WARNING:trigger alert. This post could cause fear, anger or sadness.
I just finished watching the movie, The Normal Heart. It took me on a journey of so many intense emotions: outrage that our government didn’t do more sooner, amazement at the courage of the men and women who fought for funding and research, and grief over having to relieve the deep loss of my dearest friend Ken Camenson to AIDS in 1991. We were both 33 when he died.
I am curled up on the couch at the house I am staying at in Tennessee. This is day three of a wave of intense bone and muscle pain, weakness and dizziness and of course, my never-ending tingling. I watched the movie and couldn’t help but wonder why those of us so badly harmed by a prescription drug that continues to be handed out by uneducated doctors to harm more people aren’t rallying together to protest and to educate. As I lie here on the couch with every bone in my back and chest, neck and hands aching, I can’t help but be angry that this illness so many of us have is being perpetrated on others every day. And other than those of us who have lost our jobs, our friends, sometimes our homes and all of our savings because we can’t work due this illness, no one seems to care. I think that is sometimes the hardest part of this horrible illness. No one, other than other benzo sufferers seem to care. There are no protests at city hall. There are no letters or calls to the mayor and the president. There is no civil disobedience. There are hardly any news reports at all about benzos. Why?
Why isn’t the fact that doctors cause this monstrous illness by prescribing a drug that mangles the brain in about 40% of the people who take it newsworthy? How many millions around the world have suffered over the past decades due to these drugs and how many have died because of them? Since I have started this blog I’ve stop counting the ones who died. It was too painful to keep count any more.
Dear Doctors, Dear Friends And Families… we are sick. We are hurting. We are tired. We were damaged by a medication given to us by a doctor we trusted took the Hippocratic oath seriously: First Do No Harm. We don’t want any others to have to suffer through this illness. We want doctors to listen to us. We want them to be educated about the brain damage these drugs cause. We want them to know that many of us are sick for years as our brains and bodies recover. We want to be heard. We want to be taken seriously. Or at least I do. I’m tired of being told by “experts” that withdrawal can’t last this long. I am tired of being told by “addiction specialists” that benzos can’t cause this degree of illness.
We live in the time when communication is instant and far-reaching. Why can’t we get the medical profession to take this illness that they cause seriously? I wrote this blog to help me hold on through an unimaginable nightmare I had to survive because I trusted my doctor and swallowed a pill as directed. Now I write in hopes that one day, my words and actions can help change the prescribing of benzos. I hope that one day enough of us will have genetic testing so we can understand why some of us suffer brain damage from these drugs and others don’t. I hope that one day, there will be no more benzo withdrawal, that people won’t take these drugs and risk the chance of getting sick from them, or dying from them.
What will it take to rally together enough voices to be heard? What will it take to make the doctors listen to us and to understand that they are the ones causing this?
I’m tired of waves of debilitating pain. I am over 3.5 years off of the drug and my body still has yet to totally recover. My 85-year-old parents drive across the country in 5 days. I took over two weeks to drive from San Fran to Tennessee and still it was too much for my body. I have to rest and recover. I continue to have to pay a price for attempting to live a normal life.
I am sad and outraged that this illness, benzo withdrawal syndrome, exists in a world where information rules our lives. By now, doctors should know the harm these drugs can cause. What will it take to get them to learn? Will we need to start litigation? Will it only be when we hit their wallets that they listen, because at least for now, it sure doesn’t seem like we are hitting their hearts. They don’t seem to care about the human suffering they cause. It’s hard to suffer from an illness that no one understands or cares about. We become invisible. It is as if our lives don’t matter. But they do. All of our lives matter.
I wish the FDA and the AMA thought so. I wish too that our friends and families understood better. It gets tiring fighting for a normal life all on your own.
First, I am so very sorry you have been hit once again. I have been so happy reading your up reports and how well you were doing. Yes, this is a horrible illness we all suffer. I’m down again myself. I am weary and I believe I have been damaged and sadder still my husband has suffered as well.
