Writing a book maybe - need your help

That's the book that started me on the road to BB. It was also the first clarification of what was going on with me, already six months post cold turkey. I was actually jumping up and down with relieve that my symptoms were not 100% the result of anxiety. My suffering was immense. There should be more literature, well written and supported by those who have gone through this. I think it is safe to say that most of what we suffer from is subjective with a strong correlation of similar symptomology with others on this board. If someone on this board doesn't write a book, then who will??

I have had Brain Healing and Brain Singing

I think it is safe to say that most of what we suffer from is subjective

 

how do you figure that??

 

Hi Parker,  My name is ********* and I took 6-10 mg of Clonazepam for over 18 years as well as many other meds.  The first wall I hit was that I was tired all the time.  At work when I did not have patients, all I wanted to do was lay down an rest.  I practiced Dentistry for over 30 years and started to get performance anxiety.  And when my lease was due to be re-signed I sold my practice and my portion of the building I co-owned.  This took place around May 1, 2013.  I was totally dejected. I had trouble driving due to being so drowsy and I would hardly be able to stay awake in Church and could not keep my eyes open.  I did a cold turkey in July of 2013 and after 3 days of hell my shrink got me back to 4mg.  The following September I had a lot of anxiety and I started to walk a 3 mile route in the area that I live.  That is when I first started having oral illusions, the first was when I pressed my tongue against the back of my lower front teeth I had the sensation that my cuspids wrap around my tongue. The oral illusions continued as I visited my Mom and Dad in Florida when I was working out a lot of my anxiety.  The oral illusions continued to progress due to too much electricity in my Brain.  These oral illusions continued to "Grand Oral Illusions" in and around October of 2014.  The rest is a bit of a long story.  After this time I herd voices that had me do unusual things, some good things and not so good things.  My last Grand Illusion was that of a Lilly due to an aggressive cut in Gabapenten.  During the summer of 2014 I experienced Brain Singing.  This was the most wonderful experience I have had in my life.  It is very impossible to describe, I imagine their are others that have experienced this. Once the voices stopped or came and went I now have some minor oral illusion or tooth distortion.  I am doing very well, especially due to exercise and various medications.  I am having neuro-psych tests to determine if their is any lasting chemical Brain injury.  I do know that my Brain is doing well and I am considering going back to some work, that my include Art, Dentistry perhaps at the level of Teaching.  Contact me if you want to discuss this in more detail. Regards, and my prayers are with you on your quest to write this very important book. ***** email: *******

 

 

Edited to remove personal information. - MindSeeker

Hi Parker,

 

I am a new buddie. I read your article about what is happening in the brain during benzo withdrawal.Thank you so much. Please write your book. It would help thousands going through this wretched experience. I thank God for your writing abilities. You are blessed with a windrous gift. Bless you.

I think any book on benzo recovery has to address how to cope with the time course of withdraawal and healing.  It it is the most difficult aspect for me.

 

I happen to be a Christian and this journey has shaken my faith.  Perhaps that can be a theme if you choose to write from a Christian perspective.  Why does God allow suffering to this magnitude, etc. 

Hello Parker

Are you going to write the book?  It is a fantastic idea.

You have been tremendously helpful to myself and P.  Your positivity, clarity and ability to share information in such a way that the healing brain can digest it and gain comfort from has been a God send.

Your descriptions on what is happening to the brain, how it has been affected by benzo use and how it needs to heal were and are very helpful. 

Also your insights into how certain things feel i.e. windows, d/r, morning anxiety and doom and the reasons why this is so are also helpful.

The golden thread that shines through in all of your posts, that would be so wonderful to have in a book is the fact that you are not alone and all of these these horrific, seemingly negative and very challenging symptoms are ALL actually positive signs of healing and that full healing is coming to all.

Nutritional information and supplements also has been helpful and interesting, more on that would be great.

Thank you Parker and bless you

xTrish

What's the status on this book?  Is there a draft being posted somewhere for people to comment on?

 

 

 

 

 

 

 

Hmmm -- just read all 16 pages of interesting comments and my conclusion, Parker, is that if you haven't already, you should definitely write the book. Reason being that even as an RN and a pretty good researcher, my addled benzo brain has struggled to understand what's happening to me.  People going through tolerance and WD need an excellent and highly readable guide... 

 

Another reason is that a physical book can become a comforting security blanket for those of us who are suffering.  Could you make the cover soft and fuzzy?   I have Recovery and Renewal by Baylissa Frederick, and while it doesn't address many topics  that I instinctively know you can, it was an accessible read that I carry with me on my worst days as a reminder that this isn't going to last, the fear isn't of something real, and many many others have been here and survived.  If I'd had a book with your explanation of what's happening in the brain, I'd have bookmarked sections that were most helpful and gone to them when painful anxiety had hold of me. 

 

As for any religious references, that's clearly up to you, but my preference would be that they be put into a separate chapter and the bulk of the book not mention God.  As a child, I was quite harmed by the church and some religious people, and some of my PTSD stems from this.  I grew up not believing in Christianity, but I do believe in a collective form of life energy that I think of as God.  Most of my friends and many former colleges hold beliefs similar to mine and I think the majority would be put off by a book that discusses medicine and God together.  I worked for years as an inpatient hospice nurse where I had the upmost respect for our clergy team and for any spiritual beliefs that patients and families held.  As a part of my admission interview, I would ask about religious beliefs, and if a patient had none, I would periodically check during their medical decline to see if they wanted to speak with clergy anyway, as some did welcome it when death was near.  I found this to be the kindest approach, and often times atheist or agnostic patients wold be comforted by the presence of clergy, and even by a prayer, but most did not welcome any conversation about religion that they hadn't sought out.

