Allison Strong i have a huge grievance over seven years of abuse and was directed to an agency to improve quality of service. i wrote out a seven page letter including doctors who would confirm the egregious conduct of a particular Quest Diagnostics lab service location and the systemic problem i found among representatives, being denied a number for a supervisor, finding out at the last minute, when I needed service most, not being able to make a payment plan to secure or guarantee my service, if i didn’t get it i wouldn’t get lifesaving medicine. The agency that improves quality of health told me they don’t investigate grievances of laboratories who draw blood for diagnostics. I need help. This abuse can’t go on. I’m on hold with medicare now. They were the ones who sent me to the agency who says they don’t deal with labs. Round and Round I go.
She’s not even sixty. How can people say we’ll lead a ‘normal’ life? And she wasn’t even on lithium although she was on MAOI’s even though not depressed. Everything she’s been on has been very high dose. She has paranoid schizophrenia and has been a patient all her life. Now it looks like that might be over.
Lately I’ve been taking an antidepressant I regard as a miracle drug. They don’t know exactly how it works but it works on some four different neurtransmitters as compared to Wellbutrin’s dopamine and Prozac or Zoloft’s Selective Serotonin Reuptake inhibitor. Those just work on one. This medicine has a side effect of violent nausea, and I’m not the only one. It’s listed as the third most common side effect.
There was a period of two weeks where I could not keep it down. This is three weeks ago. Mike had a trashcan next to the couch where I was laying while I tried every which way to keep this medicine in my system to retain my fine mood. I went through bipolar depression relapse in April-Mid July of this year and though I’ve gotten past ‘worrying’ about its’ inevitable return, I don’t want it to. This antidepressant is a huge boon. Nothing works quite as well. We’ve tried. In fact, it works so well I only need to take it twice a week. Why should I take more?
I ground it up and put it in my protein drink and attempted to work out at the Y. Bad idea. I ate full, balanced meals and still…..I was sick. I dropped 12 lbs in ten days by pure happenstance. When people tell me that certain drugs make them nauseated I don’t even want to hear it. I am desperate to claim the therapeutic benefits of this drug, Brintellix, no matter the cost. Depression is feeling like dying 24/7, or in my case, my waking hours. My whole world goes dark. I’m putting it off as long as I can. Of course it would be nice if a new antidepressant were to come along but there hasn’t been a new FDA approved medication for depression since 2013. I think we’re due.
The Word ‘Diabetes’ is even worse than ‘Tardive Dyskinesia.” It’s clinical, cold and calculating. It’ll getcha! However, because of my atypical antipsychotic ( twice as sedating and weight gaining than the others in its’ class), I have elevated blood sugar levels and was worried for a while because the docs wouldn’t tell me exactly what they were. So I thought it was worse than it is.
I’ve been studying and changing things in my life. I’m using self as study subject, which is problematic in and of itself.
For a long while I cooked to relieve stress. Then I ran out of enthusiasm for the 1000 or so recipes I’d clipped out of the newspapers over the years and stopped. Actually, I’d rather write than cook but that probably is all of us.
I was reading ‘Diabetic Living’ and learned a ton of stuff. First, there are more diabetes drugs than I can count on four hands. So those magazines are not ever going to be an endangered species. The one I got ahold of have at least six colorful, imaginative but not too complicated recipes and as I worked out, I ripped the pages out and stuck ’em in my Walkman.
I was glad I’d read the magazine. I totally hit the jackpot for simple, sumptuous recipes that day. Now all I have to do is clip them smaller and tape them to index cards and make two copies of each to account for spills, wear and tear, not to mention misplacement.
This letter is my fourth medical endeavor for the day. I’ve had my clozaril blood test, have an injection in my back at 2:30 pm, picked up contacts, called for a refill of one TD medicine and now am trying to get prior authorization for the other. Unable to take Cogentin like most people, I’m on combination therapy for Tardive Dyskinesia.
I’m not trying to cause a panic.
(It’s just that sometimes my complicated medical situation, though it’s not life threatening, seems more complicated than it’s worth. I’m also ashamed of it, my family seems to think the side effects are my fault or caused by me. This has led to familial isolation).
