Tardive Dyskinesia

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:

www.osmosis.org/answers/somnolence Info on somnolence

www.hsph.harvard.edu/nutritionsource/caffeine Info about caffeine consumption

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

Just found a free online support group for those of us with tardive dyskinesia and mood disorders! The platform is HeyPeers.com, search for DBSA (Depression and Bipolar Support Alliance), today, Jan 17, at 9pm.

So excited! I haven't done a DBSA (or any other) meeting in months. It's later than I'd usually go for, but I'll make an exception.

#TardiveDyskinesia #BipolarDisorder #SupportGroups

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

Hi, my name is jaecybone. I'm here because after 15 years of being on Seroquel (2006-2021) for what was prescribed to me for PTSD and Insomnia. I had a lighting bolt moment 11.14.7.229 Sunday @ 1:30pm and it told me to throw out all the Psych Meds. I became completely cognizant for the first time in YEARS. And my weight and "physical" health were getting better by the day. I was 220 lbs. @ 5' 7", Kidney Enzymes Crazy High, Liver not doing well - Basically dying when I stopped Seroquel all together. Within 3-4 months I had lost 50 lbs. I got in shape. Best physical shape of my life probably. Then came the ticks, twitches, mouth, face, hands, neck, cheeks - Concentration issues. The Cognitive impairment...Every one thinks I am just Crazy, on Booze or Drugs. I try to tell the ones closest to me about what I found out about what was happening to me and the drug Seroquel, they don't even believe me and/or care at this point. I don't even want to leave my house now. Too scared.

#MightyTogether #TardiveDyskinesia

#TardiveDyskinesia

Tardive Dyskinesia is brain damage. It is a medically induced (iatrogenic) INJURY caused by 500 different drugs often used in psychiatry, gastroenterology and Parkinsons. People are rarely told of the risk. It's often referred to as a side effect of the medications. This is offensive as a side effect is not a crippling life long disease. Tell the truth psychiatry and western medicine. Your drugs harmed us...own it and start telling innocents of the risks basefore you drug them.

hello! good to be here. thank you Thomas! Looks like a great group. I'm happy to be here. Here is the article you suggested I share.

the below is the text to the article. there is a video on the site it comes from that is very much worth watching (9 minutes long) beyondmeds.com/2022/09/14/life-with-tardive-dyskinesia

I’ve posted a couple of times about having TD. It is an awful debilitating, crippling and disfiguring disease caused by iatrogenic injury. I just discovered the National Organization for Tardive Dyskinesia so I thought I would share. There is very little accurate or clear information about this disease. I have avoided doctors mostly as I’ve not encountered anyone that seems like they would do anything other than harm. Neurologists who treat TD are prone to use psych meds and the MDs I saw mostly shamed and dismissed me as crazy. I did have a psychiatrist who was also a friend diagnose me and it’s very clear that I have TD. I go from being physically okay to being able to hardly stand up in the same day. I suffer from acute and chronic pain in my face, head, neck and shoulders. I am often totally unable to function as a result of this drug injury. I’ve written very little about it because this site was about recovering after coming off psych meds and well, I’ve got my mental health but I am not well. It’s likely I will never be well. My only goal now is to learn how to cope better. As readers of this site know I’ve exhausted all manner of behavioral and lifestyle healing methods. This is not an easy ride.

(video is placed here: beyondmeds.com/2022/09/14/life-with-tardive-dyskinesia/)

My work on TD is below. I’ve experienced it very much in my own way and written very little. Perhaps I’ll write more moving forward. My experience suggests systemic infection as it’s clearly involved with the various systemic infections I was diagnosed with as Lyme Disease. (Lyme is amorphous systemic infections that vary greatly from person to person depending on the combination of pathogens…if the organisms associated with Lyme disease is presnt you can say you have lyme disease…it seems to me many people have systemic infections complicated by heinous biofilms that don’t always get diagnosed as lyme…so I don’t really like that diagnosis as I think it’s lacking in clarity.)

TD also varies greatly in severity. It seems the brain injury from long term use and withdrawal made mine severe in some pretty particular ways. I look forward to getting to know others with TD and am scheduled with a group support meeting at the organization that made the video.

My pieces that include my early musing on TD: for links go here: beyondmeds.com/2022/09/14/life-with-tardive-dyskinesia

Hi, my name is NOTDbill. I'm here because
i am a caregiver for someone who has tardive dyskinesia and tardive akathesia. I also work for the National Organization for Tardive Dyskinesia. We provide online support groups via Zoom for those with TD.