The myoclonus / Clonazepam rabbit hole of misinformation

[[Th...]]

After trying to help stop several people in this hypnic jerk group from making the same mistake as my wife..... I have been going down the rabbit hole on how and why a doctor would prescribe a benzodiazepine for my wife's monoclonal jerks. 

 

Here is the NIH research paper that was used by WebMD to recommend clonazepam as a treatment for monoclonal jerks. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036960/

 

The entire research document flags clonazepam (a benzodiazepine) as an ideal treatment for a variety of monoclonal jerks. In fact, it is referenced 7 times and there are treatments that indicate over 1mg of clonazepam for certain types of myoclonus.... For Cortical Myoclonus it states, "Benzodiazepines are also very useful, especially clonazepam in large doses (up to 15 mg a day).".... 15mg! 30 times the amount that has harmed my wife!

 

But guess what the kicker is?  In one paragraph they flag that myoclonus can be caused and triggered by..... benzodiazepines! Which is what clonazepam is! you really cannot make this up and you really have to wonder how many people we know and love have been roped into taking this pill which has caused so much pain. 

 

 

I really hope this is seen by those fighting the good fight and they begin fighting to get these research papers removed as misinformation.

[[63...]]

Colin, the owner and founder of this site was also put on them for a form of myoclonus, up to 4.5mg for years. http://www.benzobuddies.org/about-us/meet-the-team/#colin

[[Co...]]

After trying to help stop several people in this hypnic jerk group from making the same mistake as my wife..... I have been going down the rabbit hole on how and why a doctor would prescribe a benzodiazepine for my wife's monoclonal jerks. 

 

Here is the NIH research paper that was used by WebMD to recommend clonazepam as a treatment for monoclonal jerks. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036960/

 

The entire research document flags clonazepam (a benzodiazepine) as an ideal treatment for a variety of monoclonal jerks. In fact, it is referenced 7 times and there are treatments that indicate over 1mg of clonazepam for certain types of myoclonus.... For Cortical Myoclonus it states, "Benzodiazepines are also very useful, especially clonazepam in large doses (up to 15 mg a day).".... 15mg! 30 times the amount that has harmed my wife!

 

But guess what the kicker is?  In one paragraph they flag that myoclonus can be caused and triggered by..... benzodiazepines! Which is what clonazepam is! you really cannot make this up and you really have to wonder how many people we know and love have been roped into taking this pill which has caused so much pain. 

 

 

I really hope this is seen by those fighting the good fight and they begin fighting to get these research papers removed as misinformation.

It is a question of balance. Myoclonus can be a very debilitating condition. And how individuals react to benzodiazpines varies a lot. For me, it was not worth taking clonazepam (not least because I became tolerant of it - it became ineffective). For other, it is a lifesaver. In recent years, I have largely outgrown my condition. This was unexpected - I have been very fortunate.

 

We should avoid making blanket statements about medicines based upon our narrow experience/perspective. Of course, we can point to other members here, but this is a self-selecting group (those who experience few problems are hardly going to join BB) - we are not representative of the general population.

[[Nu...]]

Excellent comments being made here. Benzos are a very effective muscle relaxant, so using them for a condition such as this may be the better of the two options for those living with it. It's hard to say that they shouldn't be used at all. It's a clinical decision based on negating the negatives and finding balance in life. Some will need benzos, unfortunately. In my mind, a primary concern should be acknowledgement of the problem by healthcare providers leading to more rational use and doing so with care and concern for the potential side effects and withdrawals that one can suffer -- and patient education and informed consent being given. And we can't judge those who understand the risks but choose benzos in an effort to increase their quality of life.

[[Co...]]

Agreed! People should be treated as people, not toddlers, and should be informed and given the choice themselves - whatever the reason the benzos were prescribed for. Even if the symptoms and duration of recovery are not well known/understood, doctors do realize they are habit forming/addictive and that alone would have withheld many people to take them.

[[Bi...]]

I'm sorry about your wife I really I am and hope she makes a full recovery very soon.

The government constantly lie I'm afraid and the vast majority of the trusting public either forget or have no idea.

Remember, pharmaceuticals cannot make a trillion dollar industry without the customers.

[[Co...]]

