Development of Protracted Symptoms

[[mo...]]

Hi,    This is my first post. I live in Wisconsin, have about 25 miles of XC ski and mountain bike trails. I'm quite athletic. I'm 54, have had anxiety and depression my whole life. I've been on a myriad of medications since about the age of 20.

I have recently completed waaay too short of a taper (.5 mg Klonopin) recommended by my psychiatrist- one week after 30 years on Klonopin.  I had no short term symptoms. I developed mild protracted symptoms after about a month, and more serious ones after about 3 months. (Chest pain, head pressure, whole body tingling, hot feet, extremely negative thoughts) The purpose of this post is to SHARE TO MY PSYCHIATRIST that others have protracted symptoms as well, and there is much more to Klonopin withdrawal than not having identifiable amounts present in the system.

Can people please DETAIL SYMPTOMS THAT WERE NOT PRESENT INITIALLY, AND OCCURED LATER ?? Can you please comment on when they occurred. And, how normal is it to have no short term symptoms yet develop protracted issues?? This info, along with a few other resources, will help her understand that there are indeed more serious withdrawal issues. 

I'm sure I'll have tapering questions and some others later. Thanks to the group for being here. This seems like a great resource.    ..tom

 

 

 

 

 

 

[[je...]]

Hi @[mo...]

Welcome to BenzoBuddies!

I am very sorry to hear you are still experiencing withdrawal symptoms. From what I gather from your post you seem to be around 4-5 months benzo free is that right? If so, that's very early off and pretty common to still have withdrawal symptoms. I am almost 9 months benzo free and I still have symptoms. Around here we don't distinguish between 'normal' and 'protracted' symptoms. Symptoms are just symptoms. You will be considered protracted if you don't feel you have recovered around 18-24 months after stopping benzo's. It's also very common to see some symptoms disappear and new symptoms show up. 

Everything you've described sounds pretty normal in recovery, so I want to put your mind at ease. It does however sound like your doctor doesn't believe recovery can take months or sometimes years. Is that right? Because we can assure you, recovery can take some time. You might be interested in sharing this study with your doctor.

[[Li...]]

Hello and welcome to BenzoBuddies @[mo...] In addition to the study @[je...] shared with you, another document that might get the attention of your psychiatrist is the Black Box Warning that now appears on the official US FDA labels for all benzodiazepines.  I’ve included a link to the FDA label for brand Klonopin below but you can look up the one for your specific generic manufacturer as well.

Here’s what the label has to say about Protracted Withdrawal Syndrome:

Quote

Protracted withdrawal syndrome associated with benzodiazepines is characterized by anxiety, cognitive impairment, depression, insomnia, formication, motor symptoms (e.g., weakness, tremor, muscle twitches), paresthesia, and tinnitus that persists beyond 4 to 6 weeks after initial benzodiazepine withdrawal. Protracted withdrawal symptoms may last weeks to more than 12 months. As a result, there may be difficulty in differentiating withdrawal symptoms from potential re-emergence or continuation of symptoms for which the benzodiazepine was being used.

Many prescribers think that protracted withdrawal symptoms are an indicator of relapse (in your case, a return of anxiety and depression).  If your prescriber falls into this camp, you might want to gently point out that at least two of your symptoms (whole body tingling and hot feet) are not indicators of either anxiety or depression.

DailyMed - KLONOPIN- clonazepam tablet
https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=cfa0d79a-843c-4b88-95a1-e9511d649ca1

 

 

[[wo...]]

Three months off I went off the charts worse. Stomach issues, insane head pressure, heart issues, worsening neuropathy, and that’s when my mental symptoms hit. Massive Anxiety, souls crushing depression, panic attacks, fear, agoraphobia. Months 3-9 were a very very dark and scary period for me. 
 

im 13 months off now and some of those are gone. 
 

you are doing good work with trying to educate. It’s very real. I’ve struggled to have other medical professionals believe me as well, hang in there. 

[[ne...]]

https://corxconsortium.org/wp-content/uploads/Benzo-Deprescribing.pdf

https://www.benzoinfo.com/informed-consent/

https://www.benzoinfo.com/resources/

[[mo...]]

3 hours ago, [[j...] said:

Hi @[mo...]

Welcome to BenzoBuddies!

