I will be 2 1/2 years off on the 23rd. It’s hard to wrap my head around that much time in recovery from a medication that the doctor told me would “cure” me and “help me.” I look back on the journey and I am amazed and grateful that I survived. I am grateful that I am (hopefully)) nearing the finish line at the Good Health marker.
I still have symptoms. Burning, tingling, ear ringing, weakness, fatigue, bone, nerve and muscle pain, twitching, feeling as if I am being pulled down, and the lovely boaty sensation. I find myself feeling as if I am being crushed from the hips down. The mental symptoms from withdrawal are better. I still have some remnants of the benzo withdrawal classic symptoms of looping thoughts, and ruminating over things. I can tell when it is wd, and not my normal funky negative thinking. There is a much different feel to it. As I type these words, I have intense hip pain deep in the sockets and electrical feelings in my legs. The bee sting feeling on the bottom of my feet kicked in too, just for fun. *Sigh.*
But…. overall I am better. I am thinking more and more about work. I am able to sustain enough focus to plan. I have been accepted to teach a class at Stanford this spring, the neuroscience of creativity. (A one day workshop.) So, I am most defiantly getting better. Would I like to be more healed? Of course I would.
I am no longer feeling hopeless though. The depression has lifted for the most part. On days it sets in again, I am able to discern that it is simply my brain in healing mode from the benzo. I no longer worry that I will be a train wreck for the rest of my life. I may not be chugging along the tracks at full speed, but I am not derailed in a zillion twisted pieces anymore.
What helps me the most now is my gardening (thank you god that I live in a Mediterranean climate even though we are expected to see freezing tonight) service to others, working the 12 steps, and understanding when I get hit with sx, that I can take care of myself. I go for a long walk, plant, weed, or simply curl up in bed with my laptop and watch a movie. Before too long, the sx pass, or change to another set of sx.
In the almost 38 months I have been battling withdrawal, starting with my taper in October 2010, I have never had a day of zero sx. I dont know if my tinnitus will ever heal, so I may always have something to remind me of wd the rest of my life. (Like I could ever forget the horror.) I have learned to live with what I still suffer from. The waves no longer feel like tsunamis. I’ve worn the wet suit a long time. I’ve learned to surf and to go with the flow. Matt Samet said he had “foregrounded” wd sx for the first three years. He said he ignored them for the most part. I never understood how he could do that when it was earlier in my recovery. Now I understand.
I don’t have the glowing story (yet) that Don (madeinpa) writes about here. But I do know I am a much stronger person. I feel that I can accomplish much in my life with god’s help. God (as I understand god) has come this far with me. I doubt god will suddenly stop being there.
That’s my 2 and a half year mark update. I honestly thought I would be done with withdrawal long before now, but…. here I go, pulling on my wet suit, riding the waves, watching the shoreline, and praying for a window that turns into a door I can walk through and be done with all the nonsense.
Hang ten everyone. Keep the faith.
Jenn
P.S. please sign the petition to the current FDA commissioner. I will do my best to get media attention to our plight. Please share the link in any way you feel comfortable. Thank you! http://www.change.org/petitions/fda-ban-long-term-prescriptions-of-benzodiazepines If I can at least get the right people to start thinking about this topic in my lifetime, I will feel I did my part in making change happen. Change that so desperately needs to happen.
Thanks Dr Jennifer,
May I ask you about anxiety? It seems everytime I go out to the shops it hits me big time and leave me is a very bad shape. I try to accept it but it is no mental.
Did you have something like that?
Buni
I am sorry you have this. OH MY did I have it. I can giggle about it now. But when I was in the thick of it… YIKES! This has gone away now. I can even handle the xmas crowds in small doses. But it wasn’t always like that. I used to dread going to the mall. My whole body felt…. well, I don’t even KNOW how to describe the anxiety in withdrawal. It is so uncomfortable and it was unlike my old anxiety I used to have before Klonopin came into my life. It was so much worse than ANYTHING I had ever experienced. I can assure you that mine went away, and I know others who had this and theirs went away too. In time. It just takes so much bloody time.
