Challenging Status Quo: #PharmaHarmed
I have a high tolerance for pain. A former gymnast, I was taught to push through discomfort. Once I landed badly after executing a backflip, yet somehow managed to complete my floor exercise routine. After limping around for several weeks, an X-ray revealed that I’d fractured my heel.
Years later, while wading in a river in the Adirondack Mountains, I stepped on a sharp something-or-other, and practically sliced off one of my toes. Since there were no hospitals in the area, my dangling appendage was reattached at a Boy Scout Camp – without the use of any anesthesia.
Hell, I delivered Tech Support without anesthesia.
Since I discontinued using Klonopin thirty months ago, one of the most troubling protracted withdrawal symptoms I’ve had to deal with has been extreme dental pain.
Sometimes, the pain is so bad, my teeth chatter. It was suggested to me that I might be grinding my teeth together. Or clenching.
I was fitted for a mouth guard, which I wear religiously.
I’ve tried changing my toothpaste, adding a special mouthwash, taking vitamin supplements.
Nothing helps.
When I am still and try to embrace the pain rather than resist it, I feel a circle of burning energy radiating from one side of my face to the other.
Not too long ago, someone told me about Burning Mouth Syndrome (BMS). Doctors and dentists do not have a specific test to diagnose this syndrome, but some experts believe BMS is caused by damage to the nerves that control pain and taste.
(Which makes sense, since extended use of benzos causes damage to the nerves.)
Think for a minute about the last time you stubbed your toe.
Or the time you slammed your hand in the car door.
Or that time you sliced open your finger.
When you’re injured, it’s difficult to pay attention to anything, except your pain.
Pain makes it hard to concentrate.
Hard to take on the responsibilities associated with a full-time job.
Hard to do house work.
Hard to be a mom.
Hard to smile.
People who have known me my whole life know that I was once a happy go-lucky person, who was on no medications and living a full life.
I’m frustrated because I know so many people who have been harmed by medications that we were assured would help us.
We are raised from infancy to believe that people in the white coats know what they’re doing and will make us better.
I trusted my doctor.
These days I know better.
- I know that half of veterans who died from opioid overdoses were also receiving benzos.
- I know that benzodiazepines are not recommended for patients with PTSD or trauma.
- I know that older patients are being transitioned from benzos to other therapies because of the heightened risk for dementia and death.
- I know that as far back as the 1960s, doctors knew benzodiazepines were associated with cognitive impairment. By the 1980s, they knew that benzos caused long-term brain damage, as well as a horrifying withdrawal syndrome.
- I know that it is not appropriate to prescribe benzos indefinitely, especially for insomnia, (and yet it is done all the time).
These days, we have increasing evidence that these mind-altering medications are harmful, and I believe we need to go into reverse and stop this increasing trend of prescribing them.
I never thought of myself as an activist, but I realize that my blog provides me with a platform from which I can share my concerns about psychiatric medications. It is a place where I write about my own plight as well as the collective plight of this group of disenfranchised individuals.
I cannot stand by and let anyone else be harmed.
What I’m looking for now is legal representation: a firm willing to take on the responsibility of a potentially huge class-action lawsuit.
I realize I’m challenging the status quo in taking on Psychiatry, Medicine, big Pharma, even the FDA.
I realize my actions are not going to be popular.
I know I’m going to make people angry and uncomfortable. My thoughts are going to be labeled as unconventional, quirky, and anti-establishment.
People are going to say I’m crazy.
To me, this is Love Canal, Tuskegee, big Tobacco, and Flint Michigan all rolled into one. In each of those cases, individuals went to trusted government officials with suspicions that something just wasn’t right. In each case, individuals were reassured their concerns were unfounded; they were assured that they were safe. And in each case, individuals in power chose to overlook documents that indicated harm was, in fact, being done.
I used to giggle about grammar errors, and now I’m taking on what I believe to be a cover-up of gigantic proportions.
I’m terrified.
Disabled as I am, I’m doing it.
tweet me @rasjacobson
If you believe that you have been harmed by exposure to benzodiazepines, contact me via email at rasjacobson.ny@gmail.com.
Excellent post Renee! I am right there with you, suffering immeasurably. Any support I can give you just let me know. Except money, klonopin stole my career and ability to support myself. I will be following you. Best wishes to you and best of luck with the litigation.
Thanks Karen G. It’s sooooo hard to be uncomfortable and put a smile on my face. I’m sure you know what I’m talking about. But I believe our brains and bodies will heal. It just takes a lot of time. Thanks for your support.
