It just occurred to me that my greatest resource is right here on WP. I had an experience (well, actually I’ve had many) that I need to write about so that it doesn’t happen to other people who are on the medication that causes it. According to NAMI, 30-50% of people on ANY type of antipsychotic, be it first or second generation, if they take it for over a decade, they have a 30-50% chance of getting a permanent neurological disorder that’s called “Tardive Dyskinesia.” Nice. I know. It happened. And I was the ‘hot potato’ that no one wanted to help…or have anywhere near.
The whole damned thing is not attractive but I learned a ton of stuff in the three years I searched the world for symptom control.
There’s a hell of a lot more things you can do to lower your odds than to simply not take the medicine. But that’s why I want to write the book. I made a couple videos for IBPF (international bipolar disorder foundation) and they need a wider audience. People who are concerned or worried or who have the problem will find me, believe me. I just need to get the book out there. I’m fine with self publishing. I’m fine with offering a free downloadable product too but don’t know if I can afford to do it that way. I just read today that a badly ‘formatted’ book hurts sales. I don’t even know about what this ‘formattting’ stuff is. Who does? Are there people out there who (unlike Authorhouse and other self publishing firms) can guide you through Amazon “Create Space?” If there are, please, let yourselves be known. Once I get the first one done, I have many more books in me. I finally broke down and told my husband I need him on ‘my team,’ as he’s really technologically intelligent.
Recently I visited the Youtube channel where my videos is and saw it had gotten 300 views. Of the twenty comments, 80% of them had been on the same atypical antipsychotic as I had been. There’s something there, believe me.
International Bipolar Disorder Foundation allowed me to make some informational videos on the topic of Tardive Dyskinesia and from my three year search for sym
This is the Day I’ve been Waiting for…all of my life.
Today I was approved for a grant for expensive, Brand New, Tardive Dyskinesia Medicine. Whew!!! Then, my Video Blogs were posted on my publisher’s site, IBPF, International Bipolar Disorder Foundation.
Here is a link to part one. It’s a two part series on a very common, horrible side effect (Parkinson’s like it makes me understand Why Robin Williams pulled the plug. Involuntary thrashing tremors, etc-wait, I’m spoiling the fun. If you want to take a quick peak on a mental health advocacy Vlog and what it looks like to Vlog in general, here it is. I’m so brand new at all this, let me know at least if they are live. This syndrome side effect of Atypical Antipsychotic drugs like Abilify, Geodon, Latuda, Saphris, Invega, many of whom market themselves as antidepressants or helpful for bipolar depression, meanwhile the public doesn’t realize that they are on such a heavy duty drug!! I really wanted to get the word out, because it happened to me and it’s really common. People don’t know.
Bipolar: Why press on? Bcause, you could be the breakthrough in…
Towing the Bipolar road, is, for most of us, tolerating the that we ‘never get ‘well,’ having to be satisfied with better or worse. We never are cured or become ‘undetectable.’
Sometimes it sure isn’t fun, abstaining from alcohol and recreational drugs, keeping journals, curbing our enthusiasm for online shopping, and especially, slamming the breaks and truly taking the time to evaluate a mate for their ability to be supportive should we crash. We don’t always do this, but I married a man who left me because “He didn’t want to be married to a woman with bipolar disorder.” It we act on one impulse, we pay for it with the other impulse, the impulse to be safe.
Equally difficult to balance is mindfulness without self focus or selfishness. I fail at this often and am often rejected socially, labeled an ‘intense’ personality. (That’s one reason that I chose Allison Strong as a radio name, you either ‘get’ me or you don’t. It worked in radio, my ratings were high due to polarizing people, in life it don’t work so good. In fact it hurts like hell.)
Then there’s the bitter pill of the limitations, the hard work, the mood swings (especially the depressions), when the meds just stop working, the subsequent waiting rooms, and the weeks where I have three or four doctor’s appointments and scream with psychic overload. And you want me to add a therapist on to that overload???? Are YOU high?
