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Waking up from a 7-year coma


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This is super long, there are cliffs at the bottom.  I really wanted to be thorough, and share my story and everything I have learned through this experience.  I cannot thank the Benzo Buddie community enough.

 

The start of my success story…

Waking up from a 7-year coma, prescribed dependence and getting free.

 

Introduction

 

 

As you may already be able to tell, this is going to be a little lengthy.  I encourage everyone to read the whole thing, and feel free to share with anyone.  If you are like me, you probably want to skim the cliffs first and decide if it’s worth your time to read fully; there are cliffs at the bottom.

 

Everything in here is my opinion, based on my experience, perspective and research.  Please look up stuff on your own as you go along and/or Google any word or concept that you don’t understand.  I would advise you to take this same approach with anything you are prescribed from your doctor.  I’m not trying to bash doctors, it is just important to remember that doctors are human and not superheroes and don’t know everything.  General Medicine or Family Medicine doctors, serve a good purpose, but are rarely experts of much.  I am not claiming to be an expert in regards to anything, but I have educated myself and am more knowledgeable about Benzos and Benzo withdrawal than any of the doctors I have personally met.

 

 

We will, for the most part, be talking about Benzodiazepines.  The most famous Benzodiazepine is Valium, though there are many other popular & highly prescribed variants, such as Xanax, Klonopin & Ativan, they are almost all the same mechanism, differing in degrees of potency, metabolism and half-life.  Some modern sleeping pills such as Ambien and Lunesta are also in the Benzodiazepine ‘family’ they are like a mini super dose, with an insane half-life, being almost completely out of your system in 8-16 hours. We’ll be abbreviating Benzodiazepines with Benzos, with Benzos consisting of any of the Benzo family, but in my case for the most part, we’ll be referring to Klonopin.

 

My story is about how easy it is to become chemically dependent on Benzos, how they take over your nervous system, the difficulty and process of coming off of them. 

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Setting (from the start).

 

 

It was right around 7 or so years ago, that I walked into my doctor’s office for a regular check up.  I’ll give you a little bit of a setting as it pertains to the story.  I was 27 years old.  I was in a very rocky marriage for about 5 years, I had 2 children, ages 2 & 4, and I was working a full time corporate job with a pretty good company.  About a year prior, I had quit playing in a band that was moderately successful.  My ex-wife had given me an ultimatum to either quit the band or she would leave with my kids.  I was a little bummed to not be pursuing my passions, but I didn’t want to lose my kids. 

 

How I first was prescribed Benzos.

 

An attempt to quit smoking.

I explained to my doctor that I was exercising pretty regularly; she noted that I was fairly healthy and that I should continue to try to quit smoking, to which I agreed.  I also casually told my doctor, that I was having a little insomnia & felt stressed from not playing music.  The doctor had insisted that I try Zyban.  Zyban is an SSRI or antidepressant normally distributed as Wellbutrin.  Many of the users of Wellbutrin had noticed they had lost the desire to smoke cigarettes while taking the medicine and so the manufacturers decided to market it as drug to quit smoking.  They knew the stigma often associated with antidepressants, so they renamed it Zyban and trained their pharmaceutical reps to urge doctors to suggest it as a way to quit smoking.  So I respond to my doctor, “what is the drug?”  She explains that it is Bupropion or more commonly known as Wellbutrin and that taking it for roughly about 6 weeks should help me to quit smoking and could have some other added benefits, like better sleep & mood, and might help with my disdain from not playing music, but those would be, “only very mild and helpful side effects.”  She assured me that I shouldn’t worry about any of the other side effects, as those are very rare.  The only personal experience that I had with antidepressants was when my mother was given it for a few months when I was in high school; she morphed into a different person that I did not know.  It was super scary, she was just kind of blank, she got off of it right away and returned to normal shortly after.  I was apprehensive but I thought, “I trust my doctor, I’ll give it a try.”

 

Selective serotonin re-uptake inhibitors (SSRIs).