What helped me was to keep going out and feeling the anxiety and even though I dreaded it and hated it, I kept going. I say this helped me because I didn’t get the overwhelming agoraphobia some people get in wd, and I accomplished my shopping tasks, even though it was draining. I pushed myself often as I didnt want to give in to wd and lose the ability to do normal tasks. I lost the ability to work or to drive to many places (still having trouble on the freeways) but was damned if I was going to give up getting out in public in a mall or grocery store. I did have to leave a few times when it was overwhelming. But I would go back the next day. Get back up in the saddle so to speak.
Hold on. It WILL get better.
Thanks Dr Jennifer. I am very discouraged at the moment.
Oh Buni, I know. I was the queen of discouragement. I felt hopeless for so long. I dreaded going to sleep at night because I knew I had to wake up and face another day of hell. Sheer fucking hell. No apologies for the swearing either, cause it was indeed that awful. But little by little I got my life back. You will too. Just hold on. Distract. On bad days I went outside and dug holes. Filled ’em up. Dug them again. On days that were worse than bad, I simply sat in a chair outside and held onto the arm rests. I knew if I held on, and didn’t get out of the chair, I was safe. I couldnt off myself sitting holding chair arms. 🙂 Buni, I know how bad it can get. I really, really, really do. But I also know it slowly lifts. Life lapps again at the shore. A gentle coming and going of normal. And then one day, it’s going to fill up the whole shoreline. Never recede. Do what you need to do to stay safe. Cry, scream, throw rocks at god… whatever. (I used to tell God he could take his cock out of my ass… hows that for blunt honesty in God’s face! Rude and crude yes, sincere yes!)
Just stay safe. Your brain is healing even as you read these words. You can’t stop it anymore than you can stop your liver from doing its function. Or your kidneys. Your brain wants to be healed and whole and it is hard at work right this very moment, cobbling your receptors back to working conditions again. You’ll see. One day you will write me a success story and you too will giggle about your crazy days you are having now. 🙂
I look forward to reading that letter.
Yes, this needs to STOP and I truly hope something can be done with all these docs. that keep giving the benzo family drug to patients..its a horrible family ofrugs! Thank you Jenn for all your thoughts, encouragment and trying to put a stop to this!!! 🙂
It does stop. I’m old :-), a year off almost a lifetime of benzos and its stopping,
It really is. I even went to the theatre this week. I could never have contemplated this just a few months ago. When it stops it brings a whole new lease of life. The road is still bumpy, the progress is still forwards and backwards but I feel very different and very positive. Life is normalising after two years of severe tolerance, a cold turkey and a year off. Even my husband is so much happier.
I just want to give support to everyone still enduring this terrible syndrome. It can and does pass, whatever our age, time on drugs or even type of Benzo. Thank you Jenn for an excellent petition which should be signed in the UK as well. Even though our doctors are supposed to be enlightened they’re not and can do untold damage to their unsuspecting patients.
So glad you’re doing better. I’m 9 months off and having terrible anxiety and gastric problems Felt better the first 4 months. The last 5 have been hell. Enjoy your post so much. So very happy that things are improving for you. Hoping to see some improvements myself soon.
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Dear Jenn.
So wonderful to see your post. You sound great, love your analogy of the wet suit. I signed your petition yesterday. Hope you continue on your recovery journey everyday. We are healing everyday in every way….I believe this even on the bad days when the benzo thoughts try to do me in. Big hugs to you.
Jenn, You are absolutely right! We do need a change, and its any more ways than one! Starting with this whole health care system, the whole thing is all about ” take these pills” you probably know what I mean when I say, I’m sick of being told by the Drs..” I’m going to write you out a prescription and etc…” years ago I use to think that going to the Dr. meant, you was going to go see someone that had your best interest at heart, but all that happens is, ” take this and come back in two weeks, then another two weeks, and after that one month.. I could go on and on with this, but I wont.
