(If you are on a benzo and are satisfied with it, this post is not for you.)
I wanted to get an idea of how many pwMEs were damaged by a prescription benzo for ME symptoms.
My reason for asking is multi-faceted (in no particular order of importance):
1) Like me, did you mistake the slow, insidious side effects (and/or tolerance effects) of your benzo as ‘just’ the long term ravages of ME? Or did you stop for other reasons, only to be left with further neurological damage (beyond your initial baseline ME) you didn’t have before taking this class of drug?
2) I hoped someday to recover enough cognition to write an article or two about benzo damaged pwMEs (but have not had the cognitive stamina to do it along with my routine ADLs, yet).
3) I tend to be proactive when the going gets tougher. A mission or goal helps distract me from nasty neurological symptoms that linger and easily flare 2.5 years after finishing a fairly rapid taper off 1 mg of clonazepam prescribed for ME sleep issues:
I’d like speak up so that our numbers are recognized, to help educate medical providers and others, and to talk to ME researchers about this problem, if I eventually improve enough do it coherently, if not cohesively. (I found that many – perhaps most? - benzo-damaged patients meet “chronic fatigue” definitions. There are WAY more folks in the benzo-damaged community, and they/we are far more maligned and stigmatized than even ME & cfs patients!) This #3 is over ambitious, I know. It’s the damaged GABA receptors talking.
4) I haven’t been able to hop onto forums for many, many years (too draining), but for me benzo damage is far more isolating than even moderate-severe ME. Feeling isolated was never an issue for me during my first 10 years of unmedicated-but-disabling ME, or for the first half of the 10 years I took clonazepam as prescribed. So I guess I’m reaching out here. Benzo Buddies is a great forum, but most there didn’t start out with ME at baseline. (Note: It might take weeks for me to produce follow-ups or replies though. Don’t take it personally.)
There is so much more that I’d like to cover on this issue, but can only handle small bits for now. And I know most like me can only handle a paragraph or two (sorry for exceeding that). Thanks for bearing with me!
P.S. If you are on a benzo prescription and want to get off, NEVER stop suddenly, take your time and do your research (I have no affiliation with any of these groups):
Benzodiazepine Information Coalition
https://www.benzoinfo.com/
World Benzodiazepine Awareness Day
https://w-bad.org/
The Ashton Manual for Benzo Withdrawal
https://www.benzo.org.uk/index.htm
Benzo Buddies Forums
http://www.benzobuddies.org/
Alliance for Benzodiazepine Best Practices
https://benzoreform.org/
As Prescribed documentary trailer
https://www.asprescribedfilm.com/
I wanted to get an idea of how many pwMEs were damaged by a prescription benzo for ME symptoms.
My reason for asking is multi-faceted (in no particular order of importance):
1) Like me, did you mistake the slow, insidious side effects (and/or tolerance effects) of your benzo as ‘just’ the long term ravages of ME? Or did you stop for other reasons, only to be left with further neurological damage (beyond your initial baseline ME) you didn’t have before taking this class of drug?
2) I hoped someday to recover enough cognition to write an article or two about benzo damaged pwMEs (but have not had the cognitive stamina to do it along with my routine ADLs, yet).
3) I tend to be proactive when the going gets tougher. A mission or goal helps distract me from nasty neurological symptoms that linger and easily flare 2.5 years after finishing a fairly rapid taper off 1 mg of clonazepam prescribed for ME sleep issues:
I’d like speak up so that our numbers are recognized, to help educate medical providers and others, and to talk to ME researchers about this problem, if I eventually improve enough do it coherently, if not cohesively. (I found that many – perhaps most? - benzo-damaged patients meet “chronic fatigue” definitions. There are WAY more folks in the benzo-damaged community, and they/we are far more maligned and stigmatized than even ME & cfs patients!) This #3 is over ambitious, I know. It’s the damaged GABA receptors talking.
4) I haven’t been able to hop onto forums for many, many years (too draining), but for me benzo damage is far more isolating than even moderate-severe ME. Feeling isolated was never an issue for me during my first 10 years of unmedicated-but-disabling ME, or for the first half of the 10 years I took clonazepam as prescribed. So I guess I’m reaching out here. Benzo Buddies is a great forum, but most there didn’t start out with ME at baseline. (Note: It might take weeks for me to produce follow-ups or replies though. Don’t take it personally.)
There is so much more that I’d like to cover on this issue, but can only handle small bits for now. And I know most like me can only handle a paragraph or two (sorry for exceeding that). Thanks for bearing with me!
P.S. If you are on a benzo prescription and want to get off, NEVER stop suddenly, take your time and do your research (I have no affiliation with any of these groups):
Benzodiazepine Information Coalition
https://www.benzoinfo.com/
World Benzodiazepine Awareness Day
https://w-bad.org/
The Ashton Manual for Benzo Withdrawal
https://www.benzo.org.uk/index.htm
Benzo Buddies Forums
http://www.benzobuddies.org/
Alliance for Benzodiazepine Best Practices
https://benzoreform.org/
As Prescribed documentary trailer
https://www.asprescribedfilm.com/