It was a Saturday morning, I had access to work by myself on Saturdays and catch up the excess work left over each week.  I really enjoyed working Saturdays, I would crank the music, be focused, get junk done, and get some overtime.  This morning I think it was my 3rd dose.  I remember as I was pulling up to the back of the building, everything looked different, not like hallucinations, but just everything was tinged orange like with an Instagram filter or something.  I went to the door, turned off the alarm, and made my way to my desk, but everything was way off.  I was unfamiliar with my surroundings, and I kept asking myself, “What am I doing here?”  I tried to shake it off, but I kept having this mix of metallic taste, and plastic like smells.  I was unable to focus and I was getting extremely agitated.  I kept thinking this must be a weird side effect; maybe it will go away if I get some coffee, maybe it will go away if I drink some water, and maybe it will go away if I eat.  But I didn’t want to eat, or drink or anything.  I just wanted to escape this agitation.  I decided I would go outside and have a smoke.  I lit my cigarette, and it was instantly disgusting, and I didn’t want it.  Now I was annoyed because I wanted to want a smoke.  Whatever the mechanism is that stops the desire for smoking, is a giant blanket that stops the desire for a whole bunch of things.  I was getting angrier and angrier, I decided to lock up and go home.  When I got home, I was so angry I just laid on the floor and told my wife to stay away from me and keep the kids away from me. After a couple days I felt pretty normal again.  That was the last time I took or will ever take any form of antidepressant.

 

How about trying a mild medicine, Klonopin.

Sometime several weeks or months later I was back at the doctor with a mild shoulder injury.  Again the topic of smoking came up and I explained to her that I am not taking any form of SSRI no way, no how.  She said that she had another idea; I should try a medicine called Klonopin.  She said the “K” is a Benzodiazepine, a cousin of Valium or kind of like a super mild form of Ambien.  I had taken Ambien before, and didn’t have any problem with it.  I actually kind of like the weird psychedelic sleep state it gave you.  I was like “Ok”.  She said to try to quit smoking and take one .5 mg tablet before bedtime.  So I did.  The first couple weeks I didn’t really notice much except that it was working to help with my sleep.  After about week 3 however things started to get ‘different’.  I noticed that I wasn’t really stressed much, about anything, ever.  I am normally pretty easy going, but this was to like a super human level.  I didn’t really think much of it.  I remember having a few friends over for a BBQ and while I only had like 2 beers, I was completely hammered, like passing out, drooling drunk.  I didn’t really make the connection at the time, I thought I must’ve had an empty stomach or been hungry or something.

 

 

I became more and more indifferent. 

A few months later I separated from my wife and eventually got a divorce.  I am not blaming this outcome on the medicine, just maybe my state of tranquilization helped spur it along.  In other words, I was most likely getting a divorce at some point, but because of my medicated state, now seemed like the obvious time. We had tried to work things out for years, but I was just worn out.  I could not fix things and I didn’t want my kids to live in a house with non-stop fighting. If anything good came from this medicine, was that it gave me the emotional disconnect to get out of a toxic relationship.  On the other hand, I feel like maybe I could have handled things maybe a little more sensitively or maturely.  It’s hard to say what role the medicine played in all or any of that, as those circumstances are never pretty.  I don’t know if the process would have been any smoother or if things would be as tough now as they are if we had split up under different circumstances, it’s impossible to say.  I just know that regardless of anything I have to be accountable for my own actions.

 

After a divorce.

At this point I dove into work and just tried to figure out where to go or what to do next, the weird thing with the K was that I had to go to the doctor every 3 months to get it refilled.  I didn’t think anything of it at the time; though later this would be a red flag that maybe this medicine isn’t that benign.  I explained to the doctor what I was going through and what I was experiencing with the medicine and she suggested that I stay on it at this time, as it, ‘may be helpful to you during this time’.  I was like whatever.  She also told me that if I was having a bad day with everything that I could break the pill into 4ths and take a 4th as needed or take 1/4th 3x a day w/ breakfast, lunch & dinner.  And that’s what I did.  I wasn’t really thinking about what the medicine was doing, I just knew that I missed my kids, and that I had to continue working, and this medicine somehow seemed to be the glue that kept all that together. 

 

Lucky to make it through this phase.

The next year really only had a couple of themes pertaining to the K.  The first is I became extremely social, going out very often, more social than I have ever been in my life.  I started playing in a band again and was partying a lot.  I had a complete numbness to consequence.  I would equate this to being alert yet sedated to risk or ‘tranquilized’, hence the name tranquilizers and/or sedatives.  It is a hard thing to describe.  During this phase I didn’t really give any thought to drinking too much, or drinking and driving, or being careful “socially”.  I was careless with people’s feelings and I was careless with my own.  It’s not that I was in rebellion or didn’t care or anything like that, it was just that I didn’t have the wave of thought that would normally make you careful or hesitant.  Part of this was obviously exponentiated by the divorce and all of that, but the line was non-existent for me.  This was especially odd when it is my personality to be more cautious.

 

 

 

Feeling the hook.