The benzo withdrawal issue is horrific and from my experience Drs.. seem to think and say that it really isn’t that rough, and what you’re going through is impossible from benzos.. I just remember so well, over ten years ago, I finally mustard up enough courage to go see a Dr. about my anxiety issues, little did I know that I was taking a street drug that gets abused on the streets. I never was on drugs for recreational purposes and just put my trust that a Dr. knows whats best for me and my condition.. WAS I EVER WRONG!!!! The benzos at first seemed to help some and with little side effects, so my Dr. just kept writing a refill for every month. I then got to the point to where I didn’t feel like I was taking anything anymore, the dosage had lost it effect, and so I thought, I don’t need this anymore.. a fews days passed and I was feeling bad, and then two weeks later, I was feeling like I was dying. I still didn’t know that absence of the drug was doing this. Things were beginning to happen to me that just seemed impossible that benzo could have been responsible for. I went to different Drs. telling them about my symptoms and they were so many. They ran so many test and I spent so much many just to be told that everything was fine and the test are normal, none of them could not tell me that maybe its withdrawal from benzos! So I was suffering in despair, my family all thought I was just making up all of this, talk about feeling in solitude!
My life was beginning to fall apart, I lost my job, income, and had to move somewhere else.
Still suffering with all the horrific withdrawal symptoms, I’m sure you know them quite well.
Six months later, life getting worse, couldn’t get any answers to why I was in pain and feeling like this, until one day I was offered to come back to work where I use to work, I was really needing o work, I had a family that was counting on me, so inspite of how I felt, I accepted the job to go back to work, I had insurance again and went to another Dr. and told him that I wanted to get back on my Klonopin again, not knowing that it was the reason for all of my pain and suffering. He gave me the prescription and after I got it filled at the pharmacy I then took one, after an hour, I suddenly started feeling better and the pain of the withdrawal was starting to ease, just after one dose, then that’s when I realized that it was the drug causing all of this,and that I had a physical dependence with Klonopin. This is only just a small part of my whole story with this benzo thing, but I just wanted to share a little bit of my experience and will gladly sign the petition about the long term benzo problem!
I truly hope that you and everyone of us will come out of all this victorious. Take care!
PS- Forgive my bad story writing skills, but benzo withdrawal makes things that once was simple to do, a mountain to climb!
Buni
I am also having bad anxiety every day. I shake from it, I cry all the time. I wish I had some good advice about dealing with it but I don’t cope well, and everyone says the same thing….accept it, roll with it, don ‘t let it take over….and only time will change things. I read success stories, listen to bliss’s coping tapes….but when I’m in the midst of it, nothing seems to help. I pray that I will be able to cope better, accept where I am now. And we all have to believe, as Jenn says, we are healing no matter how we feel. I hang on to that.
I hope you are doing better and coping. This is a wonderful blog to be a part of, caring and supporting people.
Best wishes, Karen
Rosalind, I saw that you commented on the petition, and I was right after you! Thank you for offering your encouraging words. You went to the theatre?! As in a live performance or a movie? Either way, it’s amazing! Right now, I can’t imagine sitting through the loud sound and the bright lights – but I know it will come.
Dr. Jenn:
You wrote about your symptoms. I know that you experienced a horror when you went c/t so long ago. I have many of the same symptoms that you describe now at 5 months. I hope that we are both getting to the end of our healing. My doctor tells me that she has NEVER treated anyone who hasn’t healed. She says it usually takes 12-18 months. I get so scared when I read what you (and so many others) are having to endure.
Like you, I continue to suffer from weakness, fatigue, bone, muscle pain, twitching, feeling as if I am being pulled down, and the delightful “boaty sensation.” I also have something weird with my eyes; they itch all the time and my vision feels strained.
I continue to hope that I’m feeling a lot better in August, my 1 year mark. I can’t lie: I’ll be very disappointed if that date comes and goes and I’m still feeling like this. Still, when I think about how far you have come – from hospitalization to now being accepted to teach one day a week…well, that’s a lot of healing that has occurred.
I’m guessing your symptoms have become more mild than they once were, yes? I pray that we are all sprinkled with some of Don’s magical healing dust, sooner rather than later.
It was a live performance Renee. Felicity. Kendal and Simon Callow in a translated French comedy called ‘Chin Chin’. I was fine until the interval when slight anxiety hit but it passed. I’m now pushing myself to do more and regain my happy, former life. It was actually fairly quiet and I had to strain to hear! I think the benzos affected my hearing so hope it will recover. It may be age deterioration though.
So keep positive we do get our lives back eventually.