Seven years ago, there was a Citizen Petition to the FDA requesting a black box warning for this class of medication. This was my comment on that petition:
In 1995 I was prescribed clonazepam to treat undiagnosed dizziness and muscle pain. I took the medication until early 2006 precisely as prescribed by my doctors. At that point in time, my new pain management doctor (I had moved necessitating a change of doctors) insisted that I discontinue the drug practically cold turkey. I “tapered” from 3 mg to zero in slightly less than 1.5 weeks after having been on for more than 10 years. I thought that because a doctor had instructed me to do so, that meant it was safe to do so.
I was aware that clonazepam could cause dependence and anticipated a withdrawal of some sort, but nothing dangerous. Two weeks after my forced “taper,” I seized and was reinstated onto the medication in the emergency room to prevent further seizures. I won’t attempt to tell you what my life has been like since then. I will merely tell you what resulted. I lost my health, my career, my life savings, my status as a contributing member of society and I almost lost my marriage. I am STILL trying to taper off of this drug which has caused possibly permanent damage to my central nervous system.
The lack of proper labeling for this class of drugs (benzodiazepines) meant that, as a consumer, I wasn’t able to make an informed decision on whether taking this drug, especially long term, was a wise idea. It also meant that the pain management doctor I had in early 2006 didn’t know that taking me off the medication as quickly as he did was as dangerous as it turned out to be. The emergency room doctors and the other doctors I’ve seen since (with one notable exception) also seem unaware of the danger.
For this reason I urge the FDA to adopt the matters set forth in this petition; to more clearly warn both patients and doctors about the possible consequences of long term benzodiazepine usage and to adopt a black box warning for this class of medication.
Dear LifeLiesWaiting:
Your blog was one of the first I found once I was able to read!
Question: How are you NOW? After 10 years of use and a mishandled cold-turkey? Are you off the benzos? Have you healed? What leftover symptoms do you still struggle with, if any.
And are you willing to fight more?
I wish you strength and courage in this important work!
Thanks Jim. I’m hooked into a bunch of groups now where people are doing important work, trying to gather information about the dangers of psych meds. I’m not spearheading any kind of lawsuit myself, just trying to raise awareness in whatever way I can. Thanks for sticking with me.
It’s soooo cold here. How is it where you are?
Stupid cold. Can-I-just-stay-in-all-day-please cold. But at least it’s not snowing!
PS. I’ve taken Xanax and Klonopin in my time, and I’m so glad the doctors who gave it to me treated them like TNT and nitroglycerin wrapped around an atomic bomb, allowing me to use it only for very short periods when it was strictly necessary.
It’s snuggle weather. Do you know where I can get a snuggle buddy?
PS: Sounds like you have a team of good doctors.
First of all, let’s form a posse to go get the doctor that got you hooked on this vile crap and hang him from a tree. Well, that’s how angry I am about what happened to my sweet, dear friend.
As a general rule, I hate class action lawsuits, because they rarely benefit the plaintiffs – just their attorneys. This may be an exception, though. That may be the only way to address what’s happened to you and, apparently, many others like you. I have no connections or expertise in this field, but you have my moral support – always.
I have a good friend who retired from the FDA a few years ago, and she has NOTHING good to say about that agency. After listening to her, I’ve concluded that it’s staffed with clowns and crooks.
Don’t drop this, Renee, and don’t let any outside pressure deter you. You – and others – were horribly wronged, and you deserve a redress of those wrongs.
I have to admit, I’m pretty furious about all of this – especially once you start to do the research and it’s so obvious that doctors are not being trained about the dangers regarding the efficacy of these medications.
I’m not going to drop this, but I’m not spearheading any huge class-action suit on my own. That would be crazy. I think drug companies expect individuals to just lie down and be quiet. That’s not the way I roll. I’m here to make some noise. I never had a mental health issue until I took that dumb medication.
Just as a general comment, if you want to find out about a new drug someone prescribes, seek a pharmacist, not a doctor to ask. The doctors get their information from a few minutes spent with a detail man whose living depends on pushing his company’s products. The pharmacist has a much broader and deeper education in pharmacology, and he doesn’t derive his living from any one pharmaceutical manufacturer.
That’s soooo true – but even pharmacists are instructed to hurry up and just fill prescriptions rather than stop and speak to consumers. (That’s why them keep pharmacists working and technicians deal with the general public, at least where I live.) And clonazapam wasn’t a new drug: The Beatles sang about “Mother’s Little Helper” back in the 1960s. It’s only recently that people are seeing the longterm destructive effects of these little yellow pills.
Keep us updated; I’m on-board and anyway I can help, I want to be a part of stopping this serious problem. We have to speak up. Louder and stronger than big pharma…
Hi Stephanie.
I’m so glad to meet you. Thank you for your support. I truly believe that if we stick together on this, we can actually make some changes.