What keeps me from flipping the switch to ‘off’? (Partly because once I do that, there is no return. So I stay where I’m at, the loser I am..staying out of fear of the unknown. God I crave a drink right now.
And, because, you, me, or anyone else could be the breakthrough, the outcome, the coping strategy, discovery or treatment in bipolar disorder that we’ve all been hoping and waiting for. If I take that drink or flip that switch I’ll never know. For all I know, I might become famous. But I’ll never know if I kill myself. Ooops trigger warning.
I have noticed that two new antipsychotics advertise themselves as being helpful for depression and never mention that they are in the antipsychotic class. For every year of use the rate of Tardive Dyskinesia is 5%. After a decade of use, Antipsychotics carry a 30-50% chance of Tardive Dyskinesia according to NAMI and other sources. Tardive Dyskinesia can be difficult to treat. I have had it since 2007. The drug companies should stop misleading people and telling lies of omission regarding their latest and greatest antipsychotics. Yes, they may help with depression, but they are not antidepressants. They are mostly given to people with Schizoaffective disorder and Schizophrenia until lately. Yes, they are a quick fix, but one that can come with a price.
Quantico Sept 27 ABC young, ethnically diverse FBI recruits (Sundays)
Rosewood (based on Movie) Fox 9-23
Rosewood Fox 9-23 Miami police detective with a pathologist (Wed)
Limitless based on movie about designer drug CBS sept 22 (Tue)
Empire Fox 9-23 (Wed)
Blindspot NBC 9-21 Crime drama (Mondays)
How to get away with Murder ABC 9-24 (Thursday)
2016 “Vinyl” directed by Mick Jagger and Martin Scorcese
PBS Sept 27 Indian Summer (TV Series.)
Indian Summers PBS 9-27 has to do with India under British Colonial Rule (Sunday)
Blood and Oil is an upcoming American prime time television soap opera created by Josh Pate and Rodes Fishburne, set to air on ABC as a part of the 2015–16 television season on Sundays at 9pm as of September 27… More, 2015. Wikipedia (Sundays)
The Widower pbs 10-4The Widower is a made for TV film, that was broadcast in three one-hour installments, on ITV in 2014. It portrays the crimes of real-life murderer Malcolm Webster. ITV described the show as: “The Widower tells how, over a 13-year period, a seemingly mild-mannered male nurse, Malcolm Webster, set about poisoning and murdering his first wife, attempting to do the same to his second wife and moving on to a further scheme to deceive his third fiancée.”  The series was written by Jeff Pope.
Agent X Sharon Stone TNT Nove 8 action adventure
The Knick 10-16 Cinemax
Red Oaks Amazon 10-9 Drama (Stream)
Nov 17 Medical Drama Code Black
Blind Spot…someone who has forgotten their identity
Having gone through a bunch of long and short depressive episodes, I got into a terribly self focused habit of waking up and immediately ‘taking my mood temperature’ to see what kind of day I’d have. Rather than think about what I want to get accomplished or who I’d like to lend a hand to, I think about myself. I mean, I think it’s helpful in a way, but it can also lead to spiraling downward, wasting time and diffusing focus on life itself.
I’ve had more than my share of depressions in the last three years. So I got in the habit of living in fear of the next one. But I’ve learned that it’s equally important to be aware of manias because they lead to depressions also.
I’ve also been identifying triggers and they are so many. So many, in fact, that life is a virtual landmine. How to I turn triggers inside out so I see the upside, the growth opportunity for them:?
Too many doctor’s appointments
a critical conversation with my dad that feels like judgement
Family not understanding bipolar or believing it’s a real disease
Not writing enough
Computer malfunctions and forgetting to save my work
Not enough exercise
Having learning difficulties on software programs
Clothes not fitting
Being too busy
Not reading enough
As you can see, if I take these and twist them around it would make for a lot of growth, self forgivement and acceptance. Hey, maybe I might be able to focus on others for a change!
