It’s hard to suffer from an illness that isn’t recognized by the medical community. It’s even harder to suffer from that illness when it was caused by the very people who don’t recognize it: doctors. It’s incredibly frustrating to be told misinformation about our illness by those doctors. It’s like salt rubbed into the wound. Here is what we want doctors to know about benzodiazepine withdrawal:
- Benzodiazepines can cause chemical dependency in susceptible people in as a little as five to ten days. Dependency has nothing to do with an “addictive personality” and everything to do with DNA mutations that allow the drug to harm the brain. There is no research (yet) to indicate what these mutations may be, however, there is some indication that the MTHFR gene mutation may play a role. Benzos should never be prescribed for more than a few days. The prescription insert provided by the manufacturer indicates no more than two to four weeks of continuous use. Even this timeframe may be too long for some susceptible individuals.
- Benzodiazepine withdrawal symptoms occur because the drug changes the brain. The drug causes down-regulation of the GABA receptors. It is this chemical brain damage that is at the center of benzo withdrawal suffering. There may be other changes in the brain as well. More research is needed.
- A slow taper is the best way to get off of the drug. No more than a ten percent cut at any time, and a hold of one to two weeks, or longer is recommended by Dr. Heather Ashton, the leading authority on benzodiazepine withdrawal. It would be helpful if doctors wrote prescriptions for the amount we need so that we can have the drug compounded, otherwise, we are left to our own methods of reducing the dose. These include water titration, dry cutting, and using scales. All of them are clumsy and rife for errors.
- Rehabs and detox centers are not the way to help a patient get free from a benzo because they use a taper schedule that is too fast. Also, these types of institutions are notorious for putting people on other powerful and damaging psych meds—get off of a benzo but come home on a handful of new drugs.
- Withdrawal symptoms can occur even while on the drug. This is known as tolerance withdrawal. We may have had symptoms for years that have gone undiagnosed for what they are. As we taper, we may acquire new or more intense benzo withdrawal symptoms.
- The anxiety, terror, panic, or paranoia that is common in benzodiazepine withdrawal are not the return of underlying “disorders.” They are the result of the changes in the brain from the drug and they will resolve in time as the brain heals.
- Prescribing psych meds for benzodiazepine withdrawal symptoms is not helpful and can be harmful. Intrusive thoughts, OCDish thinking, and behavior, as well as anxiety, rage, depression, fear, paranoia, panic, hallucinations, etc., are not indications of a new (or old) mental health disorder and should be viewed as part of the healing process.
- Dismissing our benzo withdrawal symptoms as “in our head” isn’t helpful. We want you to know that we value your support and want you to become educated about the process of withdrawing and recovering from a benzo.
- Benzo withdrawal can last for many months, if not years, as it takes the brain quite some time to heal. The central nervous system needs time to calm down and recover from the down-regulated GABA receptors. Healing is not linear and is punctuated by “windows” and “waves”. We can feel better in a window only to be sick again in a wave. Even years off the drug, some people can have a relapse of withdrawal symptoms.
- Alcohol, vitamin D, B, magnesium and fish oil have all been known to increase benzo withdrawal symptoms. Also, chamomile, kavinace, kava kava, valerian, and phenibut, work on GABA and should be avoided during benzo withdrawal.
- Although we are aware that there are no drugs that can cure benzo withdrawal, we do want your help as a doctor. We’d like you to rule out anything other than withdrawal and we’d like you to reassure us that our symptoms will one day go away. We mostly need support and reassurance.
- In order to help us the most as we withdraw and recover from the benzodiazepine that we took as prescribed, you need to educate yourself about benzos and benzo withdrawal. We’d be incredibly grateful if you’d take the time to learn and to understand the very serious health challenge that we face.
- Most of all, we’d love it if you’d stop prescribing benzos for more than a few days so that you don’t inadvertently harm anyone else.
I love this and it is very validating. I have been slowly recovering from an antidepressant taken for post partum depression 4 years ago. This med injured my brain and gave me metabolic syndrom. It was a very low dose benzo that actualy saved my life. I was able to sleep atleast a little bit. This benzo allowed me to be a mom, keep my job and get therapy for anxiety. I stayed on it for 2 yrs and knew what I was doing. I am grateful that I had time to stabalize on this benzo and it would have been terrible if I had only had 2 weeks to recover from the severe illness caused by the SSRI in the wake of PPD. I was smart about my benzo use and only took .5 and then did a liquid taper off when my body was ready. If doctors were unwilling to prescribe benzos long term then we could not prep our bodies and complete very slow tapers and hold during stressful times. It took me a year and a half to get off of .5 and I still have wd. I agree with the majority of what you said, accept the last statement. Patients need choices and time to stay on a med if they need it. Patients need to be encouraged off toxic benzos though and not held captive on them by a system that sees them as weak. There needs to be better meds and methods for handling hormonal imbalances such as PPD and trauma symptoms that do not add mental illness to an already suffering patient. The atrocity is the total lack of awareness of withdrawal. I do not regret my benzo use, but I knew what I was getting myself into.
