A benzo brother, Barry Haslam sends me emails about the political undertakings in the U.K. with regards to benzos. Recently laws were passed (or being passed?) to allow types of doctors who previously were not allowed to prescribe a benzo to now prescribe them. Needless to say, this is frustrating to those of us who have been harmed by the drugs and know the dangers. It is frustrating that the people in charge continue to ignore the facts about benzos, year after year, decade after decade, while more lives are ruined and lost.
John Perrot wrote this letter in reply to an email that Barry wrote. I asked John for permission to reprint it here. It gives a good overview of how hard and long the battle to ban benzos for more than the manufacturer’s suggested use has been. I’m unaware of any legal battles here, other than petitions that circulate about benzos. If our battle will look anything like the one waged over the pond, we have our work cut out for us, but I think we know that.
Thank you John, for your permission to post your letter:
“Wholeheartedly agree Barry. No-one in government, DH, MHRA, RCGP, RCPsych, BMA can pretend they did not know about the benzo issue from the early 1980’s onwards.
Over 1000 Parliamentary Questions since the late 1970’s; hundreds of research papers about the dangers of benzos all ignored; at least 24 years of “taking it seriously” by the Department of Health; “Beat the benzos” campaign from 1997 – 2007 with evidence submitted by Phil Woolas MP, John Grogan MP and Sir Sydney Chapman MP; promises made and broken by countless Public Health ministers and more recently Prime Minister David Cameron; there’s a letter published in the Journal of the RCGP as early as 1983 asking for help http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1973010/?page=1; concerns expressed repeatedly to DH, the Royal Colleges and the BMA by benzo experts Professors Ashton and Lader and ignored……
All met with denial. Denial of withdrawal syndromes and damage caused by long-term use, professors with conflicts of interest with pharma writing so called “independent” reports omitting known risks and long-term effects or making decisions on drug policy, denial of the scale of the problem, feigned concern, obfuscation…..the list is endless.
All we want is dedicated national withdrawal services and enforcement of the CSM 1988 2 – 4 week benzo prescribing guidelines (ignored for 27 years now) to help patients who have been harmed by doing nothing more than following their doctors’ instructions.
What do we get? A continuing drug misuse agenda and no services.
We are drowning in evidence. Drug deaths, hospital admissions, risk of early dementia, social decline, withdrawal syndromes lasting years, suicides…..it has been submitted again and again with no action.”
John Perrot.
Dr.Leigh,
How grateful I am to read your blog. Especially the posts on hope. My story is quite different, but with many similarities. I was on hormone cream – progesterone – excessive amounts for months. I felt great. A bit tired, but no anxiety, no panic attacks. The excercise intolerance started first, then the dizziness. And then my body snapped and pregnancy- like sickness took hold – worse than with my daughter, unimaginable. After laying on the floor, the room spinning, dry heaving and rocking back and forth to try and stop the adrenaline buzzing in my body I decided it must be the progesterone cream. I stopped that day. October 12. I’ll never forget that date. There was my life before Oct 12, and then the hellish nightmare after. Not a day goes by that I don’t regret putting that cream on the fattiest parts of my skin. What no one told me is that progesterone cream builds up in your fat cells, and releases high doses in your blood stream months after. I’m already sensitive to hormones. Then my nightmare really began. Trips to the ER – “your bloodwork is great, take this Ativan for your nervousness.” I took one and finally slept one night after 4 nights of body buzzing. During the next 2 months, I’d wake up every time I “slept” with panic attacks, I could barely get going, I lacked patience and was snappy, oh the terrible migranes, the tingling in my hands and face, head heaviness beyond reason, muscle buzzing, internal head shakes upon waking, the depression. I had never felt hopeless before this. I didn’t understand how real it could be. I couldn’t drive a car from sheer terror. I didn’t want to go anywhere anyway so it didn’t matter. Still, I didn’t attribute all that to progesterone withdrawal. It had to be something else right? Something worse, definitely terminal. More medical testing after I complained of tachycardia and shortness of breath. I sobbed at the ER asking them to please please make my head clear once again, it was hard to lift it level. Bloodwork, brain and body ct scans, ultrasounds, lyme tests, (drug tests, yeah thanks a bunch) xrays, heart tests, thyroid, iron, constant ekgs, everything under the sun. All normal. Nothing wrong.”Maybe MS??”they misdiagnosed because of muscle pain and crazy sensations. It wasn’t. Later I read benzo withdrawal can mimic MS. Try and go on walks and journal they advised. Snappily, I told them that once I could get off my couch I’d try a lovely sunset walk. I started to heal at exactly 3 months. Slowly things started to subside. I could get around, go out, drive a car. I still had crazy hot flashes (thanks hormones) and odd sensations. I had NO idea that progesterone affects GABA receptors, much like benzos. I have only read a few stories similar to mine and they pointed me to benzo buddies and askapatient.com where you can truly see the damage inflicted by messing with hormones and neurotranmitters. I cried when I read the symtoms of w/d. I was doing pretty well and hit a bad spell this months. Cortisol high at night, cold terror sensations and panic attacks again. From 1:30-2:30 am. But I’ve come so far. I’m working on the obessive thoughts. They don’t quiet very easily. I’m sure it is hard to convice a Dr. of benzo w/d. I’ve found only one that thinks progesterone w/d is even possible. God is my Savior and he will carry me through. Thanks for the hope. hope Even though I’m still scared, I don’t feel so alone.
