almost all the AP injections down the list, my probation officer and my psych are allowing me to switch to an oral medication for my last month on probation before I graduate. They know it's not even a risk if I didn't take it (which I'm going to) because it usually takes me many months to a year for me to become symptomatic and have a relapse. I'm not one of those type of people who relapse in less than a week or even a month. So this Tuesday, I have an appointment with my psych to discuss my options with the oral medications.
According to my psych and what I know, I'm very responsive to low doses of anti-psychotics, almost becoming completely rational in a few hours of taking Zyprexa 2.5mg or Abilify 2mg. However, I'm also very sensitive at the same time and experience severe amounts of Akathisia that last all day from the moment I wake up to when I go to sleep. I could pace back and forth all day if there were no interruptions. I feel like I want to jump through a ceiling or run through a glass door to alleviate the constant need to be moving. We have tried everything from Cogentin, Artane, Propanolol, Clonazepam, Benadryl, and now Gabapentin 600mg 3x per day and all it's doing is helping with my anxiety and stabilizing my mood but not relieving the Akathisia. The counteractive drugs simply don't work for me. Never did. They're to weak compared to the agent that's causing the Akathisia.
I saw a commercial over the summer that claims that Fanapt has a lower Akathisia risk than other atypical anti-psychotics but I'm not entirely sure. It seems that Fanapt has to be taken twice a day and is recommended at at least 6mg after the 1mg starting dose. I want something that can remain low. I've also read that Seroquel, at the higher doses, like 400mg to 800mg can treat schizophrenia with less of the Parkinson like side effects. I've discussed this with my psych and he says he wants to keep Seroquel as a last resort because of its low efficacy. He may not be realizing that I don't have the average type of schizoaffective disorder (if that exists). He's fearing that my claims of the extremely low-dose oral meds while I was in jail is not a true account.
So. conclusively, what is the best option for a schizoaffective patient who's highest priority is ridding the Akathisia while still taking the medication consistently? I don't care about the 100% efficacy or having some symptoms. I just want the ******** akathisia gone. I also have other side effects from this crap they've been sticking in my arm for the last 15 months such as Weight Gain, Gynecomastia (just won a huge lawsuit against Janssen Pharmaceuticals for Invega), Sedation, Fatigue, Depression, Anxiety, Panic Attacks, Anhedonia, Throat Swelling, Involuntary Eye Movements, and Suicidal Ideation. Just to name a good amount of them. Please help me as my appointment takes place later this week and I want more knowledge going into it. Thanks
Ive tried Paxil which almost immediately made me want to sleep. Ive also tried Clonazepam primarily for akathisia from Abilify which had the same effect at first but after I gained a tolerance just wore me down a little so I take that around bedtime. I'm getting major anxiety and panic from being on an low-dose atypical antipsychotic and from my 1 1/2 year bid in jail, which ended 2 years ago, from a psychotic episode (having flashbacks of inmates, guards, and harsh environment). Additionally, I'm completely restless, suffering from somewhat intense akathisia, and have racing thoughts. Nonetheless, I want something I can take in the beginning of the day that doesn't make me crawl onto the sofa and doze off. I want something that is calming yet not sedating. Something that will gradually turn me into a mental superhero. The only one I've heard of so far is Buspirone.