I do feel your anger, your pain, your frustration. This is such a long journey and people abandon us because they simply do not understand it nor do they want to. And those that recover, they want no more contact with it nor do they want to remember the pain. They just want to live their lives again. And there is always the stigma of mental illness connected to these drugs. True or untrue.
But the bottom line is the drug industry and the billions of dollars they are making and the unbelievable power they have. We are victims, we have been used, abused and lied to by the very people we turned to for help. Lawsuits will be useless…our pockets aren’t deep enough for such a fight. Look at all the addiction doctors, addiction clinics, addiction hospitals, addiction therapists, addiction drugs..all very expensive and useless.
And also because there are many who will swear these drugs have saved their lives. I know of people right here in my little town who take these drugs and never want to stop and have had no side affects or tolerance issues with them. They want no part of me or my warnings. Also, taking these drugs is voluntary and there are warnings about usage out there.
I wish I could be more positive about this issue , Jenn, but I simply see no end to this horror. Look at the fight going on in England about all of this now. Look at the new drugs that our FDA is allowing into our Lives against their own doctor filled panels. It’s the money. It always will be. Notice how many commercials on TV are for prescribed drugs. That’s not allowed in England or Europe. But here in the good ole USA….no problem. It’s a sin. It’s evil. It’s sad.
I too have so much anger that I took something for 20 plus years from a respected Beverly Hills doctor, for CFIDS, Fibromyalgia and anxiety, and was actually told I’ll need to take this indefinitely. I had no idea till I got into health problems. I blame myself too as I was always Ms. Research about many things in my life, but didn’t look at Xanax and klonapin as anything bad. They were like my daily vitamin that allowed me to tolerate my conditions. What scares me to death is I stopped cold turkey 9/2014 and STILL am on 2mg Xanax. Yet the amount of pain, sheer terror of this insidious evil drug consumes me 24/7. I’ve been 98% bedridden since 2014 Sept. till now. I feel like I’m on LSD 24/7. The burning in my chest. The tingling and electric current feeling is constant with a doomsday level of anxiety that I never imagined was humanly possible. I’m so weak and in pain I get confused and think, It can’t be this drug. For God’s sake I’m still on Xanax!! What will happen when I taper that??!! I feel that will be my demise.
I too feel, medical professionals should have had me on these drugs very short term and gotten me off. I was just refilled monthly since 1998 WITHOUT QUESTION. I don’t feel human. EVERYNITE I’m scared to death because each nite is a new 24/7 horror movie I’m stuck in. I woke with a new symptom last night. The worse headache pain and nausea jolted me out of a unreal sleep. I’ve had migraines before, this is horrific compared to “normal” migraines. I also wake up drenched in a cold sweat and can’t stop shaking for hours. No it’s not menopause, hot flashes stopped for me a couple years ago. Yes I’m angry, beyond angry at the pharmaceutical companies and my doctors. WE NEED AN ICE BUCKET CHALLENGE! We need awareness about benzos murdering souls. AND YES, my current doctor said there’s no way this is STILL withdrawals I’m experiencing after 5 months??!! I hope all you are doing will help people and bring about awareness and change. I think you need Oprah to interview you on her Super Soul Sunday show. I think you’d be great!. That could be the first step. I am hoping…
AMEN!!!! So agree!! Aww Jennifer ; ( Cruelty 🙁 I’ve been trying to figure out how to get to the media w/this..Then my energy zaps. U r strong in this journey n time u need alot of rest again tho it shouldn’t have to B like this..PRAYERS <3
Dear Jenn, I’m sorry this happened to you and hope the wave passes soon leaving you feeling even better. Just rest and get to feeling again. May God bless you.
