The myoclonus / Clonazepam rabbit hole of misinformation

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.

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

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.

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.

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.

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.

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.