Oh yes, the magical healing dust. I think I left most of my supply back in Never Never Land (with Tootles’ lost marbles) and could only bring a little back in the form of hope – a very powerful and enduring remedy. But it very often must be sprinkled on us by others. You have come to one of the right places to get it.
August is also my “anniversary” month. Maybe that will have a little magic of its own. We can always hope.
Don
Thanks Karen. It is very difficult to keep my hope up. High anxiety and feeling very sick every day. I cant follow a normal conversation without freaking out.
I guess one day at a time.
All the best.
Unfortunately, its virtually impossible not to go through extreme discomfort from long term benzo withdrawal. I really don’t understand entirely, why it takes so long to recover from a drug that was suppose to help us.
I ‘ve had horrible times with the benzo withdrawal over the years and still going through it now, only this time tapering, but it still is so difficult!
Everyone will tell you those things, such as move on, roll with it etc.. because they are not going through it and have no idea how severe it is! Try switching to a longer lasting benzo, such as valium, its half life is much longer than most and therefor makes withdrawal a little easier.
Even though there isn’t too many people around you going through what you are going through, you can rest assure that there is so many of us in the world that are. Its so hard being patient through withdrawal because it feels like it will never end, mine is far from over, but I look back at the progress that I have made, and that gives me hope.
Forums like this one, its a big help because it helps me see that all these benzo withdrawal issues just aren’t in my head, because there is many others really suffering also.
I hope that your symptoms begin to calm down soon!
Side Effects
From quirky to serious, trends in psychology and psychiatry
by Christopher Lane, Ph.D.
Brain Damage from Benzodiazepines: The Troubling Facts, Risks, and History of Minor Tranquilizers
Researchers have long-known that benzodiazepines can cause brain damage
Published on November 18, 2010 by Christopher Lane, Ph.D. in Side Effects
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Last week, Britain’s Independent newspaper published a bombshell for psychiatry and medicine: the country’s Medical Research Council had sat on warnings voiced 30 years earlier that benzodiazepines such as Valium and Xanax can cause brain damage. As 11.5 million prescriptions for these drugs were issued in 2008 in Britain alone, my post on the revelation focused on the consequences of the cover-up for the millions of people affected.
Given the feedback I received from numerous recovering patients in Britain and the States attesting to their profound difficulties quitting such medication, as well as their continued impairment from the drugs many years later, I want to retrace the drugs’ controversial history, to help explain why the suppression of evidence about their side effects is deservedly national news in Britain, and why it should be here in the States, too.
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Concern about the adverse effects of this group of drugs dates to the 1970s, when vast numbers of people began taking them for stress and anxiety. Once the most-popular minor tranquilizers in Britain, the U.S., and much of Europe, benzodiazepines (“benzos” for short) include such household names as Valium, Xanax, Librium, Ativan, and Klonopin.
Between 2002 and 2007, the number of U.S. prescriptions for them grew from 69 million to 83 million. Their popularity trailed off in the 1980s and ’90s, when Prozac, Zoloft, Paxil and other SSRI antidepressants outsold them as “blockbuster” drugs—so-named because their annual revenues surpassed $1 billion. But benzos actually made a comeback earlier this decade, due in part to the highly successful marketing of Xanax for more than just Panic Disorder.
With SSRIs represented in the 1980s and ‘90s as well-tolerated and nonaddictive, as distinct from the extensive, well-documented side effects of benzodiazepines (including pronounced behavioral abnormalities and a serious risk of addiction), the resurgence of prescriptions for benzos in the early 2000s is not only striking, but a serious concern.
Back in 1975, when benzodiazepines were widely touted as a wonder drug for anything from chronic anxiety to mild stress, 103 million prescriptions were issued for them in the U.S. in that year alone. The following year, David Knott, a physician at the University of Tennessee, voiced strong concern about short-term memory loss among such patients, warning: “I am very convinced that Valium, Librium and other drugs of that class cause damage to the brain. I have seen damage to the cerebral cortex that I believe is due to the use of these drugs, and I am beginning to wonder if the damage is permanent” (qtd. in Whitaker 137).
Two years later in Britain, Malcolm Lader, an expert on benzos at London’s Institute of Psychiatry, called them “the opium of the masses” because of Britain’s very high prescribing rates, a pattern that correlates with Europe and the States. In Britain, a country with a population now barely exceeding 61 million, a staggering 32 million prescriptions for the drugs were written in the early 1980s.