Jennifer,
I sure feel your pain and anger in this post. What will it take? What will it take to eliminate the hold big pharma has on our people, docs and government. We know, first hand, the long-term damage of benzos. We also know the damage of anti-depressants, vaccines, statins and others. How do we wake up? I know during my many years of taking the xanax I continued to fight my doc on any shots or other drugs like a statin. I was absolutely aware…just didn’t realize what the xanax was doing and what I would face getting off. It is strange. I now see that I was worse while on it than now. The insomnia was just as bad then as now. The drug was doing nothing. My mind was a total mess. It is so much better now. I am in month 7 of withdrawal.
Perhaps we need to find a few docs who understand this. I hate to sound defeatist but sadly a lawsuit would probably do nothing, How can we go up against big pharma. The key seems must be enlightening the people about all drugs before they take them. Alternative media does this but until mainstream media will, I don’t know how we would awaken the masses.
I am so sorry you continue such extreme suffering after all these years. It is amazing the havoc these benzos work. I was in therapy for a couple of years. I “thought” she was good. She would calmly say I should get off the xanax. That was it. Never stressed how much it contributed to my faulty thinking nor how difficult to withdraw. I doubt she really knew. I have been considering writing her a respectful email for her consideration.
I admire you setting out on this journey! I have been putting off travel for obvious reasons. I am 65 and beginning to feel I must just do it. Shooting for some trips in the spring.
Be safe. I am in Las Vegas if you find yourself this way. Would love to meet you.
Blessings,
Judi
Hi again Jenn, Just want to add a few more comments. Try not to get too discouraged. How I look at things is that the weak gaba receptors cause the pain because they don’t calm down the body enough quite yet. Try to look at all the healing you have seen happen and know that it will keep improving even though it’s so slow. Also, I’d love to see you, but you may want to reconsider Michigan as it’s so cold here, roads are slippery and most here want to head somewhere warm. Hit the beach instead:) I would if I could. You’ll feel better soon. Stay warm and happy.
I went to my Neurologist last month to let him know of the tolerance and the awful side effects of cloneazepam I was prescribed to help with spasmodic dysphonia (vocal tremor). I discussed this first with his resident who seemed very open to my side effects and tolerance and eventually the withdrawl symptoms. However, the doctor, a University of Rochester physican, had no time or patience to hear me.
I have been off benzos for 7 months after using them for 4-5 years. I also work for a homeless shelter and recovery program in Rochester, NY. Only the men in recovery seem to understand the dangers!
I hope you can add Rochester, NY to your list of travels. I would love to meet you and will message you.
Laura
Jenn,
You have given me personally as well as so many others the hope to keep fighting, the courage to keep going, and the faith to believe it can happen. Your suffering has been long your pain unquestionably difficult. However, your resilience to life and optimistic spirit to setbacks and disappointment are breathtakingly beautiful and moving . You have made many laugh cry and shout for joy. Take the time you need for I know that before long you will be moving again forward in the direction of life lived not just endured. Sending prayers!
Lorie thank you for your sweet words. I thank everyone who has reached out via comments or email. I am leaving tomorrow, weather permitting, to drive to see my parents in Georgia on our farm. I’ll be with them for awhile, then on to Florida to stay at the beach of my childhood with them. We go fossiling at Ponte Vedra beach. It’s a family tradition my mother started many years ago. I am looking forward to seeing family, the farm and Fla. My pain is lessening. I am grateful for that. This wave will end, just like all of the others before it.
I’ll be visiting benzo buddies in South Carolina, Georgia, Florida and Alabama before too long. Then, I’ll slowly start back across the nation and take my time visiting benzo friends in the southern states.
I’m grateful I had the peace and quiet here of this amazing home. It was just what I needed. I’ve started writing The Benzo Withdrawal Survival Handbook. I’m hoping to have it ready for publication before too long. It will hopeful help others who are starting down this journey, but I hope too, that doctors and others in helping professions will read it and become educated.