Well Done!
This is very good ! I am going to print this and send it to the local psych unit and doctors that badly need educated on this matter.
Thanks so much
What an amazing blog! It would help if MD’s understood that benzodiazepines impact our ability to think clearly, focus, and even sustain our jobs. Some people may need assistance filling out SSDI or other types of paperwork.
Jennifer, looking forward to posts from your adventures on the road!
Excellent write up Jennifer. I look forward to your NEW BOOK ! Will purchase copies to give to my PCP, THERAPIST & NEUROLOGIST. Also copies for my Medical Group that operates 12 Facilities. Will work with you to get your book placed in North San Diego County. I have said it before and will say it again 🙂Thank you for being a leader. Bless you!
With Gratitude, Jerry
Jennifer, this post is so right on! I can not get over the ignorance of doctors and pharmacists! As for me, I have been off clonazepam 6.5 weeks and I am in the strangest wave. It’s like being stoned! My perception of things is so weird, hard to describe. The way I see and hear things has a hallucinogenic effect. I’m also anxious about things I need to do and about things I may have forgotten to do. At least the physical effects are minimal.
Thank you Jennifer! Dan
Thank you again Jen, what a good blog. Hope you are well, I’m still managing to go outside to feed the birds, but its only 10 feet away from the house. This time last year my hubby and I were on our 3rd holiday of the year, can hardly walk around the block now.
Love across the pond
Jackie
Edinburgh
Hi Jackie, I know nothing of your backstory, but I see myself in your words today. The difference is I’m just a little further down this horrid road. PLEASE keep feeding those birds, they need you. Force yourself to walk around the block, and then another block, and another. Dancing was my life and sanity-saving exercise, still is, every single day. I added some hand weights not too long ago. Healing music, breathing and balance restoring, my singing is getting better, and Oh Hell Yes! bonus, I’m going to be one HOT old lady when this benzo is finally done with me! And it will be, because I’m done with it. In a big way. It WILL be done with you as well, you will make it so. Now go plan your 1st holiday of the year, I just went for a short picnic in a park 3 minutes drive from the house. In 30 degree weather, but the glorious sun was out and felt awesome on my face. Invite your hubby, tell him he’s cooking, do it. Then start planning your next holiday, whatever works for you.
I wanted to respond to several things and people on this blog 8 months ago, I haven’t been able. I promised myself I’d reach out to someone the day Jean came back, for real. March 15, 2017, today. I will now be sending you good vibes from the U.S., every. single. day. I wish you healing, please let us know how you’re doing, we ALL care. Peace, Jean
To the “real” Jean Hardwick, thank you so much for all your beautiful and kind words. You brought a tear to my eyes with your kindness. I too have no background of you but you painted a beautiful picture in my mind of a lovely dancing lady and her beloved husband sitting in the park with no cares in the world, sipping tea and eating buns in the sunshine. You will always remember the 15th March 17 as “Jean day”, and if anyone deserves a special day it is you!
I promise I will keep feeding the birds and perhaps try as you say extend my walk a little if you continue to sing your heart out, and dance like Ginger Rodgers.
Jean all the best and God bless you
Big hugs from across the pond
Jackie x x
It also seems doctors know very little about kindling. Could you elaborate a little on it. Thanks!
Jean & Jackie,
Beautiful sharing… warming… big smiles here !
For you both and every soul herein I share the following:
and I quote- adding in the us & we
“there will be another song for me – us
and I – we will sing it”
from the song MacArthur Park, Donna Summer 1978
SING SING SING !
With Love for all, Jerry
Benzos are weird in that they don’t affect everyone the same, so it’s really hard to give advice unless you’re an expert which there are not many…
Actually there are . Try suffering through it- or being a caretaker of a person suffering through it .
There are many ….
You’d have to be a robot to not be affected by Benzo usage. I wish they were outlawed except for maybe surgery. MAYBE!
There are very few “experts” out there. Most doctors aren’t educated about the dangers of these drugs or the recovery process. The people most educated are the ones who have the lived experience of benzo withdrawal. We’ve learned a great deal over the decades and the Internet has allowed us to share our experiences so that we have a common working knowledge of the dos and don’ts of navigating benzo withdrawal.
Angie, outlawed? Good idea, I agree!
Jennifer, that reply is so right on. That’s what I have learned since I started this agony.
Klonopin causes dp/dr ! That’s the latest from the add specialist who I get my poison off , no it was the d*** head who put me on xanax for. 6 years , it’s called withdrawal. , I hate Drs and will never trust those ***** again
Amen to this, if only I knew 20 + years ago and all I wish for now is Validation from Docs nothing more !