Most of us have been around the block long enough to know about side effects. And the TV ads, how they go on and on, they list so many side effects so fast that you can hardly understand them!
Wouldn’t it be hysterical if they listed all the side effects that a medicine Doesn’t have?
“Could you go a little slower please…oh did you say that there is no cardiac risk for elderly patients with dementia, no high blood sugar?” “Really?” What else? We’d be on the edge of our seats, avidly listening. As it is, they’ve covered their butts and we’ve tuned out.
Meds do offer great quality of life in some cases. Not all. I keep reading blogs from people going through really tough patches!
I’ve been good since July. Don’t worry about it too much anymore.
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.
You would think that people in the business of helping sick people would want to. I wrote this letter to Mayo Clinic, (who is not taking on new patients) to get on a waiting list and got no response. Color me surprised!!!
My name is Allison Biszantz. I am writing you to request an appointment. I recently read the book “The End of Illness” which mentioned genetic and enzyme testing which might benefit me.
I am 54-years-old and live in Hollywood Florida. I am on disability and am a writer for Nami local, Nami.org and International Bipolar Disorder. I was a disc jockey and medical transcriptionist for the first ten years of my diagnosis. Before that, I went to Stanford on a Volleyball scholarship.
When I was 29, I had a full blown manic episode went to 60 day neuropsych at University of Utah and was dx with bipolar 2. In 2000 Bipolar I and antipsychoticws. In 2007 Tardive Dyskinesia, (very well managed with 2.5 mg Xenazine and 50 mg Clozaril, although it took three years to find a solution and many appts.)
I’m Bipolar with ADHD, currently dealing with depression and running out of options. I’ve had the same doctor for fifteen years and I’ve stayed out of the hospital all that time. My doctor does not want to deal with the Mayo ‘Standard of Care’ Cytochrome P450, CYP2D6 or CYP2C9 testing and I am looking to find a doctor who is willing to do that test for me and consult with me. I’m willing to travel. Or be referred to someone in my area if you know someone.
I want to write a series of pieces for IBPF about this cutting edge science and how it might be helpful to someone with bipolar disorder.
Would you be willing to help me? I’m willing to provide more info if you request it.
I’ve been lucky in that somehow I’ve been picked up as a blogger by International Bipolar Disorder and NAMI but truly for every four submissions I send out to other digital publications, only one gets picked up. I got really close to being picked up by Bipolar Magazine’s digital arm, “Bipolar Hope.” They take a lot of drug company money in terms of advertising and I challenged them by sending a Tardive Dyskinesia story. If I had really wanted the twice monthly opportunity, I should have sent them a glossier blog on a ‘shiny happy people’ (REM song) topic. See, IBPF has the distinction of being totally independent financially from the drug companies, so we bloggers can be a bit more truthful, blunt, even, if the subject is so. But we balance it out by emphasizing that it does get better.
The rest of my submissions are rejected for one reason or another. There was Stigma fighters, I guess that evaluating my 25 year struggle on paper I told too many stories and talked about meds too much. When you develop Tardive Dyskinesia, Sexual Side Effects, Terrible Constipation, Constant hunger and Metabolic syndrome (half-way to diabetes thru no fault of my own…I eat good am very active and slender) it’s pretty hard to ignore the challenges and victories over those problems like they don’t exist,
I mean think about this: How many of us have gained or watched a loved one weight and not be able to lose it after being put on psych meds? There are advances in Western Science and Alternative solutions too, and I want to write about my journey. After all, I’m still alive and pretty happy.
Then there was the ‘seeds of hope’ submission and they objected to too much personal narrative and not enough of a “we can conquer thru ideology” presentation. So I’ve realized that in all this advocacy, I have to nurture myself, focus on what’s really important and develop a thick skin. And to stick to my own platforms, like this blog and the book I am writing. Does anyone else out there ‘feel’ me?
If you had volunteered to do a one minute vlog about your experience, trials and ultimate triumph with Tardive Dyskinesia, hit on some of the stigma and discrim due to ignorance and fear on the part of the doctors, and emphasize that there has been great strides made in treatment and even a little bit on prevention, who do you think your major audience would be? If you said the word Tardive Dyskinesia, which demographic would know exactly what that is, be concerned about getting it and tune in to my video to hear the mostly good news? I wonder. I’m trying to work it out. This charity’s largest group of clients and Facebook Clickers are women, from young to middle age. They are already probably pissed off about rapid weight gain with some of the new antipsychotics. And they probably don’t know it yet, but that leads to hyperinsulinism, metabolic syndrome and diabetes type 2. And TD is in the cards for them too. What I want them to learn is that 80% are quickly treated with a medicine and are fine. The rest, well there are all kinds of new meds and med combinations so it’s not as bleak as it was when I got it. I want to spread hope, not fear.
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