Thanks again. I care so much about you all. We have become family because of this shared journey. Jenn
On Mon, Jan 26, 2015 at 8:26 PM, Benzo Withdrawal Help wrote:
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Jennifer… Sadly, it’s not just about pharma/ money as most people think, although that is a big part of it… The biggest part of this, I believe, is that these types of drugs are not only allowed, but encouraged by the group of individuals in charge (the oligarchy) that really pull the strings… They must maintain power/ control over the masses, and these drugs, along w many others, are a huge part of that… Of course the residual sickness/ injury/ death this causes to so many is also part of the overall population reduction plan, as well as pad their bank accounts… So long as these types of psychos are in charge, nothing will change… The best thing we can do IMO is spread awareness w our stories, and SHARE SHARE SHARE about the dangers of these drugs… Alternative media sources are our best bet, bc of course these individuals also control the media, so this is why it’s never in mainstream media publications/ TV *peace ❤️❤️❤️❤️❤️
The fact is that for those of us suffering the horrors of benzo withdrawal the experience is akin to being trapped in a real life episode of the Twilight Zone .
I am not a conspiracy theorist but the design is such that it is practically bullet proof in its perpetuation. Even if you were successful in bringing it to court what Psychiatrist , other than Dr. Peter Breggin, would ever admit that there is such a thing as being psychiatrically symptomatic without being mentally ill ? There would be an infinite supply of Psychiatrists refuting the notion that a prescription drug could cause a perfectly sane person to become psychotic, agoraphobic, suffer black depression ,loss of memory etc,…. for years on end.. Everyone from Congress to the FDA to the pharmaceutical companies to psychiatrists to GPs has a vested interest in making sure these drugs are not eradicated.
I am every bit as outraged as you that this has happened to me and countless others while at the same time being perfectly legal.
According to Gwen Olsen, a former pharmaceutical rep, these companies are notorious for strategically winning lawsuits and penalizing the plaintiff .
There would almost have to be a ‘Think Tank Like ” strategy put into place to dodge all of the bullets used to shoot holes in our claims. A campaign to educate the professionals working with those afflicted might help to beef up awareness and the reality of the toxic effects and symptomology these drugs have the potential to cause.
I have educated my therapist, acupuncturist ( a doctor) and Reiki therapist with documentation and videos. They no longer have any doubts.
I applaud you and thank you for everything you have done. I hope you recover quickly from your latest setback.
Jennifer, I’m sorry you’re having such a bad wave. It’s too bad you can’t enjoy your time in TN & I certainly sympathize with feeling that horrible while away from home.
I too am profoundly angry that this has happened to me& others. I’ve been suffering for 3 years now. I have lost so much. What makes me the most angry is that I can not find a dr who knows anything about benzo wd or who is willing to do any research about it, even when I give them the best articles to read.
I was started on 40mg of valium by a ARNP. She retired & I transfered care to another dr who kept prescribing it. I was sent to a pain clinic & that dr kept prescribing it. I saw 2 psychiatrists, both kept prescribing it. This went on for 5 years. Then I saw a different dr @ the pain clinic 1 month & he made me stop ct not only from the benzo but from 900mg of seroquel & 180mg of oxycontin. I couldn’t get a bed in a hospital right away & he wouldn’t even give me a couple days of meds. I don’t know why I didn’t die. I went into status epilepticus while home alone. I don’t know how long I’d been seizing by the time my husband came home & found me. I was taken to the ER & the dr said “maybe you came off the valium too fast”. Ya think!?! I was in a rehab bed for 3 days, then sent home. I saw a different dr each day. Not one of them said anything about prolonged benzo or seroquel wd. 2 months after the ct, I had almost every sx of benzo wd & then the twitching started. I was scared I had a brain tumor ir something & went to the ER. They did some tests & sent me home. Over the next 6 months I saw several neurologists who just kept saying that it wasn’t a neurological problem. I was sent to a psychiatrist who told me I had conversion disorder & who wanted to put me on olanzaprine. I didn’t take it. I didn’t know what was wrong with me but I knew it wasn’t that. I’m so glad I went with my instincts & didn’t take that! It could’ve killed me since I was in benzo wd.