I just happened upon your website as I am looking for help to get through this withdrawal. First of all, I am very grateful that you shared your personal story, thank you! I just realized only a week ago that the symptoms I have been experiencing for the past 2 months are related to my benzo withdrawal. I have been on Xanax for insomnia for 3 years. My son suffers with schizophrenia and each time he was hospitalized due to a relapse, I found myself needing a higher dosage to sleep. That is how my dependency grew. In November, I decided to stop taking Xanax and did a 2 week taper. Almost immediately, I had severe cramps that felt like I was wearing a spanx 2 sizes too small! My GI though it was my gallbladder since the pain was on my right side. After CT scan , Ultrasound and HIDA scan, all which came back negative, he said I had IBS. The other symptoms were tingling, first in my hands and feet, then everywhere. Muscle spasms in all different body parts then started. The pain that started on my right side, then moved to my back and left side. My jaw and shoulder became so tight and painful, I could not move my head. Still, I had no idea what was causing all this. I saw a neurologist 2 weeks ago and am scheduled for MRI but now I realize this is all related to my withdrawal. I never could have imagined this! I am so diligent about researching everything for my sons treatment and condition, but never thought to connect what was happening to me to benzo withdrawal. It was only after adding my symptom of crawling body sensations that benzo withdrawal came up on the Internet! Anyway, I can’t help but be so angry at the therapist who not only kept prescribing, but encouraged the higher doses regularly. I did question her occasionally about it and her response was not to worry because my dosage was so low, which was 0.50. I should have asked her before I did the tapering on my own, but again, I had no idea!! Being an advocate for mental health issues, I feel this is something that must be addressed. It is an abuse of trust. Chances are, People who have anxiety and begin taking benzos are not going to research tapering effects once they start. There should be a warning on the label and anyone prescribing should have to tell you this by law. As I am typing this, I have to stop several times because of the pain in my wrists and fingers. I have no idea how long this will last for me personally, but reading other posts, I realize this could be many months or years. Thank you for hearing my story and I will be thinking of all the others out there suffering and praying for a quick recovery for all.
Hi Mari! It’s awful, isn’t it. Doctors need to understand that while .5 mgs may sound like a low dose and may be considered a low dose by the companies that make and market drugs, it is a serious medication that causes dependency issues! If you are on Facebook, look for private benzodiazepine help groups. There are many, and all are filled people with stories just like yours and mine.
Don’t hesitate to reach out to me when you are struggling. I want people to understand that they will heal – if they avoid other psych medications which are all associated with discontinuation syndromes. I’m doing so much better at 30 months out and remain hopeful that the brain and body can heal themselves.
Take care of yourself, Mari.
I don’t know if this is useful or not, but I think, based on this latest stance by the AMA, you may actually find a friend in the organization. Possibly the best place to start your search is to contact your local state rep and begin a conversation with him or her in order to find out if others are also stating concern about this – or similar – situations. IMO, this is why government exists, to protect citizens. Sometimes that protection comes in the form of legal action, and sometimes from legislative action. So, don’t rule out your local government officials as possible allies in this process. In any case, I wanted to share this piece with you, in the off chance you haven’t seen it yet. Good luck to you and if I learn of any firms that may be interested in this, I will pass along (my oldest is in law school and hubs is an attorney. Also, my BIL is a retired attorney who is very active in lobbying efforts in MO to legalize medical marijuana. So, you never know, your case may get the attention it deserves since the legal and political climate currently seems to be right for such information to be presented to the public as well as the government).
http://www.bloomberg.com/news/articles/2015-11-17/u-s-doctors-call-for-drug-advertising-ban-in-position-reversal
Dawn. Thank you for that very nice note. And thank you for your expertise. I hate feeling like a pioneer. And yes, we definitely need to look to some of these troubling SSRI cases to help guide us here. There are many people collecting articles and doing research. The problem is we have obviously all been diagnosed as having a “mental illness.” People don’t understand what that is so we are looked at with suspicion. You know as well as I do that I’m as healthy and sound of mind as anyone else! I may suffer from some anxiety, but who doesn’t?! I’m pretty pissed off about all of this, and I aim to continue to move forward with this.Thank you for your support!
I think you have to start exactly as you have. But one place I would look for allies is in Veteran communities. I wish I could offer more help.
It’s so true. Veteran communities have been gravely harmed by the prescribing of medications. It’s awful! I plan to do my best to reach everyone I can to educate them about the dangers of psychiatric medications in general.
Hi Renee! CT here! Just wanted to check in with you to see how you are doing with Burning Mouth Syndrome. I continue to notice small changes over time with mine. The painful sensations are still present, but ever so gradually getting better over time. I’m less and less dependent upon my mouth guard. But I still appreciate having it when I need it. I enjoyed your post about the NY State Fair. We have a wonderful State Fair here in MN. It is one of my favorite things. I’m so glad you were able to get out and enjoy it!