Click on the link above to review the TOA with the Mercy Center.
To date, I have had one person confirm that they wish to attend and are willing to send a deposit. We need nine more within two weeks.
Should we not reach the goal of ten paying guests for the Mercy Center, I will look for other venues, perhaps at a local hotel close to the airport.
It’s important that we talk about benzos as a group, to move forward legislation around them, as well as education for doctors and patients.
I just received results from a plethora of blood tests, and it SEEMS that withdrawal has caused a condition in me that MAY be the cause of my protracted symptoms. More on that to come in a future blog, My point is, we need to discuss things and see if we can find some common denominator that we all have in protracted withdrawal. What if protracted is simply the condition I now seem to have? We need research and data collected to connect the dots.
I am hoping we can get together. I will do my best to keep championing the cause.
If anyone has any ideas, or wants to help me, please let me know.( Adam in New York?)
Warm regards to all
Jennifer
Dr.Jenn, I would love to sign up for this but my fear of flying now and fear of getting lost just overbears me.. What do I do to overcome this?? I could be an advocate for all who are going thru this nightmare but don’t know how to function normal anymore. I’m an educated professional and have completely lost all social and functional skills.. I guess just time will tell if I will be human again. It’s 68 days cold turkey and 11 mos doing the taper from 8 mg. of klonopin. Took that evil stuff for 12 years.. Would love to participate, but so afraid of everything.
Diane from Texas…..
Dear Jenn, and every one on this blog,
You can be sure that if I could afford to come both monetarily and physically I would be there in a heartbeat. However I must continue to work until I can collect my pension in October. Is there anything I can do from here. Write letters telling of my experience being told nothing was addictive about clonazepam, my shrink would not give me Xanax but no problem with the other benzo. Then he quits his position and I am fobbed off to a nurse practitioner who hadn’t even read my chart when I went to see her for the first time but who blithely upped my dose then totally blew me off when I had to move and said just find another dr. Well that could not be done in Saint Cloud Mn, and I subsequently went through ct w/d. How my new GP refused to hear anything about benzo w/d no matter what I said. How I have suffered unbearably these las 14 weeks. It is unconscionable for people who have sworn to do no harm to behave this way. I pray that the harm they have done to me is reversible. Dr Jenn I am so curious to hear what condition you have contracted, as your symptoms seem so similar to mine. Again, if I can do anything, if we all can do something from a distance, let us know. What about phone conferencing?
Hi Diane.
Can identity with the fear,
Fear is a symptom of withdrawal, it is constant with me,
Fear of going out and fear of being on my own.
I just live in hope that one day all will be a distant memory.
I’m sure it will be!
Wish you well.
Martin.
Hi Martin, just to let you know I’m praying this will get better. It has improved in certain ways because 68 days ago my sister was afraid I would have to be locked up somewhere. I’ve always been able to travel and live life somewhat normal with some anxiety, but it is magnified 1000 times when the klonopin stops. Seems some symptoms get better but you start noticing other things. Yes I have improved but I know my brain needs to heal a lot. Just time and get some kind of support. I don’t have much of that because no one wants to hear the craziness. We all know this is real.. I’ve had Drs tell me that klonopin should have been out of my system within 72 hrs.. Lol..lots of horror stories.. They wanted to give me more drugs and I refused then they said I needed to see another psych for depression and that I might be bipolar?? Go figure.. I told them to research this evil med called klonopin… I could go on and on.. Maybe we can talk sometime.. I could write a book…
Diane
As others have written above,I would come in a heartbeat but I’m in Europe and my withdrawal is killing my finances.If I can help from a distance,please let me know.I think this summit is a great idea,I’m surprised that there aren’t more people.
Hi Diane.
I would be willing to talk to you sometime as l know how difficult the early days of withdrawals are, the only thing is I live in the uk.
Dont know if you have a skpe address?
My email address is mr.m.olly@hotmail.co.uk
if you or anyone on this post would want to correspond this way feel free too email me as nothing helps more than someone who can identify with withdrawal.
Wish everyone continuing healing.
Martin
London England.
I would love to be able to attend as well but am still dealing with so much physical anxiety. It is getting very old. I have severe abdominal butterflys ( (I don’t really know how to explain them) and also heart pounding. I was also relieved in an odd sort of way that many of you are also dealing with fears that you may not have had before. It can be debilitating but I am trying to fight through most of it and just do as much as I am able to. What is causing that? Is it just that our brains are all out of whack? I sure hope that will all improve for all of you as well. I am very sympathetic.
It has been over 14 months of protracted w/d’s so I am also very interested to learn more about what your bloods tests are showing, Dr. Jenn. That may be a real tool in solving this unbearably painful process. Thank you from the bottom of my heart for your being such a crusader in this arena and that you continue to send all of us words of encouragement and hope. We all love you!! Linn
Dear dr Jenn,
I am surprised as well that you haven’t had droves of people coming but I suspect it’s because most of us are still so sick and our finances have been affected by this crazy withdrawal. I feel badly that you are having to soldier on without more support. Come on you people out there, if you can get involved! I am on benzobuddies every day and wondered if I am allowed to mention this site and encourage them to follow you Jenn. You have helped more than any other source. Thank you, thank you from the bottom of my heart.
