Clonazepam provided as leading treatment option for myoclonal jerks on webmd

One of the reasons that my wife trusted klonapin is this webmd article that mentioned it as the top treatment option for myoclonal jerks. That alongside the discussion with the medical professional caused us to trust the treatment.  We now realize it was wrong. Has anyone every ventured to these trusted sites to try to have them add warnings and correct the information to ensure others don't fall in this trap?  I intend on emailing the author of this article and expressing my concerns.

 

https://www.webmd.com/multiple-sclerosis/myoclonus-muscle-twitching

 

Benzodiazapines are listed all over the internet as treatment for akathisia. Akathisia induced by benzos. Benzos to treat akathisia induced by benzos.

 

It's a spiraling black hole circus of a farce.

Benzo’s for tinnitus

Benzo’s for RLS

Benzo’s for pelvic floor dysfunction

 

This drug has somehow become the treatment for all of these conditions but it causes them too so go on the drug to address an issue, then come off of it worse than before with more conditions than you started with.

 

What else is on the list, I know I’m missing many so-called uses for these miracle drug.

TheSunAlsoRises:

 

To answer your question, no, I have not tried to contact a huge source like WebMD, but I also only have so much capacity on a daily basis. More power to you for putting your anger into action. We can do things like report to the FDA, leave google reviews, anything to get the word out how unsafe these drugs are, and some doctors. I feel like there is a subset of the population that is just left by the wayside and considered collateral damage in the name of profit so contacting WebMD seems futile to me. But, if enough people get loud they have to do something about it eventually. I'm probably a little more cynical these days than I used to be, but also believe change is possible. I've been putting my energy into educating doctors and therapists that I come face to face with. You can't ignore a person directly approaching you. They can gaslight us, but still will have heard us. Good Luck to you and your wife.

 

Pamster, sleep and anxiety are the two big ones. Take these for even MORE anxiety and insomnia in your future!

That is great feedback. I'm going to put a lot of energy into ensuring that people know to not use benzos unless absolutely necessary. I'm in a forum for my wife's original condition (hypnic or myoclonic jerks) and shared our experience in there and so far, 2 people in 2 weeks followed up with me to thank me for making them second guess their doctor's prescription for the Jerks (which was Klonopin).   

 

Tinkerd/Pamster, It is surprising how many physical conditions they use anxiety medicine to treat.  It's almost as if they don't believe people have a physical condition and throw a drug at the condition, then hope the user becomes hooked and becomes too embarrassed of their physical dependency to say anything.

Benzo’s for tinnitus

Benzo’s for RLS

Benzo’s for pelvic floor dysfunction

 

This drug has somehow become the treatment for all of these conditions but it causes them too so go on the drug to address an issue, then come off of it worse than before with more conditions than you started with.

 

What else is on the list, I know I’m missing many so-called uses for these miracle drug.

 

Stiff Person Syndrome (singer Celine Dion was recently diagnosed with this)

Burning Mouth Syndrome

I just submitted a request to webmd to edit this article to help stop others from making the same mistake as we did. No clue if it will work, but I pray that it does.

 

I'm writing you to ask that you edit the above article to ensure the risks of Benzodiazepines are clearly highlighted. My wife recently suffered from Monoclonal Jerks. She was prescribed the smallest dose of Clonazepam (0.5mg). After reading the above-referenced article and reading this specific section:

 

"Benzodiazepines. Clonazepam (Klonopin) is often the first drug doctors use. It relaxes your muscles to keep them from twitching. Common side effects include feeling sleepy and being a bit clumsy. Because of that, your doctor will probably start with a very small dose. They’ll get bigger until your symptoms go away."

 

And seeing this as the first treatment option.... we assumed that was the best and first treatment option we should go with.

 

Here are some issues with clonazepam as the treatment option for Monoclonal Jerks:

- Technically, there is no research done to specifically confirm that this drug helps with Jerking.

- One of the side effects of clonazepam is..... twitching and jerking which means my wife has the same symptoms from the drug that is supposed to treat her symptoms.

- This drug is dangerous and deadly. One month into using this drug we discovered that you become physically dependent upon benzodiazepine within 2 weeks of use. This wasn't mentioned in this article. My wife is now on a 12-week tapering plan which has been very difficult for her.  We're on this tapering schedule because If you cut the drug cold turkey there is a significant chance of major seizures and even death.

 

- There are other more natural and less lethal options to treat hypnic/monoclonal jerks.  One of them is referenced in this article but is the third option in the treatments.... 5-HTP.  Additionally supplementing with magnesium glycinate and taurine helps reduce and sometimes even stop these jerks.  None of this is prioritized in the treatment option and because (as I mentioned above) the benzodiazepine reference in this article doesn't flag the major risks or side effects.... and doesn't even backlink to side effects, we are now stuck in this pickle.

- Psychosis, and suicidal thoughts are major side effects of this drug... the line in this article only reference drowsiness and slight nausea. If it referenced the major side effects, more potential users would second guess it as a treatment option.

 

Since helping my wife plan a tapering plan, I have since helped her find alternative solutions to clonazepam, but she is now dealing with withdrawals on top of her monoclonal jerks. We also have no clue what the long-term side effects of this drug will be, though we, fortunately, realized the error 2 months into her use.

 

I have helped alert 3 others in hypnic-jerking groups of the dangers and risks of clonazepam, which they were also prescribed by their medical professional.  I hope you are also able to modify this article to help effect change.  Here are some specifically suggested edits:

 

1. place more natural options at the top of the treatment options.  Ensure those suffering look to clonazepam as a last, not the first resort.  They are too dangerous to be the first drug option. 

2. For the Benzodiazepine line item, add a note that there are risks to using benzodiazepines (more than just nausea and sleepiness, which I'd take any day over what my wife is dealing with).  Add a backlink with more information on side effects. I would also suggest including the other side effects which you flag as "less common" but from what I am reading on the benzo forums, they are extremely common and undesirable side effects. 

 

Thank you for reading this and I hope you find it in your heart to make these changes to help readers not make the same mistake as others have.

Good for you TheSunAlsoRises, the Benzodiazepine Information Coalition does work on issues like this, the Alliance for Benzodiazepine Best Practices may also be helpful. 

Stiff Person Syndrome (singer Celine Dion was recently diagnosed with this)

 

I so hope she doesn't fall for this being prescribed to help her. Stevie Nicks of Fleetwood Mac and Jonathon Davis of KORN have openly spoken of their experience with benzo's. And neither had anything positive to say, both went through hellish detoxes.