Over these 3 years, I’ve seen maybe 30 drs. Not one of them is educated about benzos. None of them believe me about what is going on. The last dr I saw stopped my benzo ct again with 5 mg left to taper because I had a manicure (1st one since before my ct, done by my daughter while I was in bed) & if I could get my nails done I must not be suffering to much. And it’s only 5mg, there should be no problem stopping it. As you know, there have been huge problems. I’m just too weary to try to find another dr & finish my taper. I just hope that there won’t be debilitating sxs that persist indefinitely.
I agree; we need to stand together & get the word to drs & politicians about the dangers of benzos. It is going to be a tough fight. Drug companies get carter blanche on psych drugs & make billions of dollars on benzos alone. Once I’m well enough I am devoting my life to getting benzos regulated, educating drs & the public, trying to get some of the worst benzis off the market; anything I can do. But it will take a lot of people doing a lot of work to make a difference. I am in no shape @ all right now to do anything. I think some people are so scarred by the wd that they can’t revisit it. But there really should be enough of us who are healthy enough & have the time to work on getting some change in benzo prescribing.
I really like the benzo forum idea & am very interested in joining once I’m able. we really must do something to help others. A horrible crime has been perpetrated against us & no one cares, no one believes us & it’s happening to others every day. I will be watching your blog & my other benzo sites & as soon as I’m able, I’m willing to work with other benzo survives to make changes. Until then, I just have to hold on 1 day @ a time as best as I can.
I hope you get through this wave shortly & are able to get yourself home.
Safe travels.
Firstly, Jenn, let me say that I am so proud of and happy for you that you are able to make this trip. You have come such a very long way in your healing and that is so encouraging!!!
As I continue to struggle to get off the last of Klonopin, I recently had a DNA test done to see how I metabolize medications. Did this in hope of helping in some way. The doc that I did this through uses both conventional and alternative treatments and even though he has not to this point been able to help in any substantial way, I thought perhaps this testing might enlighten the both of us to some degree. When I went in for my results, not only was he confused as to how to interpret the report (silly me – I thought he and his staff had received the training to do this), we then proceeded to once again visit the discussion of how I have been experiencing horrific symptoms from trying to come off the K. He remains astonished. Said that in his 25 years of practice and having many patients on K that never – I repeat – never – has any of them said they felt bad when quitting K. He is vehemently against Xanax and Lorazepam but views K as safe. Even safer than coffee or sugar! Said that if I was his sister, he would tell me to continue to take K forever if necessary.
He then said – have you considered you are going through menopause? What?! I am 65 years old. Had a complete hysterectomy 21 years ago. Yes, I have had a horrible time trying to get my hormones balanced since then but as many docs have told me – you went through menopause immediately after surgery.
As the visit began to wind down, he admitted that he has no idea how to help me. I am glad that he was honest in that. But I remain amazed at how many doctors that are licensed and prescribe these meds for many, many years to their patients say they have NEVER had a patient who had this problem. As I mull this over in my mind, I wonder – have they all had ONLY patients who didn’t have difficulty quitting benzos or did the patients who did have problems simply leave and not let the docs know. ???
So, once again, I add yet another “professional” to the list of clueless.
I, personally, do not see how this is going to change unless practitioners themselves experience the horrors of withdrawal.
Praying for your continued safe travels and that you will experience much joy and peace during this remarkable journey you are on.
Blessings and Hugs!
I think it is almost unheard of for a doctor to ‘Google” a drug they are prescribing as a means of obtaining alternative information about the side effects and potential damage of long term use. It is as if they have been brain washed into believing that the Pharmaceutical Companies are the only ones to be trusted for information. Why on Earth would you EVER trust the WOLF who is guarding the hen house? It completely boggles the mind.