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Weekly Psych Visit…

Went to my weekly psychiatrist visit today. We have been checking in weekly since I have been having episodes with my Bipolar, OCD and GAD since November. It seems historically if I am going to have issues anywhere from Nov to Feb is the time.

Anyway, I am happy to say that he decreased some more of the meds, one of them being the antipsychotic. I’m happy because it makes me super hungry. Like legit hungry in my stomach and not in my head.

I have an eating disorder that I am in recovery for and have been for going on three years. I stick to a food plan one day at a time which is three meals and two snacks. Because of the meds, I have had to have a third snack which makes me very uncomfortable.

I don’t feel like I am going to relapse but and I know food addiction is tricky because it’s not black and white so I’m trying to give myself some grace and love and compassion.

I made some homemade cauliflower pizza and an apple for lunch! Can’t beat the view! #BipolarDisorder #Anxiety #OCD #MentalHealth #EatingDisorders #Antipsychotics #Psychiatrists #AddictionRecovery

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Does Anyone Struggle Just to Get Your Meds?

Does anyone find it frustrating when you need your meds, so you have to see a prescriber, but the cost of the appointments keeps you in debt, or at least adds to it? I'm not saying whomever you see doesn't deserve to be paid, but I'm talking about the difficulty it might pose for you.


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Somnolence - Obnoxious Side Effect # 102

Somnolence is the medical term for feeling a strong need for sleep, often including cognitive impairment and an inability to focus attention. For me, It's that feeling of being on the very verge of falling asleep, barely able to keep your eyes open and yourself upright; it's more than just feeling tired. It's also different from fatigue which I'll cover another day since I struggle with that at times as well.

Somnolence is one of the most persistent and disruptive side effects (I admit, the # 102 is completely arbitrary and just present for dramatic effect) of my medications. It's a major side effect of many anti-depressants, anti-convulsants, and anti-psychotics - basically everything one might take to treat bipolar. It also happens to be a side effect of Austedo, which I take for tardive dyskinesia. It took months for the drowsiness of the Seroquel to subside, and then I started medication for the TD, then had to restart that medication because of a lapse of insurance coverage. Now here we are again.

I have been really, really tired most of the time on most days for quite a while now. On top of the medications, depression, anxiety, and stress can also cause somnolence. I desperately need to wake up and right now it feels absolutely impossible!

*Interesting thing I learned from my doctor: Smaller doses of Seroquel can be more sedating than larger doses, which is why smaller doses are often used to treat sleep issues and larger doses for mood disorders. The more you know!

I know from being on this medication before that this is a side effect that goes away eventually.

It is debilitating. No amount of caffeine or energy substance seems to help. It's physically difficult to get around, much less exercise, focus on any given task, to drive, and to do anything that takes a lot of cognitive effort.

It's frustrating, too, because my sleep habits and sleep quality are actually great right now. And yet after I take my morning medicine (I take the Austedo in the morning and at night), I crash. I ended up sleeping half the day away.

Last time, I was up to 3 or 4 cups of coffee a day and still struggling until I'd been on the therapeutic dose of Austedo about a month. This amount of caffeine is at the upper limits of what's recommended, especially for someone who also has IBS. The end result was being awake part of the day and spending the rest of it in the restroom pooping my brains out.

But things improved eventually and I'm sure they will again. I have some circumstances working for me this time, too. I am up to 15 minutes on my light therapy, which should help in the long run (takes time to work up to beneficial levels). It'll be spring soon, which will help me get my sunlight quota and hopefully feel more lively overall. My recent lab results show that my thyroid and general vitamin levels are good, so I have a few less factors working against me than in the past.

Other potential relief could come from mindfulness practices and light, regular exercise, both of which I've neglected in recent months. There is always room for growth and improvement in all this!

Some useful information: Info on somnolence Info about caffeine consumption

#somnolence #drowsiness #Sleepiness #BipolarDisorder #BipolarDepression #TardiveDyskinesia #austedo #Antipsychotics

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Bipolar meds and Tardive Dyskinesia

It's been about 6 months, maybe a little more, since I took the medication that caused my tardive dyskinesia. This is one of those labelled warnings you see on a lot of atypical anti-psychotics. It's not exactly rare, especially in elderly patients, but it's not common. A summary for those unfamiliar:

Some of my muscles have erratic movement I can't control, most notably my legs at night (very similar to restless leg syndrome) and, worst of all, my tongue. My sister has dubbed this "lizard tongue". It's more that my tongue sticks out and I can't control it. This is known as 'tongue thrusting', though I guess that's not much more dignified than 'lizard tongue'. It is uncomfortable, physically and socially, and embarrassing.