Tardive Dyskinesia resources and research. When I became bipolar I and started hallucinating and thought I had kids, (I don’t) I was put on Seroquel. It was a great drug for me and I believe, based on my experience, that it is a drug that doesn’t cause as much TD. But it has other side effects, which I blather on about endlessly.
I want to help. I want to get the word out there to the 200k people who have Tardive Dyskinesia and can’t take Cogentin like me. It gave me blackouts. If you don’t have this problem or know someone who does, never mind. But be aware that Nami statistics, (and they are funded partly by drug companies so their figures would be conservative) Nami says that 30-50% of us, if on both original and or atypicals like Abilify or Latuda, just for two to mention, over a ten year period, will come down with some kind of movement disorder. No reason to be scared, like I said, most people can take Cogentin and it’s just a bump in the road. I think like 90% can take Cogentin without a problem. And you can always switch antipsychotics or lower your dose with your doctor’s approval. I tried, in the hospital, to wean myself off my antipsychotics because to remove the cause makes sense, right? Wrong. Those of us with chronic TD, even if we carefully titrate down develop “Withdrawal Emergent Syndrome” where the symptoms get worse. This means that we have a chronic, lifelong, permanent condition. But we need our antipsychotics, right? I know I did. When I came off Seroquel I was so weepy, fragile and hallucinatory, paranoid.
We’ve been messing with the messages in the basal ganglia (base of the skull in the neck) so long (they regulate thought and movement) that it all rushes out like a dam or levee that broke. I am married to antipsychotics forever. But there is light at the end of this tunnel. I’m writing this longass blog because of the responses and questions I receive when I mention my Tardive Dyskinesia. I have some info about research and helpful meds that not every doctor knows or cares about. Let me help out here, since I’m the poster child for Tardive Dyskinesia. Or so it seems. that is my platform, Tiny as it is. Because the suffering I went through was anything but tiny. And if anyone else with TD wants to Guest Blog about their experience or their knowledge of it, be my guest, I’d love to have you contribute to the pool of knowledge that those of use who have it have picked up along the way. Otherwise, I don’t expect you to be interested in this. I am not trying to cause a panic, but we need to be careful about doses and meds.
A lot of people I am reaching thru my blog question me about ‘who helped you with Tardive Dyskinesia?’ Since I was stigmatized, labeled as psychosomatic (even tho Tardive Rates for us on antipsychotics are as high as 50%) I often just got sent up to psych. Initally I was helped by changing antipsychotics back to Seroquel. But the illness progressed. People who have it in their neck and jaw can be helped with Botox injections. I was initially put on Requip and that worked for a month. Then they put me on the other restless leg syndrome drug and I got another month and then it stopped working. The drug that ended up helping the most is a drug doctors don’t want to promote, for reasons I elaborate on at the bottom. I’m sorry this is so long, if you don’t have Tardive, there is no reason to read this.
I struggled for 3 years. One clinic, the National Parkinsons Disorder here in Miami had a specialist who told me, “Your case is pretty hopeless. Get ready to Suck it up.” But he did prescribe Xenazine, or Tetrabenzene (also called) which helped a little but caused depression. I Googled every day and went through various result fields. I saw four local neuros who wasted my time doing complete workups, head MRI’s and all and shook their head in disapproval about the fact that I was on a Benzo. (Tranxene) I guess they thought I didn’t deserve any relief. Remember, there are doctors like that out there.
One more google search led to a movement disorder clinic up the state from me, Shands Movement Disorder Clinic. Call them. Write them to try to find another specialist near where you live. Many neuros have no clue about my medicine for reasons I will elaborate in a minute. Shands is located at University of Miami, Gainesville, Florida. I mention the university affiliation because other times with …medical mysteries I’ve had good luck with University doctors cause they still care about their work. I write them letters or emails. Anyway, My doctor was a neurologist and he had been doing research with clozaril. I was already on Xenazine and it was helping some, but a small amount of clozaril finished the Tardive off. Other people can be helped with Baclofen, chewing gum, Amantadine and antihistamines and Long acting Benzos like Klonopin or Tranxene, and maybe have a faster one on hand when a thrashing attack starts and they want to quell it. my doctor’s name is Ramon Rodriguez, but he’s gone to clean up the mess at the VA in Orlando. But you can write him. He has been replaced by a wonderful female doctor. Also….THERE IS ONGOING RESEARCH there is a company called Praxis, Website WWW. Kinect4Study.com and there may be studies within a company called Clinical Connection. Or Segal Institute. Google “Studies for Tardive Dyskinesa. To get in a study you have to tell them a lot of stuff, and often if you are on other meds they won’t take you. But the Kinect study, which was given to a friend of mine at the NAMI convention two weeks ago, they know you are on psych meds because that’s what caused the TD in the first place!!!