You'd need a big market (quantity) because the benzos are actually cheap and "multifunctional", not like a very very specific med for a rare disease that costs 1 mio dollars for the patient and they are cheap especially now because the patents expired and there are generics on the market. So it's not the most profitable anymore. I don't understand why they are still such a thing. Even more so since the opiod stuff has been out there for a long time, and because many doctors do know that ADs are not really better than exercising, and that benzos should only be used short term.

[[oc...]]

On 07/01/2023 at 16:41, [[T...] said:

After trying to help stop several people in this hypnic jerk group from making the same mistake as my wife..... I have been going down the rabbit hole on how and why a doctor would prescribe a benzodiazepine for my wife's monoclonal jerks. 

Here is the NIH research paper that was used by WebMD to recommend clonazepam as a treatment for monoclonal jerks. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036960/

The entire research document flags clonazepam (a benzodiazepine) as an ideal treatment for a variety of monoclonal jerks. In fact, it is referenced 7 times and there are treatments that indicate over 1mg of clonazepam for certain types of myoclonus.... For Cortical Myoclonus it states, "Benzodiazepines are also very useful, especially clonazepam in large doses (up to 15 mg a day).".... 15mg! 30 times the amount that has harmed my wife!

But guess what the kicker is?  In one paragraph they flag that myoclonus can be caused and triggered by..... benzodiazepines! Which is what clonazepam is! you really cannot make this up and you really have to wonder how many people we know and love have been roped into taking this pill which has caused so much pain. 

I really hope this is seen by those fighting the good fight and they begin fighting to get these research papers removed as misinformation.

Hi they always rises..I'm sorry your wife is going through this. I have a question. I was prescribed Klonopin 1mg for insomnia and it helped the first week or so. Then as I tapered barely helped ... Buy myoclonic jerks and movements started. I had muscle twitches from either insomnia or drug side effect, but this is a whole lot worse. Laying down I will get electric jolts and moving limbs fingers toes, legs etc. is your wife's jerks worse on Klonopin? My neurologist and other doctors want me on more than .5. I cannot sleep much with it and I cannot sleep at all without. Thanks

[[Th...]]

Hi, first of all, I'm sorry you are dealing with this.  Doctors also tried to get my wife to increase her dose as a way to deal with the myoclonal jerks and other symptoms. there are many symptoms that can come from the benzo, or from being in withdrawal from the benzo, whether a tolerance withdrawal, interdose withdrawal, or withdrawal from getting off of the medication.  

We were afraid when we recognized that this medication was harming my wife especially because the symptoms of it affecting her were very quick. She was physically dependent after taking 1 0.5mg klonopin pill each night as prescribed for 2 weeks and we tried several times for 2 months to just cut the pill in half, or 25% or some variation of that and each time it affected my wife, so we had to plan for a taper. Coupled with this was the fear that we had that this medication was what was given to her to deal with the jerks that kept her up for 4 nights straight.  We recognized quickly that this wasn't a therapeutic affect, but it was just numbing her body to the jerks to allow her to sleep. So I spent a lot of time researching to find good treatment options for the jerks that weren't dangerous. So she began taking hot baths or showers late at night, I would massage her legs each night to help calm the feelings, and I bought her a magnesium mineral oil to rub on her legs at night which gave her magnesium through her skin.  Also gave her magnesium glycinate to help... at the end of the day her issue would have been better managed with magnesium as opposed to this klonopin that the doctor gave her, but hindsight is 20/20.  

She's now 6 months off of klonopin and her jerks have improved a lot and kept improveing through her taper.  She's about 75-85% healed if I were to estimate, she'd probably say she's at 65-75%, but we both agree she is in much better condition than she was on this drug..  I hope you get to the other side of this as well and begin your healing journey.

[[oc...]]

Thank you. I am 5 days off and can not sleep at all. I will have 3 days of no perceived sleep and full of involuntary neck finger limbs moving. Dr wants me back on .5 klonopin if I cannot sleep but I can't reinstate again. It's what caused all this...but the insomnia and jerks remain sooo terrible. Lmk if your wife has anything else to help get past the insomnia and myoclonus. Did she have non stop muscle twitching (fasciculations)? I have done magnesium without help of symptoms.Thank you 

Edited May 18 by [oc...]
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