Seriously. Stick your tongue out for no reason in a public, social situation. It's very awkward. And I'm a bit of an anomaly because I was not on the medication as long as most people who develop this problem. Lucky me? At any rate, it's a permanent change for some of us even after coming off the medication. And there is medication to specifically for this and similar disorders.

The meds I'm taking are called Austedo. It's been hell trying to get this taken care of by insurance. The retail value of this drug - which is the cheaper of the two most popular medications for treating TD - is around $8000 for a 30 day supply. To quote the pharmacist, "Ma'am, NOBODY can afford to pay that for a medication."

The biggest problem was clear communication between insurance reps, my doctor, my doctor's office assistants, and the specialty pharmacy. Add to this the bipolar depression that we've been holding off on increasing medication for BECAUSE of getting on (and then off... and now back on) the Austedo...

Today, I finished the titration starter pack and am on the therapeutic dose of Austedo. Last time, it took almost a month of this dose to start impacting the symptoms. Everyone's on the same page, the stars have aligned, and I have high hopes that the lizard tongue is finally going to be dealt with. Some people experience total symptom relief in a month or so, others have significant symptom relief starting in just a few doses. So far, this round, I can only say that my tongue is relatively less active.

Anyone with tardive dyskinesia, eps (extrapyramidal symptoms), or experience with medications for either, please chime in! There is always encouragement to be had from finding I'm not alone! #TardiveDyskinesia #austedo #BipolarDepression #Antipsychotics

9 reactions 8 comments

#Stigma #donating #MentalHealth #Schizophrenia #Antipsychotics #SchizoaffectiveDisorder

Stigma in plasma and bone marrow donations

When I updated my health history for bone marrow donation they removed me from the list. They consider me a safety hazard because I have a psychotic disorder. I recently tried a paid plasma donation. I have had no problems donating for 5he Red Cross. They went over my meds and what they are for. When I got to the antipsychotic and I told them I have schizoaffective disorder, the staff told me that is a permanent deferral. They are secretive about what is not accepted but I am positive it is because they consider me a danger. Even though I have been stable for years.


Advice needed #CPTSD #PTSD #ADHD #Antipsychotics

I have to get off perphenazine (Trilafon) quickly. I’m also on a lot of other meds including a sub-clinical dose of quetiapine (Seroquel, for sleep), trileptal for mood instability, most recently sertraline(Zoloft) for PTSD, and a bunch of other stuff. I don’t have psychotic symptoms and it’s doubtful if I ever did. I started antipsychotic meds in the first place because I was very very anxious that I was losing my mind, due to extreme complex trauma symptoms back when nobody knew about complex trauma. I (mostly) always knew in some tiny corner of my mind that the “psychotic symptoms” I was experiencing were not really psychotic because I always knew they weren’t real and never had trouble differentiating between the visual disturbances I experienced (usually as a result of dissociation), and real visual stimuli. The problem was that I was frequently dissociative and felt like *I* was not real. I also think on some level I knew that presenting as psychotic was the only way out of an extremely unsafe home situation. My mother has been unofficially diagnosed in the past, by my own therapists, with #MunchausensByProxy with me, in an emotional/psychological capacity. I have heard her described that way by at least 5 people. I digress. Sorry ADHD brain is online.

Anyway I’ve been on perphenazine for years and it kind of works, I mean as well as an antipsychotic can, when you don’t actually have psychosis. When I went down from 24 mg to 20 mg last winter I started having extreme emotional outbursts especially anger, rage, super duper anxiety, sadness, increased trauma symptoms, and worse ADHD. Now my prolactin level is high and I’m Definitely NOT pregnant and my NPP thinks it’s the perphenazine. I’m not emotionally stable at all but I’m safe and I’m in a safe living environment with people who are like parents to me, and a sister (also chosen family) 45 minutes away. I have to get off perphenazine kind of fast. My NPP said she would add a tiny “whisper of a dose” of something else, like Rexulti, to make the transition easier. Her first choice was Abilify but I hated that med. I’m nervous. I have 2 weeks to decide what to do. I have 3 months roughly before I have to be functional for school again. I need advice.


Does anybody take Geodon (ziprasidone) and have the side effects of eye tics? What have you done about this?

I have a tic where my one of my eyes at a time close a lot and it looks like I'm winking. It started when my dosage changed from 60/60mg twice daily to 40/80mg morning and night. My doctor is trying to lower me to 20mg/80mg but I'm afraid lowering the dose will bring back psychotic symptoms. I don't really want to change medications because Geodon has been truly phenomenal thus far aside from the severe sleepiness. #shizoaffective #Schizophrenia #Antipsychotics #Geodon

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Does anyone experience nipple discharge from medications? It really bothers me honestly and don't know what I should do. #medicationsideeffects #Antipsychotics #BipolarDepression