 

Thank you for what you've done on this site -- I'm a big fan!   

 

 

 

 

parker: I think your book is a great idea. It seems like your book could be focused on (as mentioned) those during withdrawal, but with the recent up tic on benzo awareness, it could also target those that will go through w/d in the future, plus those that "lurk" on here without posting, just to learn. Rather than posting my thoughts here (which would be really long and possibly boooooringgggg to many, is a PM alright? Keep going on your dream...it could benefit thousands.

Hi All, I just popped back in after a good long time, and found this post through a thread on long withdrawals. Here at around 5 years out for most of us (from looking at your signatures). I'm seeing that I'm not alone in having symptoms (like akathesia) after all these years. I just got some tests done and my eeg shows nothing unusual, and I was having strong symptoms during the 90 minute test. I have often used a couple vodka tonics to quiet them down for just awhile, even while I know it might be dragging things out by slowing down healing. Have any of you felt pushed to the same thing? Other than that Q. I am really mad-a whole lot of feelings in here!! I'm 55 and it's been 10 years since I had my 'life-altering event' and was put on 2 benzos; Xanax and Klonopin, plus Tegretol (anti-convulsants). I feel like the John Lennon song-"All I Want is Some Truth."

~stasia

ps. nice to see you all again 

Please let us know if you wrote a book. Your beginning post has been so helpful! Thanks.

Hi 52and forward,

I'm not the one who put that header saying anything about writing a book lol, at least I don't remember doing so. Do you have long lasting symptoms also?

Hello -

 

Just a word of encouragement, we do survive these medications and we do get better and we do heal despite them. 

 

Like mostly every individual here, I was terribly, badly off.  I'm not about to try to convince you just how badly off I was, other than to say that I was bad. 

 

My experience has taught me, that there is no substitute to get to the other side, other than to go through the withdrawal to get there.  But the road would have been made much easier, if there would have been support along the way.  That, and the recognition of what it is we are going through, as well as why it is we are going through it.  This is where the medical community has TRULY failed us.  Speaking for myself, it's the trauma of the ordeal that lasts far longer than the actual withdrawals [ordeal] themselves.   

 

I have come to understand that the medications cause our bodies to respond as though they/we were/are in danger, under attack.  The same as if we were in the middle of a war zone.  Our sympathetic nervous system kicks in, and despite our outward circumstances, responds as though our lives are actually in danger.  (hence the "war zone" analogy)

 

The sympathetic nervous system is automatic.  It is our bodies built-in safety mechanism.  We do not control it; it is, as I said, automatic.  If the medical community would only embrace our counter-narrative, and hold themselves accountable, they would then educate themselves, and as a result, further their medical understanding on these and many other psychotropic medications.  But instead, we are dismissed.  Our suffering, minimized.  Because as I stated, our experiences speak counter to their accepted, and tightly embraced, narrative.     

 

Please don't take my strong words as bitterness, because they are not.  Instead, they are a cry of sadness.  Sadness for the needless suffering of people past, present and future. 

 

All of you will get through this.  Trust me, I've been there.  And now - I'm here. 

 

grace, peace & love -

 

eli

Has anyone on BB heard from Parker? She was so active on BB and helped so many people. In any event I hope that she is doing well.

dear Always,

I have not been on the site very much and when I joined in 2018 even though I was off of clonazepam for years it was hard for me  to maneuver around this sight as  I was in.. what I imagine is called, an extended withdrawal. It was not until 2019 that I would laugh hard again and feel emotions I had not felt in a decade and problem solve and organize better.  So I just now had a chance to read some of Parkers work and I too was wondering where she was.  It looks like the last time she posted was about 2018 ish (I think)

 

I sent her a private message a few days ago ,but with my brain not all there..  who knows... I may have screwed that up.  So you may want to try to send her a PM too.  I have to go see if messages are answered in a special area here ..until writing this I was waiting for an email notification, but maybe those are not sent ...so glad I read your post ...ugggg if I hear from her I will tell her you are asking for her.

 

I wrote a paper on an rare chronic illness I have and it touched on benzos  covers the fact that I find since coming off Clonazepam , I can only do the first half of thigs, and the second half of what ever it is, takes 10 times longer.  Park explained that so wonderfully in one of her writings and I wanted to quote her and give her credit as it is a sited research paper.  so if you find her will you please ask her PRETTY PLEASE to message me  ucandoit2018 is the name.  STAY SAFE AND GOD BLESS. 

Has anyone on BB heard from Parker? She was so active on BB and helped so many people. In any event I hope that she is doing well.

 

As we hope for all members, Parker has moved on and is very active in her life away from benzos and away from the forum.  Many people have benefited from the material in her threads and posts.

 

pianogirl

Yes, you should write a book.

 

I think the must have in there really is the lack of formal education for medical professionals.

 

Education solves problems before they happen and it doesnt seem like many medical professionals are adequately trained

 

Teach the dr's and hypothetically they would convey to patients and prevent a lot of these long painful benzo journies which include losing friends, family, and jobs.