This is worsened if I’m dealing with Depression. At those points even the little things are hard to manage…things like showers. I just don’t think I’m worth the effort during those times.
As for Tardive Dyskinesia: Not to worry.
Most people with movement disorders are just fine with Cogentin or Artane. Seems I’m the exception. I’ve had bipolar disorder for a long time and am just thankful I wasn’t put on lithium long-term and only take a minute dose of clozaril, as they both can strain kidney function.
I’m about to fax this missive. All of this eats into time I’d like to spend reading, studying or writing. Can you believe this stuff???? Anyone relate?
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I am on hold with your office right now and it’s going on the fifteenth minute oh, wait, now I’m disconnected after all that hold time.
As a person swimming in a sea of side effects from 25 years of well managed bipolar disorder, it seems these types of tasks are never ending.
The reason I called your office in the first place was to let you know that even though my biannual appointment with Dr. Moore isn’t until March, I’m only preapproved for my Tardive Dyskinesia Medicine until February and need for you to request another for me.
I hope you are having a great day. I look forward to hearing from you and will followup this fax with a phone call and hope I have better luck with your phone operators.
Why I’m a Rebel? Why I have a Cause? My Cause is my fellow mental health consumers who have to take medication and hope it works. I also include in my ‘Cause’ treatment providers of all types who are trying to help us. Even the primary care physician who says, ” Stop taking Your Clozaril if you want to avoid Diabetes,” he just doesn’t know better.
There’s got to be a better way and I’m fighting for it. I’m willing to swim upstream like the salmon before they spawn and die. I’m going to die at some point. When I was a bitter, newly divorced self medicating ExPat traveling Baja California there was an extreme sports line of clothing called “Die Trying.” That’s the level of ‘fight’ in me.
Anyone who has to lay out their medications daily and change them up when they stop working knows they are buying time. But this fight is not over before it’s over. I mean, OVER.
..Presently I am trying to buy time on the metabolic side effect …to delay the big “D” forever.
I’m terrible at self care and the idea of testing my blood sugar all day is daunting. I struggle to brush my teeth twice a day.
As far as the medical fallout from Diabetes type 2, well, from being a professional athlete and runner, I’ve had five foot surgeries.
I don’t want to surrender what’s left of my feet.
I’m trying holistic things suggested by various sources to improve the function of the pancreas. So my letter to a chiropractor and asking him to help me heal myself metabolically is what follows:
This is a very Geeky letter. I’m the friend of Clair Blake’s that came in for weight loss, put down 200.00 so we could do acupuncture for it and then promptly disappeared. I want to come back MWF for some adjustments suggested by the Edgar Cayce Readings. I’m enclosing a copy of the ones I mean to see if I can come and use up that credit with your acupuncture for pain and chiro for pancreas.
The reason I never came back before was my utter shame in gaining weight with your treatment rather than losing. But my medication is the driver behind that.
I have to take it for quality of life. It’s my medication for a permanent neurological side effect of Parkinson’s like movement disorder called “Tardive Dyskinesia” exhibited by thrashing and shaking.
In the end, I did manage to lose the weight but still have metabolic healing to do. I have high glucose levels, another side effect, structural and functional changes in protein molecules that fold maladaptively and jam up the pancreas.
I’m using myself as a research subject to see if naturally I can get my numbers down. I’m implementing quite a few changes after I have my baseline AIC and hormone levels checked, hopefully, a “Before” and “After.” You probably know a great deal about hormones too.
I hope you are open to this.
I’ll follow up with a phone call and you can deduct a session or two to compensate you for your time. If we are successful in getting my numbers lowered, you will be one of the few people who know how to help this unfortunate metabolic challenge facing people on second generation antipsychotics that I didn’t need In the first place but now am married to.
Allison Biszantz “Strong”
h Tardive Dyskinesia from high doses of a particularly stimulative one…one that self promoted on the basis that you wouldn’t gain weight. In my experience, the two side effects are metabolic challenges and/or neurological movement disorders but if the doses are low enough..you might be able to avoid at least the latter. Anyway..here is another one of my ‘letters’ to someone trying to involve them in my self research.