“We knew from the start,” Lader explained on the 2002 Discovery Channel documentary In Pills We Trust, “that patients taking markedly increased doses could get dependent. But [we] thought only addictive personalities could become dependent and that true addiction was unusual. We got that wrong. What we didn’t know, but know now, is that even people taking therapeutic doses can become dependent.”
In the States, too, Lader spoke and wrote consistently about his concerns over long-term use of benzos. As Ray Nimmo, editor and owner of http://www.benzo.org.uk, pointed out to me, author Vernon Coleman noted in his 1990 book Life without Tranquilizers: “At a conference at the National Institute of Health in Washington, USA, in 1982, a British Professor of Psychopharmacology, Malcolm Lader, reported that brain scans done on a small group of patients who had been taking diazepam for a number of years had produced evidence suggesting that their brains had been damaged. Although warning that his preliminary findings needed more research, Lader pointed out that the work he had done suggested that the brains of regular benzodiazepine takers were damaged and shrunken when compared to the brains of people who had not taken benzodiazepines.”
Then the controversy truly ignited. In 1989, one of Lader’s colleagues, renowned anxiety specialist Isaac Marks, published in the Archives of General Psychiatry a critique of then-recent reports about Xanax and its “efficacy” in treating panic disorder (his quotation marks). Marks, with ten other eminent colleagues from comparable research institutes in France, Germany, England, Spain, Portugal, Brazil, and the States, drew yet more attention to “serious adverse effects” of the drug that only “become apparent later,” he asserted—long after most clinical trials had wrapped up. He also wrote of worrying signs of brain atrophy among long-term benzodiazepine users, including “cerebral ventricular enlargement” (Marks 669).
Marks cited, among his references, Lader’s 1984 essay in Psychological Medicine, “Computed Axial Brain Tomography in Long-Term Benzodiazepine Users,” which stated: “Definite abnormalities were reported by the radiologist in 3 [of 20] patients . . . who had taken benzodiazepines long-term. The abnormalities comprise ventricular enlargement, widening of sulci, Sylvian and interhemispheric fissures” (Lader 205, 203).
Although Lader and two other colleagues added that “the clinical significance of the findings is unclear,” they nonetheless observed: “The benzodiazepine users, as a group, had larger ventricle/brain ratios than the controls . . . About half of the patients’ scans had positive ‘cortical scores’ as compared with only a quarter of controls. This is surprising, in view of the relatively young ages of most of our patients” (Lader 205).
In 1983, Robert Whitaker adds in his 2010 book Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America, “the World Health Organization noted a ‘striking deterioration in personal care and social interactions’ in long-term benzodiazepine users” (138). More recently in 2007, he continues, “French researchers surveyed 4,425 long-term benzodiazepine users and found that 75 percent were ‘markedly ill to extremely ill . . . a great majority of the patients had significant symptomatology, in particular major depressive episodes and generalized anxiety disorder, often with marked severity and disability” (Whitaker 137).
Marks’s 1989 critique of Xanax focused on two studies that Upjohn Pharmaceuticals (maker of the drug) had funded in the 1980s. Led by Cornell Medical psychiatrist (and later chief of the Federal mental health agency) Gerald Klerman, the studies—also published in the Archives of General Psychiatry—minimized or completely ignored the longer-term side effects that affected more than half the patients involved. The side effects included not only signs of sedation, but also ataxia [uncoordinated movement, owing to neurological dysfunction], and fatigue. Marks conceded, “The cerebral ventricular enlargement reported in patients with anxiety/panic disorders who were long-term benzodiazepine users could be due to the disorder or to other factors rather than to the drugs, but wisdom advises caution” (Marks 669).
When I interviewed Marks in November 2005 for my book Shyness: How Normal Behavior Became a Sickness, on the creation of social phobia/anxiety disorder and the way that Paxil was marketed as its best pharmaceutical remedy, he told me about a Boston-based conference that Upjohn also had funded on Panic Disorder. At the conference, Upjohn’s CEO got up and literally declared, in his opening remarks: “Look, there are three reasons why Upjohn is here taking an interest in these new diagnoses. The first is money. The second is money. And the third is money.” “They were quite upfront about it,” Marks marveled to me, “and they were exceedingly successful at it for the first six years” (qtd. Shyness 74).
