benzodiazepines

[purplelady]

Is anyone here taking benzodiazepines?

 

[Dechi]

They’re very hard to get nowadays. They are very addictive and doctors won’t prescribe them. I’ve tried.

 

[BonitaApplebum]

Is anyone here taking benzodiazepines?

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.

 

[lookinglass]

I have been taking 1mg lorazepan for 8 years on a daily basis. Brilliant for sleep. Brilliant for nausea. Same for anxiety. Only allowed 28 days supply from nhs so a few days when I have to choose between sleep or my occasional M.E. days. I could come off if I was determined but I am now 80 and what the hell, i don’t smoke, can’t tolerate alcohol. So I am addicted but ....they work!

 

[geraldt52]

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.

Making the decision to take Klonopin was the single worst decision of my life. Everyone has to decide for themselves if it's worth the risk.

 

[StarChild56]

I do, and have for years. I take diazepam as a muscle relaxer (tried others before this and none were strong enough). I also take them whenever I have a migraine along with my migraine medication as my neck muscles tighten so badly.

I am lucky as I was able to quit cold turkey after taking them for several years 2x a day everyday - no problems. I did not use them for over a year or so, and then requested them from my specialist to help with my migraines/muscle spasms. I use them as much as 2x a day some days and I go a week without them if I have no migraine.

I have MCAS and my specialist says that it is a good MCAS drug and maybe that is why it helps with my migraines in addition to being a muscle relaxer.

 

[Moof]

I was prescribed Ativan/lorazepam in 1977 for ME, even though I didn't suffer with anxiety or difficulty sleeping (the GP had no idea at all what was wrong with me). It was touted as the new wonder-drug at the time, and marketed very aggressively to doctors by Wyeth.

Obviously, as it's sedating, it made the fatigue much, much worse. I lost several years of my life to it; I can remember very little of that time because it affects your ability to form and retain memories. Coming off it was regarded as entirely my problem and took over a year, and the withdrawal symptoms went on for around eight to 10 years – gradually diminishing but still impacting my wellbeing. I'll never go near this class of drugs again, unless it were a single dose required for surgery.

 

[jesse's mom]

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.

On days I am not suffering much I skip it.

I am not having memory trouble, in fact I remember much more in detail than my fairly healthy husband.

I was taking xanax for years and came off that with a two week taper. No trouble for me. Didn't take any benzos for about 5 years. Then I got really sick with ME/CFS and chronic insomnia.

I take another benzodiazepine for sleep, it only has a 5 hour half life. It is called Halcion my neurologist is also a psychiatrist and a sleep specialist. I had a sleep study done in 2011 and another one in 2018. That is a medication that is super hard to get, but it works for me. I would not take it at first and I was awake for three days and suffering horribly.

I hear horror stories all the time about these medications. I think all of our bodies are very different, and I think for the correct symptoms medication can be a good thing.

I would never take any medication that is not prescribed to me. If a Dr days no there is probably a reason in an individual case.

 

[Mary]

I took lorazepam for 11 years for sleep - I took it in the middle of the night. I started at 0.5 mg and then went up to 1 mg. but no higher. And then a few years ago my sister told me that benzos are linked to Alzheimer's, plus I'd reached a stage where the 1 mg. really wasn't doing much, I would have had to increase it again and did not want to do that.

So I got off it over a period of some 8 months but sleep was hellish. I learned a lot about glutamate in my quest for sleep! And now am doing okay with lots of vitamin C (scavenges excess glutamate), niacin (flushing kind) at night which stimulates GABA receptors and is very relaxing, glycine, l-theanine, 5-htp, sublingual melatonin. Also am vaping medical marijuana in the middle of the night - indica strain - so it's not like what I used to smoke back in the day. And with all of this I am getting pretty good sleep.

A few other things that have been effective for sleep are Unisom (very powerful antihistamine, much more effective than Benadryl - 1/4 tablet would let me sleep, only it loses its effectiveness after about 2 weeks) and magnolia extract or bark - the kind from Bulk Supplements was very strong, and worked great for several weeks, until it didn't any more. So I have to mix things up once in awhile.

Anyways, if there's any way to avoid taking benzos, then don't take them. We're all different but for many people they have been a nightmare drug. I think I got off relatively easy. benzobuddies.org was helpful in figuring out how to taper off of the lorazepam.

 

[hikinglo]

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.

 

[perrier]

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.

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.

 

[Mary]

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.

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 have one sister who's had back problems for a very long time and I kept urging her to try this and she kept resisting, and finally this past year she gave it a go, and was very surprised to find out how well it works. She was a hard case! Now she tells other people to try it! (and she was relying on codeine for the pain but I think that is in the past now)

 

[Kenny Banya]

Is anyone here taking benzodiazepines?

Zolpidem (Ambien) is far more powerful & far less addictive

 

[jesse's mom]

I have magnesium oil, I do use it. It does help with muscle cramps, and twitching. It does not help herniated discs in my cervical spine or migraines. There are times that I made decisions for myself; along with the advice of my Dr that others would not make. And that is okay. I represent the minority of people in this group whose quality of life is better taking my Dr recommended medication.

I know I am the minority, yet I comment.

 

[Neunistiva]

I was prescribed clonazepam for very severe dysautonomia, POTS, something like myoclonus seizures. When I get these seizures my skin on my head feels like it's electrified, my hair stands up, I have trouble breathing and my heart feels weird, I have urinary and digestive problems, and it progresses into delirium.

I take it 3 times a day because I get the "seizure" as soon as it wears off, but I am trying to keep the 24h total under 1mg.

It's addictive drug and if I found anything else that helps I would stop taking it.

 

[2Cor.12:19]

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.

 

[purplelady]

@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.

 

[Neunistiva]

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.

As long as it's not life threatening, they're not much concerned with how much suffering you'll go through.

 

[2Cor.12:19]

I recommend tapering under the care of a doctor.

Absolutely!

 

[2Cor.12:19]

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.

I agree. I made a chart showing my tapering method and schedule, and progress to show my doctor. She's an awesome doctor and I'm pretty sure she'll agree to it since it's a very slow methodical taper. I've stalled my taper till I see her in January, but wanted to make a little headway with my taper first to let her know how I'm doing so far.

And you're right, she needs to guide me in case something weird happens - with ME/CFS there's just too many other problems that could arise.