There were 2 scenarios that came up with running out of Klonopin; the first is I just ran out once.  I didn’t really know at the time that I ‘needed it’.  You see, I never craved it or got high from it or anything like that, it was almost like hunger, if I missed a dose, my body would say, ‘hey you need to take your medicine’ and I would.  So it ran out, and the next day, I thought I was going to die, I was extremely sick, ice cold, shaking, I called in to work and slept all day.  I called the doctor’s office and they called in a partial refill until I could get in.  As obvious as that sounds I didn’t really make the connection directly, that it was the medicine, I thought I might have had a bug or something, and not having the medicine was just making me more uncomfortable or something.  Later that year my car got broken into and my gym bag was stolen that had my medicine in it, I knew I needed more medicine immediately and this is when I realized that there was a problem with this medicine.  Again the doctor’s called in some more medicine and I knew I wanted to get off of this stuff, but I still didn’t fully understand what I was up against. 

 

I don’t know why I am still taking this.

At this point I really felt like the medicine wasn’t doing anything I could really see, and I didn’t really know why I was taking it, other than not having it would make me ill.  I started to cut the medicine down and started to notice some weird patterns pop up.  A mild feeling of paranoia and cynicism took over.  I got really annoyed with most of my current circumstances, I was frustrated with my job & my band, I didn’t like them anymore and became slightly paranoid that they were bad environments, that people were somehow taking advantage of me.  I felt held down and I wanted to get free. I sort of started to passive aggressively rebel against everything, I eventually got laid off from my job, and decided to quit my band.  I developed this teenage; ‘screw everybody’ mentality mixed with nonchalance and didn’t really feel any consequence to burning any bridges.

 

Round 1

 

Cold turkey.

At this point I was taking what I thought was a very small dose of Klonopin at only like 1/8th of a pill 3x a day.  My girlfriend and I were looking for a change of pace and decided to move to Austin from Dallas.  I weaned down a little more and as we were packing up, I decided I weaned down enough and just chucked the rest of my medicine and we moved.  I felt I was taking an irrelevant dose at this point, (way wrong).  I’ll go into more detail later about the easy to misunderstand dosing of Benzos. 

 

6 months of hell.

When we got to Austin, I felt ill for a few days, but overall I thought I was doing pretty well. 

 

Panic attacks.

I have had a few panic attacks in my life.  When I was 18, I pretty much had a life changing nervous breakdown, and from that point I experienced a few minor panic attacks.  In total I would say that I had a total of between 5-10 total anxiety attacks in my life before Klonopin.  I learned to manage them using coping mechanisms.  Again they weren’t that frequent or severe so I really didn’t give them much thought.  I would describe them as an adrenaline rush, with a feeling of fear or doom.  They would usually only last about 15-30 minutes at the most with only a few minutes being intense.  Other times they would only be like a 10 second ‘rush’.  I don’t know what triggered them or their underlying cause.  Sometimes they would come in clusters for a few days, and sometimes they would not appear for several months or longer.  But like I said, I became pretty good at managing them and didn’t really even consider them as anything that affected my overall well-being or way of life.

 

Tolerance.

One thing that I noticed with Klonpin, is since I started taking it, I didn’t really have any anxiety or panic attacks, at all, at first.  After taking it for almost a year, I started to have them coming back, minor but still it was weird.  It seemed to be they were just increasingly emerging more frequently and at random.  All the while taking the medicine, it was like the medicine was not working anymore.

 

I must really be screwed up.

So now we’re in Austin, new apartment & new jobs.  I am off the medicine, basically cold turkey.  Our goal is to start playing music in Austin and all of that jazz.  But here is what happened.  I became insanely paranoid with a feeling of fear & depression almost 24/7.  I never wanted to leave the apartment.  I am amazed that I even worked a job.  I began to have intense panic attacks and rage.  I tried every night to drink myself to sleep and not freak out my girlfriend.  She had to feel lonely and helpless during this time.  The crazy thing about this is that I didn’t make the connection to Klonopin.  I thought I was depressed and possibly manic.  You see, I was off the medicine at this time for well over a month or two, and from all I have learned about most drugs at this point, is that usually withdrawal is intense at first and can last for a few weeks or longer but that symptoms should start to diminish.  It is because of this information that I thought it was something non-related to being off of the medicine.  I began to believe that I had some sort of mental issues or psychosis and that Klonopin was a healing medicine to me.  I figured I could just tough it out, and maybe use self-calming and breathing techniques and become better.  I became an expert in self-cognitive behavioral therapy.  I mastered recognizing and re-programming negative thoughts.  It is my opinion that CBT is an excellent treatment option for stress relief and improving your state of mind.  It also my opinion that CBT, not drugs should be the number one recommended treatment for anxiety.  However, my situation continued and became excruciatingly worse.