I forgot to mention, I am only 29. I have a 3 year old. I have so much to be well for and many years to enjoy. Sometimes I forget what life was like before this – maybe this is my new normal. Hoping God wants to take me further though.
🙁 2 those so called “professionals..”
I doubt it is your new normal. Healing takes place for years… keep going! Blessings to you.
I was taking Clonopin and Cymbalta for eight years, stopped them cold turkey in July 2014 due to pregnancy although I took klonopin as needed .25 a few times during. I had no withdrawals. After baby this last April my doctor put me on cymbalta 30 mg and klonopin as needed. Rt after the cymbalta got started I got intensely sick had major panic attacks, and manic feeling so I had to stop it. A week later I got weird symptoms like : panic attacks, increased anxiety, brain fog, constant dizziness, blurred vision ect. I took the klonopin and it wasn’t helping and I refuse to take a higher dose. Is this postpartum anxiety or is this withdrawals from only 4 days of cymbalta or klonopin? Any insight would be great! I’ve been to several doctors and all my blood work comes back normal and my ekg. So worried about if this will go away as it’s been a month.
Hello, sorry you are suffering. No one here on this site, me included, can diagnosis what is the cause of your symptoms. If it is a kindling of benzo withdrawal, it can go on longer than a month. The average healing time is 6-18 months. Some take much longer, and some take much shorter time. Have you had any bloodwork that shows how you metabolize psych meds? That may shed some light on things. Whatever the cause, I do hope you feel better soon. Hope you educate about yourself about benzo withdrawal.
Jennifer
Hi please help me and respond soon pls – i hope you can give me some insight and reassurance. i have no help. i keep reading the internet. i heard about kindling. am i going to have horrid wd? the pharmacist said im tolerant already like headstart on wd so shouldnt be hard. taking .5 klon since jan. wafers should be in. nurse practitioner is having me cut my am dose of .25 in half to start with. i see her friday. besides worryin bout symptoms i have no help. i have weekly rental to get ready for end of june lots of work and take care of my rest, meals etc
Back when i was 34 a dr said take tranzene for my worries about surgery i had. kept me on them 4 yrs upping dose. got real sick and another dr said cold turkey. it was hell.
at age 40 or 41 moms doc gave me ativan. uhg. i didnt know it would be bad. after couple months? i noticed immediately and stayed home few days stopping it. no drugs after that until the first klonopin age 46 to deal w being caretaker of mom.
first took klon at age 46. a year and half at apx .25 day. great at first but six mo? later life become difficult and/or felt i wanted more. so the last months on it i broke it in pieces till off it. insomnia began during that and anxiety over lack of sleep. a naturapath kept giving me gaba stuff,melatonin, 5htp, phosphytidlsterine etc. may have made it worse?
i didnt know what it could be but anxious more than normal and obsessed w my sleeping problem. thats when i went to the dr in fl cause a year of bad sleep and life questions.I was off klon for 8 months apx before a dr in fl put me on it again saying its low dose, you seemed ok last time.
am i a candidate for this kindling? or the paws i heard about? is my tapering too much? i am starting this week when it arrives! i see nurse practitioner fri. she doesnt think it will be that bad. thinks my anxiousness over this is what i need to address
currently anxiety, depression, hard mornings, cant exercise, low back pain, brain fog, fatigue, jitters that come on, feeling incapable some days. i want my life back, a job, friends, the gym etc.
i have a few neighbors but alone mostly. BF around between work out of town. he thinks soon as i am done wi last dose ill be fine!
Hello and thanks for reaching out. It is a shame that so many doctors are uneducated about these drugs. I’m sorry you’ve gotten tangled up in them. The best advice I can give is to go to the resource page here on the site and go to the ashton manual link. Read everything you can about how to taper safely. Some people feel that even the ashton taper plan is too fast, so listen to your body. Educate yourself as best as you can so you will know when your doctor or nurse practitioner is giving you the wrong advice about tapering or treatment of any withdrawal symptoms. Doctors can cause more damage to us in withdrawal, so please be very cautious and do your due diligence. No one can tell you what type of withdrawal and recovery you will have. Everyone is different. I’m praying for your quick and easy recovery.
hi just need advice , had been on 4mg of Klon for 5yrs tapered with val. but did start taper at 30mg cutting 2mg a week till 2mg then stopped was hell all the way been 6mo and still really bad leg back tremor elect shock feeling all still bad, should I reinstate at a higher mg and take smaller cuts ???