Ginny
Thanks Ginny for the kind words. Colin did put a link to the summit. But I understand most people on BB are still very sick. If we don’t get enough people to reserve the room at Mercy Center, I will host it here at my house. There are local people who can come, or people who can fly in and stay close by. I am near SFO. We will make it work. It will be what it needs to be. I trust that. 🙂
Linn
The fears will go away. I had the STRANGEST ones… really, really out there. No more. Gone. I am not really anxious too much either. I did wake up in the middle of the night drenched in sweat and my heart took off like a bullet… pounding.. racing.. GO Figure. I do my best to accept it and allow it to calm down when it is ready to. I haven’t had that happen in so long, it was strange. I had taken a lot of B 12 that day, so I am backing off of that. 🙂 I’ll post about my blood work and what it may mean for us in WD soon.
I love you all too! you have no idea how much. You have become my family. HUGS!
Thanks Elfin
will keep you posted.
Dear Dr. Jenn, That sure meant a lot to me that you would take time to answer my email personally. I know you have a busy life but it is so obvious how much you care and want to support your benzo “family”. It is wonderful to be part of your family as there can be no better understanding. I wish so much that I could meet you in person but we live in Iowa and that is a rather long trip to CA. If we ever have the chance to visit again you will definitely be on my “must see” list.
I was thinking about the fear issues and wonder if so much of that is just coming to the surface after years of feelings being suppressed by the drugs. Since our emotions are so dulled I supposed that could happen. What do you think? I was on Klonipin or some sort of benzo on and off for almost 30 years so know I am fortunate to be as far along as I am. A few months ago I wasn’t even able to go to church. Now I am going to a Bible study and having people over almost once a week. Amazing. I still feel that I have a long way to go but am definitely seeing a lot of progress. I give most of the credit to God and know He has been with me all the way. It does help to have a deep faith and I sense that you have that as well.
Wondering if you have tried anything that has helped you with anxiety and physical symptoms of that. I think the severe stress in my abdomen is one of the most uncomfortable. I have tried passionflower, L-theanine and Tru Calm. These may help some but sure not like the benzos. Also need counsel about insomnia. I am sleeping more than before but still only 4-5 hours. i started taking a half of an anti-histamine and hope that is safe. Have you had an issue with sleep and if so any thoughts on what has helped you.
I love hearing about your garden and am really anxious to be able to be out in the dirt. It is very therapeutic but know my garden will never hold a candle to yours. Well, it helps to be in sunny CA. We have also had such a bitterly cold and severe winter that I am afraid I have lost some plantings and shrubs. I will see soon. All the snow is finally gone.
Well, I have gone on long enough. I don’t want you to fall asleep. HA!! Blessings and love, Linn
Sent from my iPad
Linn
the fears will go away. I doubt they are all your underlying issues. Mine were not. They were just so crazy. I gardened to help with the anxiety of wd. And I watched a lot of movies. chewed a ton of bubble gum. 🙂 The anti histamine might help. Many people take in wd. Just avoid booze and any supplement that hits GABA. I don’t think that we have to relearn how to cope with emotions from being blunted from the drug. What I feel now is just what I felt on the drug to be honest. I don’t have an issue with my old emotional crap being a problem. Try not to worry about it. just accept each day and cope with what is on your plate that day. Tomorrow will arrive, with all of its own misery and worry and JOYS…. soon enough.
Hugs
J
Martin, thanks for your e-mail address. Here is mine if you or anyone wish to talk or have certain questions about this horrible nightmare we are going thru.. I can’t remember enough sometimes to actually put two and two together. I know it has been one year and 2 or 3 weeks since the taper and then cold turkey off all meds. I forgot that I also was given many sleeping pills and other meds that I just quit taking. Ambien, restoril, choral hydrate, temazapam, I can’t even think of the rest!! The Drs just pushed and forced all these down my throat.. Craziness!!! I was smart enough to stop them. Anyway here is my e-mail address dinaday@sbcglobal.net pleas feel free anyone to contact me. It helps to have support from people who know and care that all this is real. We look normal on the outside but inside we are living a nightmare. Hope to hear from you.
Diane
From Waxahachie , Texas
I really appreciated your response and am excited when I see an email or blog from you. There is always something encouraging in what you share and know we all need that. It is so helpful to be able to communicate with others who understand as many people ask how I am doing but I almost hate to be truthful as they can’t comprehend this struggle and feel they think I should be able to leap over tall buildings by now. Well, that’s OK. I’m glad they haven’t had to go through this but also know that is not for this I would not have had the new friends from your post either.
I was interested that you mentioned not to take anything that would affect the GABA receptors. What would those supplements be? I have been looking at a product called ProVanex and that has a small amount of phenibut in it but I am afraid to touch that. I know that is used to helped with the anxiety associated with withdrawals. Do you have any information about this? I sure don’t want to withdraw from anything else but could sure use some help with the insomnia and anxiety. Thanks.
Sent from my iPad
Phenibut hits gaba receptors and many have a hard time getting off of it. It has a withdrawal syndrome to it.I don’t know of anything that works on the anxiety of wd except the passage of time. Your receptors will heal and you wont be anxious forever.
Looking back on my own recovery, I am grateful I didnt take anything else to try to dampen withdrawal. THe pheno I took the first few weeks was all I really took. I did try an old tricyclic for two days. YUCK! What we have learned from so many people going through this syndrome is that psych meds DON’T help with wd, and they often hurt. Im not an MD, so I cant give you any advice that might be construed as medical advice. I can only report what I have seen in people who are in wd and who have shared their stories of trying meds and supplements.