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Is anyone here taking benzodiazepines?
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I am. I take 1/2 mg clonazepam at bedtime and the other 1/2 when I wake in the night. It helps with sleep & anxiety & muscles aches related to my CFS/me. It really is hard to get, luckily I have an empathetic & compassionate internist who prescribes them. I had to go on hiatus while pregnant & breastfeeding. Ii really was hard to come off of them & I went back on them shortly after I was done breastfeeding. I actually would take a 1/4 or 1/2 occasionally when dealing with almost unbearable anxiety or sleeplessness. My internist was hesitant to write me a s riot again after I’d been mostly off of them for 2 years. But she did. I still don’t feel great about being in them, just because I am dependent on bentos now. One the mail pharmacy didn’t deliver on time & I went into withdrawals and it was not fun. Once I took a dose I was healed of my flu like symptoms. Then again I did a 2 week taper once I found out I was pregnant & it wasn’t that acute. Let me know if you gave any questions.Is anyone here taking benzodiazepines?
Before you decide to go down the benzo path, you'd be wise to do some research into what can go wrong....this is a good place to start: https://www.benzo.org.uk/. Benzos do tend to work well for their intended purpose, but they can also be very dangerous, especially over the long haul. A doctor who refuses to prescribe them to you may be doing you a favor.Is anyone here taking benzodiazepines?
Brilliant post; so many ME doctors prescribed klonopin; so many; this is a hell on earth med; you are very brave, it should get better.I did for 10+ years, regretfully.
Quick background: ME since 1997, worsened with poor medical advice for "cfs" (exercised when I would start feeling a little better; didn't realize the crashes 2 days later were related), educated myself better about Ramsay's ME by 2001. Took only natural supplements, avoided rx's and most OTCs.
I like many read the 2001 Klonopin/cfs/Severling/Cheny article and was very intrigued. (I saw no published research to back it up, but ME dulls my critical thinking skills....) I even eventually made my own graphics from the description, and finally took them with the printed article to my long-time doctor in 2006 during an especially poor sleep interval. He was happy to oblige. We started me off at 0.5 mg, slowly increased, and a few months later, 1 mg seemed like it would reliably give me a full night's sleep most of the time.
Thus I took 1 mg clonazepam at bedtime for sleep for 10-11 years, as prescribed. I thought I was ok, since I never recognized any signs of tolerance or dependence, though I was aware of the lingering drowsy side effects which a first were welcome, considering my previous poor sleep.
But slowly, insidiously, over years, my cognition declined, speech/word finding was embarrassingly bad, simple math even worse (I was my own accountant for self-employment prior to ME), apathy set in, and brain fog melded with duh-duh-dull brain. An avid outdoors person - even if I could only mosey around woods or field for 15-20 minutes with ME - I got out of my house or yard less and less, could do less and less. I blamed it on progressive ME.
I don't remember what caught my eye regarding benzos, but started following leads (especially info that you don't get in the US) that were not available online when I first started the drug. Those leads lead me to rightly question the drug. I decided to go off clonazepam starting January 2017. I decided to try a fast withdrawal (4 months) so I would have no problem distinguishing withdrawal symptoms from ME. I knew I'd be in for some pretty nasty withdrawal symptoms, but as a lifelong "tough guy" figured I could take it.
Boy, was I wrong! This sounds weird, but I'm 'glad' I had the veteran ME experience for 20 years to prepare me for the past 2-year marathon of withdrawal and post-withdrawal hell from 1 mg of clonazepam! (Which is equated to 20 mg diazepam, BTW.) The list of symptoms for me is long, pretty severe, and unrelenting. Far worse than in some areas than acute (early) ME. Did I say unrelenting? If I could pick just one all-encompassing word, UNRELENTING would be it.