I am very sorry to hear you are still experiencing withdrawal symptoms. From what I gather from your post you seem to be around 4-5 months benzo free is that right? If so, that's very early off and pretty common to still have withdrawal symptoms. I am almost 9 months benzo free and I still have symptoms. Around here we don't distinguish between 'normal' and 'protracted' symptoms. Symptoms are just symptoms. You will be considered protracted if you don't feel you have recovered around 18-24 months after stopping benzo's. It's also very common to see some symptoms disappear and new symptoms show up. 

Everything you've described sounds pretty normal in recovery, so I want to put your mind at ease. It does however sound like your doctor doesn't believe recovery can take months or sometimes years. Is that right? Because we can assure you, recovery can take some time. You might be interested in sharing this study with your doctor.

Hi JB,    Yes- it has been about 4 months since I stopped Klonopin. Ok, so symptoms are designated protracted after much longer. That makes sense. 

I have a good doctor, caring and efficient.  But yes, she apparently does not know much about benzodiazapene withdrawal. In a text, she said my symptoms, "Would not be clonazepam withdrawal this far out." If I had not read about Klonopin withdrawal and started taking Klonopin again, I might not be doing so well. Frustrating.

Thanks for the study. It contains excellent info that I'll share with the doc. Thanks for your help!!

 

 

 

[[mo...]]

15 hours ago, [[L...] said:

Hello and welcome to BenzoBuddies @[mo...] In addition to the study @[je...] shared with you, another document that might get the attention of your psychiatrist is the Black Box Warning that now appears on the official US FDA labels for all benzodiazepines.  I’ve included a link to the FDA label for brand Klonopin below but you can look up the one for your specific generic manufacturer as well.

Here’s what the label has to say about Protracted Withdrawal Syndrome:

Many prescribers think that protracted withdrawal symptoms are an indicator of relapse (in your case, a return of anxiety and depression).  If your prescriber falls into this camp, you might want to gently point out that at least two of your symptoms (whole body tingling and hot feet) are not indicators of either anxiety or depression.

DailyMed - KLONOPIN- clonazepam tablet
https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=cfa0d79a-843c-4b88-95a1-e9511d649ca1

This is excellent Libertas- thanks!! 

[[mo...]]

14 hours ago, [[w...] said:

Three months off I went off the charts worse. Stomach issues, insane head pressure, heart issues, worsening neuropathy, and that’s when my mental symptoms hit. Massive Anxiety, souls crushing depression, panic attacks, fear, agoraphobia. Months 3-9 were a very very dark and scary period for me. 
 

im 13 months off now and some of those are gone. 
 

you are doing good work with trying to educate. It’s very real. I’ve struggled to have other medical professionals believe me as well, hang in there. 

Thanks for this list, WG. Tingling and head pressure are my main symptoms. I'm glad you are better, hope you can cross benzo withdrawal off the list soon.

[[Li...]]

You’re welcome @[mo...].  Might I suggest that you limit the amount of information you share to just a few points substantiated by documents from sources your psychiatrist is most likely to regard as credible?  Based on what I’ve read here and my personal experience, psychiatrists are busy people who do not respond well to being inundated with information/documents, especially not from sources they consider less than credible (e.g. comments made by random individuals in online forums/social media or information gleaned from ‘Dr. Google’). 

[[mo...]]

11 hours ago, [[n...] said:

https://corxconsortium.org/wp-content/uploads/Benzo-Deprescribing.pdf

https://www.benzoinfo.com/informed-consent/

https://www.benzoinfo.com/resources/

Thanks NW- this is a wealth of information. I have a lot to put together for the therapist before my next appointment Wednesday. 

[[mo...]]

5 minutes ago, [[L...] said:

You’re welcome @[mo...].  Might I suggest that you limit the amount of information you share to just a few points substantiated by documents from sources your psychiatrist is most likely to regard as credible?  Based on what I’ve read here and my personal experience, psychiatrists are busy people who do not respond well to being inundated with information/documents, especially not from sources they consider less than credible (e.g. comments made by random individuals in online forums/social media or information gleaned from ‘Dr. Google’). 

Hi Libertas,  Yes, good points- thanks.  That makes sense. I will be rather short and concise, using info such as the new benzo warning label and from some of the links posted, using select quotes from the articles and referencing the source. I have a 45 min video call Wednesday, and am thinking I'll present this to her then to ensure she sees all of it.

[[Li...]]

Of the documents shared so far, my guess is your psychiatrist will regard the info from the FDA label and the peer-reviewed study @[je...] referenced as the most credible.  Fwiw I typically prepare a one-page-maximum ‘briefing sheet’ for my medical appointments — my providers seem to appreciate these because they convey relevant information quickly and keep the visit on track.