Marks’ and Klerman’s dispute in Archives of General Psychiatry soon moved to and escalated in the pages of the British Journal of Psychiatry. Indeed, it became something of a transatlantic showdown, with Marks strongly implying, in the words of commentator David Healy, that “any apparent efficacy of alprazolam [Xanax] resulted more from statistical manipulation on the part of Klerman and colleagues than from a genuine efficacy of alprazolam” (Healy 196). Healy adds that Marks put some of the ensuing “hostility” down “to the fact that, by 1990, a growing number of American psychiatrists were only reimbursed for treatment if that treatment involved prescribing” (197).
Still, a sharp uptick in reported problems from Xanax and other benzos in several countries finally obliged the American Psychiatric Association Task Force in 1990 to produce a table listing withdrawal symptoms from the drugs in three separate categories: “Very Frequent, Common but Less Frequent, and Uncommon.” “Very Frequent withdrawal symptoms included ‘anxiety,’ ‘agitation,’ and ‘irritability,’ notes Peter Breggin; “Common but Less Frequent withdrawal reactions included ‘depression’ and Uncommon withdrawal reactions included ‘psychosis,’ ‘confusion,’ ‘paranoid delusions,’ and ‘hallucinations.’ Noteworthy,” he continues, “are the large numbers of citations used to confirm the findings listed in the table. The task force also confirmed that these withdrawal symptoms “may persist up to several weeks (occasionally for months).”
In the early 1990s, too, Upjohn finally admitted: “Certain adverse clinical events, some life-threatening, are a direct consequence of physical dependence to Xanax. These include a spectrum of withdrawal symptoms; the most important is seizure . . . studies of patients with panic disorder showed a higher rate of rebound and withdrawal symptoms with Xanax…. Other symptoms, such as anxiety and insomnia, were frequently reported during discontinuation.”
“The ability of patients to completely discontinue therapy with Xanax after long-term therapy has not been reliably determined,” the drug maker continued. “Withdrawal reactions may occur when dosage reduction occurs for any reason . . . withdrawal symptoms including seizures have been reported after only brief therapy with Xanax at doses within the recommended range for the treatment of anxiety. . . . Death has been reported in association with overdoses in association with overdoses of alprazolam by itself.”
Where does that leave us, roughly a decade later? From Australia to Nepal and Britain to the United States, benzos are recognized as fueling powerful cravings among drug addicts. That’s less surprising, perhaps, when one hears that Professor Lader declared, in a 1999 interview on BBC Radio 4, “It is more difficult to withdraw people from benzodiazepines than it is from heroin. It just seems that the dependency is so ingrained and the withdrawal symptoms you get are so intolerable that people have a great deal of problem coming off. The other aspect is that with heroin, usually the withdrawal is over within a week or so. With benzodiazepines, a proportion of patients go on to long term withdrawal and they have very unpleasant symptoms for month after month, and I get letters from people saying you can go on for two years or more. Some of the tranquilliser groups can document people who still have symptoms ten years after stopping.”
According to Britain’s All-Party Parliamentary Group for Involuntary Tranquilliser Addiction, which has strong support among politicians, prescribing statistics in the UK point to “the estimate of 1.5 million involuntary addicts” to the drugs in that country alone, given that in 2008 “11.5 million prescriptions for benzodiazepines” were written in Britain, and roughly ten percent of benzo users become addicted to the drugs.
Given this troubling, well-documented history, responsibility dictates that I end on a strong note of caution. Patients who are concerned about the drugs’ adverse effects should NOT terminate their treatment abruptly, but should instead taper their dose carefully and very gradually, over a course of several months, to ensure their own safety. Professor Heather Ashton, a British psychiatrist who runs a renowned clinic on benzo withdrawal, supplies important safety information about recommended tapering here.
In light of this medical nightmare afflicting so many patients in so many countries, the fact that the British Medical Research Council, the nation’s funders of medical research, sat on key information attesting to the drugs’ risks thirty years ago is not just unethical, but nothing short of scandalous.