For those of you on meds that affect your metabolism, make you hungry and gain weight, science is addressing this. I’ve read a few studies and am following up with the researchers…studying the studies…so to speak. I’m doing a metabolic series for one of my mental health digital publishers and am digging around for new information. Here is a copy of the letter I wrote to one of the researchers of this med related phenomenon.
Dear Dr. Tucker
I’m a person with bipolar disorder journeying towards type 2 diabetes because I must take Clozaril for Tardive Dyskinesia I’m under the impression that you did a study with Dr. Khalafian on metabolic changes related to atypical antipsychotics. I read it and wondered if there had been any follow-ups on possible future treatments either with BGP-15 or any other chemical compounds.
I lost the weight and kept it off through radical diet and lifestyle changes. I weight train regularly and get as many hours of cardio a week as there are days. I’m now on Metformin but my numbers are still on the rise.
I’m backed into a corner and wondered, as I’m a journalist (Bipolar Hope, NewLifeOutlook, NAMI etc.), there is any new information, especially as it relates to weight independent hyperglycemia.
I have that post prandial phenomenon where the simple act of eating, even if it’s healthy, balanced proportions of food groups makes me even more famished.
Many of the other writers hare having the same trouble. But you knew that. Looking for any followup information I can find I’m enclosing a self addressed, stamped postcard for you to jot down if you know of any more studies or progress made on this issue. If you’d be willing to converse via email or telephone, you can indicate this and just put it in the mail.
I’m doing a series on Bipolar Metabolism and am looking for anything I can to shine a ray of hope that medicine is making progress on this issue or continuing to study BGP-15.
Allison Strong bipolarbrainiacSFL@hotmail.com
Hi, it’s Allison.
I know your time is valuable which is why I’m hoping you’ll accept my check for reading and evaluating this letter about my metabolism.
I’m really strugging.
On a day to day basis, I journal my food and my hunger level. I’m rarely satiated-famished all day with a hunger level of 7. It’s hard to focus on anything, especially my writing and/or daily duties like hygiene and self-care when all I do is prepare healthy food to carry around with me so I can eat every hour.
The hunger is worse when I take my Metformin. Why do you think that might be?
Eating, even low carb meals makes it worse. I can’t figure this out and need your help.
I don’t have hunger pangs but a feeling of jittery irritability and the feeling that I’d do anything to get some food. Not sugar necessarily but I did faint recently in Kohl’s and had to eat half a candy bar.
So the only time I’m able to do anything with a clear is in the morning before I’ve eaten. It’s my ‘golden time.’
It’s hard to ‘do the right thing’ when the right thing makes life harder.
As you know, I’m on Clozaril, the drug causing this metabolic problem. But it helps me greatly with Tardive Dyskinesia, stabilizes my moods, helps me sleep predictably and regularly, even though I’m in pain most of the time.
I know you recommended I try Saphris or Latuda but those drugs likely as heck, according to my shrink, would aggravate my TD the same way Invega, Invega IM, Geodon, Risperdal and Zyprexa did. At the end of a three year period of no symptom control, even the sedating seroquel aggravated the tic, or rather; thrashing. Forget about sleep or signing my name. It was a horrible period of time.
I am one of the unlucky few who can’t take the highly effective first line treatment Benztropin (Cogentin).
I pay a high price for TD symptom relief beyond metabolic difficulties. Weight management is epic. Thank god I love exercise (weight train and 8 hours of cardio a week), and changed my diet to 95% raw foods.
I have monthly blood for absolute neutrophils and WBC, had to reduce my Enbrel for psoriasis and have to really take care of myself to have good labs. It’s a pain in the but safety protocol Teva and the other generic giants have in place to prevent agranular cytosis. (sp?)
As for your suggestion that I ‘get off Clozaril,’ I’ve tried. I put myself in intensive outpatient so I could try in a supervised setting. First we tried Invega, Seroquel, Risperdal, Abilify and Zyprexa, all of which aggravated my symptoms even more. You probably already know that atypical and traditional antipsychotics as well as Reglan cause Tardive Dyskinesia in the first place.
This is totally illogical but when one removes the causal drugs, even carefully titrating lower and lower there’s this “Withdrawal Emergent Syndrome” where the symptoms are wildly worse. I was admitted to the ER three times for this and as you might imagine, the ER docs just wrung their hands, shaking their heads. You’d have thought they were the ones in observation from the looks of their faces!