One more point: The reason that the use of Clozaril in low dose is not widely promoted or known is multipronged: 1:There is a 1% fatal side effect, but #2: they have safety protocols in place, namely blood tests to make sure that doesn’t happen. #3 Doctors, who are overworked enough, don’t want to write the scrip for the lab work, and in the first six months the labwork is every week. Then it drops down to every two weeks then it drops down to once a month. It is absolutely Mandatory. # 4: It’s a geneeric drug and no one stands to make any money. It’s the most underprescribed and unfairly maligned drug out there. It was a miracle drug for me along with the Xenazine in small small doses (larger doses of Xenazine create depression) These things get complicated.
It’s the same thing with MAOI’s, doctors don’t want the complications. I had real bad tardive dyskinesia for three years, people looked at me with fear in their eyes, I was Michael J Fox X20 for three years. There are currently 200,000 cases of this disorder in the country and a bumper crop to come, since doctors prescribe antipsychotics too often in my view, because they act quickly, and are a quick ‘fix.’ In my journeys to Shands Movement Disorder in Gainesville, I have met several people given Abilify or Latuda because their wife left or their dog died. Not the same as a true mental illness. And the risk of heart attack and stroke goes way up when elderly people are given these drugs. For a while there were a lot of class actions against Geodon, and I tried to get on one, but my case would be impossible to prove since over the years I’ve been on so many. But once again, in my view, the more sedative antipsychotics (Seroquel and Clozaril in my experience) are less likely to cause the problem . Also, it can be prevented by using the minum therapeutic dose and you can work with your doctor on that. I’m only on 100 mg of Clozaril and it stabilizes my mood big time. If you know anyone with uncontrollable muscle movements in their face, jaw, smacking of lips or in their neck or extremities, encourage them to seek out a movement disorder clinic. #tardivedyskinesia #tardivedystonia #schizophrenia #sideeffects #bipolardisorder #endthestigma #amwriting #manicdepression #extrapyramidalsideeffects #neurology #movementdisorderclinics #Parkinson’s
I want to write a book that chronicles some of the more informational, colorful, and courageous aspects of my 25 year illness. I want people to hold it in their hands and feel less alone, less odd, less..well, hopeless. The book might take five years to write. And I’ve got to buckle down and get practical. It’s not about the money. It’s about being findable, accessible to those who need to hear a message of hope about Tardive Dyskinesia, mood swings, finding a good doctor and all that stuff that comes with this.
It’s about people being able to relate or even think…”wow, that bitch is nuttier than I ever was! Maybe there is hope for me after all.” Of course it gets complicated with the Eating Disorder that has been a big player in the whole game. A lot of folks can’t relate to that.
But the eating disorder deserves its own book, really. We’ve all had different journeys. I read an article about a young woman in the New York Times Magazine who had been on lithium for 20 years. Her big quote besides the lithium lakes in Bolivia was “I don’t believe in God, But I believe in Lithium.” But lithium is causing her kidneys to underfunction by 50%, and if she doesn’t switch soon to Depakote, (and hope that the switch works for her) she will be on a transplant list for a kidney in a few years. I sort of dodged that bullet, since my psoriasis is totally inflamed by lithium to where I look like a Leper. So eventually I got antipsychotics, came down with tardive dyskinesia…so which bullet did I dodge after all? It all looks like tradeoffs to me, when you get down to it.