Thank you, Jenn, for this encouraging post. Your strength and perseverance amaze and inspire me not to give up.
I do so hope all of you here are having some better days. Have had a couple more functional ones myself this week which I am most thankful for.
May I ask a question? Have any of you experienced muscle wasting/loose skin/very dry skin during this w/d process? Can it be restored? Are any of you able to exercise?
Altho I am not bed ridden, I have much fatigue and little stamina so do spend a lot of time sitting. I’ve also lost about 25 lbs. since I began tapering in January of this year. Add in another 30 lost prior to that which I had gained from being overmedicated, it’s quite a few pounds. I had always been somewhat of a small person until then and could not believe how much weight I had added on.
I look at myself in the mirror and my body looks like someone many decades older. It is quite disturbing.
You all remain in my thoughts and prayers.
Blessings,Jean
Thank you, Rosalind, for your encouraging post. I am 64 but feeling and looking much older now. Hate to look at myself in the mirror. I am still tapering altho at a long hold at this point and get fearful that I will never regain my physical strength to get out and become socially active again. I have had less anxious days recently for which I am thankful so do recognize that something has stabilized.
Jean
I had the muscle wasting and weight loss. I know others have too. Then, around a year or 18 months out, I began to tip the scale in the other direction. Now it is leveling out, I am happy to report.
The fatigue was debilitating for me for a long time. I could not exercise. I still have trouble with exertion. I had to climb a rather long flight of stairs yesterday and the front of my thighs burned and ached. I wasn’t breathless at the top of the stairs, but very worn out. I do trust that this will continue to get better.
For a very long time I felt much older than my 55 years. I thought I looked worn out as well. But now, I feel much better. I don’t know if I look better, but my perception of myself certainly has changed. I am not at war with my wrinkles or graying hair. I used to be the queen of Botox, fillers, hair dye and very pricey haircuts in the name of trying to look youthful. I can honestly say that for me, none of those things are important any more. I am so thankful to be alive and healing!
My hunch is as you heal you will feel much better and either your appearance will get better, brighter, or it will stay the same but you won’t care a fig about it. 🙂
My skin is better than right after my cold turkey. If I lightly scratched my arm, and I really do mean lightly, my skin bled. I got blister like welts in places, dry skin, blotchy skin and I lost pigment on my arms and legs. I know this happens as my age, but I had not had it before withdrawal.
Keep fighting the good fight. I assure you the fatigue goes away. Your skin will most likely bounce back.
This may sound odd, but I feel sexier and more confident now than I did when I was so desperately trying to hold on to my youth. Funny, the peace I have inside now, knowing who I truly am, and knowing I can face anything life dishes out, makes me feel very confident and that translates to “attractive.”
I know you will be ok. Hold on. It gets better Jean. So much better. But it takes time. Sometimes longer than we want or anticipated. But it does get better.
Jenn
Dear Buni – extreme anxiety has been the most difficult symptom for me in this process. So strong at times it is physically painful. I can’t say I have any sure fire ways of coping with it other than riding it out. Some days that is easier than others. I, too, have a very difficult time with my thinking and cognitive abilities when the anxiety is so high. I do find that if I become aware that I may be experiencing a lessening in it’s intensity that it gives me hope.
I hope that you will begin to have those times when you feel less anxious. Don’t give up!
Blessings, Jean
Food for thought in times of distress..
http://www.everydayhealth.com/emotional-health/connecting-dots.aspx
Jean
I am 67 and have lost 30 lbs. my skin hangs and is wrinkled and dry, hair totally white now and getting thiner and thiner. I don’t know the Woman who looks back at me in the mirror. My rosacea is very bad now so my face is always red. Like Jenn, I used to dye my hair, put on makeup every day, dressed just so….all that vanity is gone now. I realize none of these things matter. I just want to be healed. I want to spend a day without anxiety. Without crying. I just want to go grocery shopping again. Clean my house, go out to lunch with my hubby. I am starting my 7th mo benzo free. I am thankful for that.
We have to believe we are healing. Believe we will get our lives back. It will take time, time to heal, time it gain weight, time to work on our muscle tone, our stamina. I am doing my Exercycle for 10 to 20 min a day, I push myself to do that. It’s very cold here (-12 yesterday) so I walk round and round inside my house…usually crying the whole time. I am tired by afternoons. This is a long hard road we travel but we’ll get there, with each other’s love and support.