I’ve had bipolar I since my first full blown manic episode in ’89. For a long-termer like me, Lithium would have been worse. I’m glad it’s my only drug allergy or I might be on dialysis by now, much worse than what I deal with currently.
I need you to help me buy time on this metabolic thing, help me delay the progression. (Hopefully until after I die).
I’ve already had five foot surgeries (Fusions bilateral and more) from professional sports overuse injuries (pro beach volleyball in LA), and I really like what’s left of my feet!! LoL!
Is there any way that I could have my blood sugar levels monitored more frequently as I employ changes in my weight training, diet, herbs and other holistic approaches? I’m finding Cinnamon helps with the hunger but online the reports are mixed. You’re pretty advanced and I think you could really help me delay diabetes.
I might even try pancreatic supporting chiro and possibly acupuncture. But first I need to find out if my Metformin is too high or why I’m starving all the time.
I’d like to do this and ask you if you think I should see an endocrinologist.
Thanks so much for reading my missive. My shrink says I’m an ‘exotic.’ Thank God he puts up with me. I’ve stayed out of the inpatient psych ward for sixteen terrific years save a few long term bipolar depression relapses. Now that I’m writing for four different mags, life is pretty good, except when I’m hungry all the time!
Comments anyone? Anyone else out there struggling with these issues? I really hope to buy time until science catches up to this problem. Believe me, they’re scrambling. There’s just too much good money to be made!!!
This is why I read the New York Times. I get mental health coverage that I get nowhere else. Apparently toddlers who throw tantrums or are seriously withdrawn and have other behavioral difficulties are getting atypicals in swiftly, dramatically growing numbers. From last year to this, the numbers have doubled. The database will not release the names of the prescribing physicians. These are usually GPs and they are not trained in psychiatry. Part of the problem is the lack of child psychiatrists in the united states.
This is a long post but what you read may help you out. I’m going back on the trail of researching and finding someone to do genetic testing on me for the best metabolized psych med in the event of my next bipolar depression due to antidepressant fatigue. My antidepressants last typically for a year or two and then poop out. I want to know, ahead of time, what would be the best pill to take. In the last five years, I’ve had incredible luck with Viibryd (2 years), Brintellix and Fetmiza. All of them worked in a week or less and lasted from 8 months to two years. Right now I’m on a combination of Wellbutrin (which I took effectively for a five year period starting fifteen years ago and Brintellix, which is a new drug that they don’t know exactly how it works but for me it was a ‘Rescue’ drug that I use for Code Black situations. I only take it twice a week.
Yes, I talk about meds a lot. Many people with mental illness are still sick, wondering if they are on the right medicine. this post is super long but it’s about a brand new way of finding ‘the right medicine’ that will work for you, as an individual, for your brain chemistry. I think it’s important.
Many of you know that I wrote a letter to my nearest location of a Mayo Clinic, in Jacksonville, Florida. I live near Miami, in Hollywood. My letter was ignored. At Mayo clinic, no matter what kind of health problem you go in for, genetic and enzyme testing is “the standard of care.”
No matter what, when you go to a Mayo Clinic, they do genetic testing and enzyme testing to see what drugs, not what class of drugs-we already know if you need a a statin for high cholesterol for example, but which exact one, be it Lipitor or Zocor or Crestor…see what I mean? Narrowing it down to the exact brand or generic name.
It is important to narrow the possibilities or possibility down precisely to dose you with what YOUR body will metabolize the best.
The problem is that Mayo clinics aren’t taking any new patients and my request to be put on a waiting list when I tried both the Phoenix and Florida locations was met with, “We’re sorry, we aren’t taking new patients and there is no waiting list.”
This sounds like the VA. I wonder if they took pages from the same playbook. Sometimes the medical profession can be a cold, calculating place.
Back to the topic of finding the right or a new psych medicine if you’re in a depression relapse,
If the doctor just ‘guesses’ what he thinks might be right, (or which new drug has been promoted lately by a drug rep in whatever means they promote-I’m told Golf trips are sometimes involved), there’s a chance that your genetic makeup and or enzymes will not break down the drug it will just freefloat in your bloodstream; jamming up your internal eliminatory organs, increasing toxicity, negative drug-drug interactions and (god help us) chronic, incurable side effects, like the Tardive Dyskinesia I took. The drug I think caused it was not real effective for me, so my dose was jacked up beyond the recommended top end, and I think that was the last thing I needed-I needed a different drug. This is why I got sick with TD and will have it for life.
