Hello everyone!
Thanks to the people who called in. Appreciate your time, effort and energy. Thanks to all who wanted to call but were unable. I am grateful we have such a kind and caring “benzo family.”
I had every intention of recording the call but forgot to do so. I am sorry. Benzo brain is still a real phenomenon for me. Here is a recap of the call:
There were five people on the call with me. The callers were from Oregon, New York, San Diego, Pennsylvania and Holland (!). I didn’t ask if I could announce their names here, so I won’t reveal identities.
We heard people’s personal accounts of their benzo trauma and we listened to ideas about how to best get the word out to doctors and the public about the dangers of benzos.
The five callers agreed to share information with each other, and they agreed to each set up a time I can contact them to be held accountable as I go forward. I will be calling venues tomorrow to find the cost of a gathering space. I will also be asking local hotels for discount rates for people who are traveling to the summit.
We discussed the format of the summit, although it is still taking shape and form.
If you want to get involved, please send me an email. I will be holding another conference call in the future as we move forward.
One thing we all agree on is that the laws need to change around the prescribing of these drugs. All of us want to protect others from having to walk in our footsteps. It may take time, but hopefully we can get the FDA to regulate these drugs.
It was very nice to listen to others who are in the trenches. I hope the call wasn’t too triggering for anyone. We did discuss that possibility at the beginning of the call and urged anyone who felt too revved up to hang up. We didn’t have that happen, however.
Benzo Summit, Summer of ’14, To Infinity And Beyond!!
Dear Jennifer, I’m sorry I wasn’t able to call in – nor am I able to help with your starting the summit. I have been finding such encouragement in your site the past few days since I have been reading your words. I am two months behind you in a cold turkey after almost 16 years of benzos – all starting with being put on Xanax after weaning my 23 month old from nursing – my stop to nursing was sudden due to I was in the hospital with the flu – when I went home my daughter wouldn’t nurse and I was engorged. PMS or something due to hormones not being settled set in and 2 months later I was put on xanax. Within the year I was sick, I was c/t – reinstated, spent 6 years tapering from 3 mg to .75 mg a day and then almost 10 years searching out what was the matter with me – I was in tolerance and had no idea. I c/t off 1 mg daily by the suggestion of my pharmacist and psy at the time.
I am 30 months out and still having windows and waves bouncing back and forth – not stable at all. Many of my sxs are gone and what I do have left isn’t as intense – like my nerve burning isn’t as harsh nor does it cover my entire body – just hits areas like chest and arms when I’m in a wave. My waves have turned to so mental – well they have always been mental but now that is what they are more than both.
You give me truly encouragement seeing you are healing. I wish I could help you in some way but I’m not able to right now. Maybe in the future. I’m holding on that healing does happen, that the tears stop flowing and life will be good one day. I do have days where it is good, it just doesn’t last. I woke this morning feeling so calm and at peace, I was able to just lie in bed and enjoy being normal for a few hours, but as the day went on I changed. I do EFT which helps to a degree, it is my strongest coping tool. I live in WV so I can’t be out much at this time of year. Tonight we are to go 3-5 inches of snow. Spring will be here before too much longer – then I hope to start some flower pots.
Take care of yourself and don’t let stress of whether the summit gets in swing this summer or next be too much for your system as you still recover. hugs, Sally L
Dr. Leigh,
I would love to be a part of this. my journey is far from over but awareness needs to be spread about the dangers. I don’t want to be a victim anymore! I want to speak up and stand strong for those here (in Canada) that have not been enlightened as I have!
http://recovery-road.org/impact/
Jenn, I am really in lots of low back pain and nothing seems to relieve it now. Maybe you can help me understand. Two months ago My backed started hurting badly, then eased up a little then strained it again, cronically hurting, then I was so desperate that I tried taking a little of my benzo drug again, didn’t really help much, so today finally went to the Dr. to have it checked out, Dr said x rays look good so he prescribed me prednisone and a muscle relaxer which is an GABA antagonist.. I’m so depressed and in so much pain, I can’t believe that these Damn benzos could cause all of these problems. Any input about the matter would sure be appreciated. thanks in advance Brian
Brian, low back pain is common complaint in withdrawal. For some it is very bad. Only you can decide how to cope with it, whether to medicate it or not. Personally, I wont take anything for my muscle and bone pain. Prednisone is a very powerful medication. So are muscle relaxants. Google them so you are educated about them. I am not sure that doctors know why we are in so much pain in wd. But we do know that in time, it gets better. Hope yours lifts soon.
Jenn, thanks for answering! I know about the prednisone and muscle relaxants. I hate that I’m taking them.. Its that it got so intense that I couldn’t stand it any longer. I couldn’t believe that all because of Benzo use destroys us from the inside out! I know its true but If someone would have told me this years ago, I wouldn’t have believed them.. by the way, Its useless telling ortho doctors that the problem is stemming a year later by discontinuing benzos. Drs have told me that its impossible for benzos do all of that.. You and the rest of us here sadly know better right?
Good luck with everything and also thanks for all the kind replies! well appreciated!!
Brian do the meds you are taking now help? I wonder if the docs really know what the damage is from benzos and do they know that prednisone will help? I wonder if they are just shooting in the dark??
Jenn, The prednisone is only to be taken for 7 days and taper each day of the seven days. Its to combat the inflammation in the muscle. The baclofen, the muscle relaxer is to be taken 3 times a day as needed and I was given 2 refills and scheduled for physical therapy for a weeks,
The medication seemed to help instantly.. I do not know if it will be a continuing help but as for now I am not sitting or standing in wretching pain in addition the full range of motion seems to be returning. As far as the anxiety, well the prednisone is making it worse but as I stated its only for seven days.. I was trying so hard to weight it out because like you and many others I really don’t want to take pills anymore, because I know its can a be a dead in road. Its been a year for me now off the benzos and during this time I have really suffered a lot mentally, and social. just when when I began to have longer periods of good windows and feeling somewhat better mentally, the intense lo back pain hit, The pain would not let up any, super stiff low back muscles, with painful spasms! its been very hard for me in withdrawal for one main reason is that I have a Wife and 8 year old Son and even with the horrible symptoms I have to a least try to be a little functional for their sake. I haven’t worked since I started my taper over a year ago but I still have had some responsibilities that I have had such as get In the morning help get my Son ready for school, then drive him there, pick him up in the afternoon and perform some household duties that needs to be done while my Wife is working.. Living with a person in withdrawal can be very trying and as we all know most people really have to walk in that persons shoes to understand. As I’ve mentioned before I’m glad that I found this website, it has brought relieve to know that there is thousands of people in the same dilemma and are suffering tremendously as well.. I use to just think that all of this was just one of my character flaws but now I know better and I owe that to you and everyone who shares their pain on this website….
Brian I’m so pleased that it helped. I wasn’t aware that we had that degree of inflammation but it makes sense. I hope I didn’t sound as if I was inferring you should not be on the drugs. We all need to explore what will help us recover.
I know it must be hard on our family. Our caretakers. I’m glad your wife is standing by you.
Let us know how you are doing. Thanks for sharing with us what is working for you. Jennifer.
I IPhone, therefore I err.
Dr. Jennifer A. Leigh Innovagardens.com We grow great people through therapeutic gardening. 650.238.4125