My hubby is a godsend and everyday tells me how cute I am to him, how much he likes my hair. Loves me in the silly baseball hats I sometimes wear. I hope you have someone to lift your spirits. But if not, know that we are all here for you on Jenn’s blog. To help, to cry with you if you need it. Many many have gone before us and are healed. We will too. It just takes time.
God bless and hugs, Karen
Its so good to hear that positive statements with this benzo withdrawal. I’m going through it too.
It really is amazing how this can affect every part of our body and mind. Much future success to you!!
Thanks
Hi everyone, just found something that was interesting about benzodiazepines. Food for thought.
http://www.pcss-o.org/sites/default/files/Benzos%20in%20pain%20webinar.HO_.pdf
Thank you, Jenn, for your reply. Don’t know why I didn’t respond prior.
I’m having a really bad day – actually started yesterday. So extremely weak, physical anxiety through the roof, heart flip flopping, and I’ve lost 3 more pounds. My muscles are twitching especially in my legs and they feel like they are disappearing even more. No appetite. Brain crawling, ears ringing badly. Took me 3 hours of restless tossing and turning this morning before I could drag myself out of bed. Once up – so shaky. Ended up falling asleep in my recliner a couple hours later. Took me forever to get up from that.
My friend keeps telling me I need to address my adrenals. That I am experiencing an adrenal crash. Can’t say I disagree altogether as the adrenaline is pumping madly.
Scared that I am wasting away and no one is paying any attention to it.
Sorry for this being a downer.
Thank you, Karen, for replying to me on this. I am so sorry to hear you’re experiencing the weight loss and loss of tone as well. I think it scares me more when I realize my age. If I were younger, would it be easier to come back from this?
I, too, pray daily to just be normal – whatever one may think that is. I find myself when watching something on television wondering if the people are on meds, ever been on them, had to detox, etc. Then think how many have never and how I wish I was one of them.
I’ve gone downhill more the last couple of weeks but especially the last few days. So many physical symptoms and severe weakness. So shaky. Lost more weight and so much anxiety!
Not able to exercise at all right now – seems to make things worse. Glad that you’re finding that you can.
My hair has gone salt and pepper I guess you could say. Was supposed to go get it lowlighted and cut today and had to cancel as I felt so badly. I, too, don’t know who the woman in the mirror is. Especially when unclothed.
It’s great that your husband is so supportive and loving.
My husband doesn’t know what to think, believe, do. He seems to have separated himself from what I’m going through to a large degree. If I tell him I’m experiencing great anxiety – he says I’m always anxious. Often gets angry. I hate what this is doing to our relationship yet I know that he’s not going anywhere. He has his own serious health issues.
Thank you again, for your encouragement and sharing.
Blessings and much healing to you, Karen.
There is no downer stories when it comes to benzo withdrawal. Its a very serious condition for most of us.
Things will begin to get better, yes, you will probably have more bad days but you will also begin to have more good days! Hang on!
i am 6 weeks off diazepam. i am struggling. i seem to have sciatica but it disappears which tells me it isnt actual sciatica. i am in pain. i dont think i can live life this way for much longer. it is scary that you are still suffering at 3.5 years. tell me that it isnt true.
when does sleep come back. i was tapered off 20mg diazepam in a facility in 2 weeks. surely that was too rapid a taper? i am suffering. is it too late for me to reinstate now? i hyperventilate 24/7. i need relief. the panic attacks are unrelenting.
all i feel is despair. its 4am where i come from. i dont sleep during the day.
I am so sorry for your suffering. Despair is a common emotion in withdrawal. It does get better. Please hold on. Be patient. Be gentle with yourself.
Sleep returns for everyone at different times. I am sorry the detox facility took you off of your benzo so quickly. You can read Dr Ashtons manual and find out if reinstating is a good thing for you or not. She has some timelines that most people follow. The manual can be found on the resource page of this site. I wish you the best in your recovery.
It is true that I still have body symptoms. But I have a good life now. I am not suffering. I cope with the symptoms I have. I know that one day they will all go away.