What is ideal is finding a drug that your metabolism (read enzmes) breaks down into molecules small enough to pass through the blood-brain barrier, so it can do its’ work and make you whole again. This is very important.
I’ve heard Medicare pays for this testing but right now, but not every doctor who takes the measly compensation of Medicare reimbursement wants to deal with the extra paperwork.
And the ones that will do it that I talked to want ridiculous sums of money, like 500 bucks, to administer the tests, read the results and then prescribe the best drug.
Furthermore those types of ’boutique’ psychiatrists are often the ‘all cash’ ‘no insurance’ and certainly ‘no medicare insurance’ type and don’t do hospital rounds anywhere. That means, that if you are like me, Bipolar I, and might have to go inpatient, they don’t want to treat you. They way they put it to me last time I was depressed and worried I might have to go inpatient it was clear that they did not want ‘acute’ cases, as they put it.
They want the well educated, well heeled, well-off working professional with a mild mood disorder willing to come up with the cash each month for their med check.
Most of the seasoned, really competent good psychiatrists I know (and I’ve had ten second opinions while staying with the same doctor for fifteen years just to know who is out there) well, they’ve already done decades of hospital work and don’t do it anymore either!!!
Pre-retirement, they are reaping the rewards of their years of experience in the trenches, ministering to the very ill, like I was when I met my shrink of fifteen years.
He no longer accepts Medicare or Medicaid or insurance as of 3 years ago. On the plus side, there is continuity of care and I’ve not had to go inpatient for that period of time. Knock on wood.
But I digress again:
Back to the point of Genetic Testing: We’ve known for some time that not every medicine works for every person. Sadly, for psych patients in depression or a relapse into bipolar depression or schizo issues, it’s a painfully long period of trial and error.
Like I said, one time it took Dr. L to help dig me out of the dark. We tried this and that and in the end we tried another SSRI and I was one of the subgroups of the population who has to wait twelve weeks, not four, for the SSRI in this case, Prozac generic, to become effective. Whew, what a relief. If we had genetically tested me, it would have shown that Prozac would not have been a recommended choice. It only lasted a year anyhow and I had another relapse and switched yet again. I was lucky again. The first one we tried, worked. By the way, he’s cool, he knows I have a sixth sense and lets me help choose what he offers.
Recently I saw a testimonial to the effectivement of genetic testing in a reply to a post on International bipolar Foundation’s Facebook page. Those people, by the way, as well as bipolarhope.com, (bphope.com) are good resources for general and specific information on all sorts of things.
Not to be deterred by the fact that my local mayo clinic’s chief of psychiatry ignored my letter, I’m going to try again. I’m going to announce my journalism credentials and tell them I’ve got both a personal and profession interest in testing to find out which antidepressant would be best in the need of diggin out of my next bipolar depression.
My last one was in April and lasted until July. It was shorter than the year-long one in 2005, but unendurable just the same. I considered suicide every day.
You guys might think I’m strong, like my name but that’s an aspiration. I’m actually not.
I have severe chronic pain and some days I worry about the day coming where I’ve outlived my body’s usefulness and can go no more.
With all the crazy healthy lifestyle choices like raw foods diet, daily exercise and weight training (even though I hate it), I have this feeling I’ll live to be 90, accumulating more side effects from the medicines for side effects.
I’m already swimming in a sea of them. Once again, side effects or the absence of them, can be traced to finding, as Nine Inch Nail’s Trent Reznor said, “The Perfect Drug.”
(For Tardive Dyskinesia info it’s both on IBPF Youtube channel under “Tardive Dyskinesia” part one, symptoms and cause and statistics and part 2, Getting treatment and the Website, ibpf.com “Move Over Movement Disorder).
I’m going to try again to get them to see me, even though they say they are taking no patients.
I’ll let you know what happens and when it happens. If this shit didn’t work, no one would be doing it.
Reading Material “The End of Illness” David Agus, M.D.