Long story short, I am 1 year and 23 months off of 1mg clonazepam. My ME is much worse, likely due to the abuse my body had taken from benzo withdrawal symptoms. Stamina very poor. Homebound most of the time; bedbound far more often than my first 20 years of ME. Lingering post-acute withdrawal symptoms, still unrelenting, but fading ever-so-slowly.
I found a lot of folks who say 2 years after they "jump" (off their last dose) they begin to feel like themselves again. I suspect, since I jumped at least 8 months early, I may feel like I 'just' have moderate-severe ME by 2020 sometime.
I would add benzoinfo.com (a non-profit) and w-bad.org to previous posts that mention the invaluable Ashton Manual, benzo.org.uk and benzobuddies.org just as a start.
As an aside, my trusted doctor of 18 years has always "believed" in my ME, helped me get SS Disability (by 2005), did my EBV, Rnase-L and NK cell function tests, yet does NOT believe withdrawal from 1 mg of clonazepam has damaged me this badly for this long.
The benzo community is much larger, far more stigmatized, neglected, with far less research than the ME community. My heart really goes out to the millions who were healthy, poly-drugged because they and their doctors didn't know it was the benzo side effects and tolerance that was causing their additional symptoms in the first place. Many are far more damaged than I. (As a comparison, Phoenix has roughly 26,000 members; Benzo Buddies, 56,000. An April 2018 article In Psychiatric Times looks at the online benzo community and is one of the few that begins to acknowledge the medical community's neglect of benzo-caused illness.)
But mine is just one story. I'd love to see research catch up, and find more of the stories where folks say they were on a benzo for longer than 2-4 weeks and had no trouble coming off.
Have you ever tried magnesium oil? It can be very effective for muscle pain and inflammation. I've had some severe back pain in the past where I was stuck on the floor for days, very hard to move, and since I've started using magnesium oil, it doesn't get nearly as bad. I use it on anything that hurts actually - my wrist, my knee. I've recommended it to many people and they're almost all very surprised when they find out how well, and how quickly it works - usually within just a few minutes - including my sons who are very tall and prone to back issues. I just buy it from iherb or Swanson's, any health food store would have it.I do take Klonopin 1/2 mg in the morning when I am tight in my neck and my muscles hurt in my arms and legs. I have similar neck problems to @StarChild56. This helps with headaches and muscle twitches and cramps.
Zolpidem (Ambien) is far more powerful & far less addictiveIs anyone here taking benzodiazepines?
@hikinglo - Thank you for sharing your story. Now that 9 more months have passed since you posted this, how are you doing now? I hope you're doing better.Long story short, I am 1 year and 23 months off of 1mg clonazepam. My ME is much worse, likely due to the abuse my body had taken from benzo withdrawal symptoms. Stamina very poor. Homebound most of the time; bedbound far more often than my first 20 years of ME. Lingering post-acute withdrawal symptoms, still unrelenting, but fading ever-so-slowly.
I found a lot of folks who say 2 years after they "jump" (off their last dose) they begin to feel like themselves again. I suspect, since I jumped at least 8 months early, I may feel like I 'just' have moderate-severe ME by 2020 sometime.
@hikinglo - Thank you for sharing your story. Now that 9 more months have passed since you posted this, how are you doing now? I hope you're doing better.
I started tapering off .75 xanax very slowly in Oct, and am only 1/3 of the way there. I'm doing no more than 5-10% cuts every two weeks. If all goes well, I hope to be off by July or August. I was on xanax for 21 years but have had ME/CFS for 33. I too am hoping my "veteran" ME/CFS status will help prepare me for this since I'm already home-bound and feeling lousy most of the time anyway.
If you could do it over, would you taper slower? Any suggestions would be helpful.
I recommend tapering under the care of a doctor.
Absolutely!I recommend tapering under the care of a doctor.
It's always good for your doctor to confirm you are ready to get off your medication and to be informed in case something goes wrong, but as for the tapering schedule itself the problem is that most doctors think you can taper off in a matter of 3 weeks.