 

Protracted withdrawal.

I learned of protracted withdrawal well after the fact.  Protracted withdrawal is a situation that is almost completely exclusive to Benzodiazepines and the withdrawal process.  Some people have been known to go into protracted withdrawal while still on their medicine due to tolerance.  Protracted withdrawal is often linked with post acute withdrawal, i.e. an infant born with withdrawal or temporary mental deficiency with a drug-abusing mother.  This is different in the case of Benzos.  There is also post acute withdrawal with Benzos, but we’ll go into that later.  Right now we are just talking about protracted withdrawal.  What is protracted withdrawal from Benzos?  I would invite you at this point to do some google’ing and read up on it, as I am not going to break all of it down or paste a bunch of literature here.  But I will try explaining some.

 

YO GABA GABA

Before we proceed, let’s break down GABA, GABA receptors in the brain and how Benzos work.  Again I am going to speak very generically and invite you to do more research if you are clinically minded.  Otherwise just read on and I will explain the meat and potatoes of the subject.  Your brain functions through a series of communicating agents called neurotransmitters. The head honcho or main neurotransmitter is called GABA; GABA regulates the entire nervous system and regulation of muscle tone, and more.  There are also GABA receptors in several organs including the stomach, kidneys, bladder and more.  Benzos work basically by ‘enhancing’ the effect of the GABA receptors.  In your brain you have chemical reactions that make you excited and chemical reactions that make you calm.  Your brain works on it’s own to balance these every split second.  When you get startled and have an adrenaline rush your brain gives you the chemicals you need to for fighting or running.  Too much of these chemicals unchecked and you have panic and in extreme cases seizures.  Benzos have become the #1 seizure medicine.  Your brain also naturally produces the chemical reaction to make you calm, allowing you to breath at a normal rate and sleep, amongst other things.  In reality it works more like a sink governor, allowing a natural flow of energy to function and think, and increases or slows that flow, as the brain deems necessary.  What happens when you use Benzos long term, sometimes in as little time as a few weeks for some people, the brain stops relying on it’s own GABA to calm itself down.  You see, an outside chemical is stimulating the GABA, and our brain is very lean, and does not want excess, the brain and body are constantly fighting to maintain perfect balance.  When something from the outside starts doing something the brain normally does on it’s own, it stops doing that action on it’s own.  So now your brain is dependant on the outside chemical to regulate your GABA.  When you remove the chemical, the brain is not quick to change it’s course and you have acute withdrawal, where there is very little to no GABA stimulation.  This is why severe alcoholics who detox too rapidly or quit cold turkey can go into seizures.  Alcohol also works on GABA.  And this is also what also happens to people who abruptly quit Benzos after long-term use.  (Long term being as little as a few weeks for some).

 

Back to protracted withdrawal.

Protracted withdrawal is when you are past the stage of acute withdrawal but you are still having many of the issues that come with the withdrawal of Benzos.  The reason for this is that it can take anywhere from 6 months to 2 or more years for your natural GABA receptors to heal and function as they did before Benzos.  This isn’t really the case in drugs like alcohol, cocaine and opiates.  Usually the damage that is done by those drugs is done.  The body goes through withdrawals and goes forward as normal as possible with the toxicity out of the system.  Yes, there is some long-term damage and a healing process with those examples, but typically not encompassing of the entire nervous system.  Feel free to research more about those on your own.

 

Paranoid.

So what I was left with during this time was fear, extreme fear almost 24/7.  This lasted for close to a year and wasn’t going to let up until I either I reinstated the medicine or my brain healed.  It is important to note that this ‘fear’ was not mental, but rather chemical from my brain. My nerves were basically firing at all times, with no slowing down.  The governor was off the clock, and the chemicals were gone as well.

 

If I would have stayed off, I would have healed in time, maybe a few more months, maybe a year or more but I would have had this all behind me by now.

 

Round 2

 

If it helps you, you should maybe try it again.

My girlfriend and I moved back to Dallas, and I immediately went to my doctor and explained to her what I was going through.  Now mind you I did not have the knowledge of the information I just shared with you.  I just thought that I was depressed or mentally sick some how.  My doctor assumed that I was extremely stressed with the move, and possibly mildly depressed, she suggested I reinstate Klonopin and just see, ‘how I do’.  So I did, and it was a miracle, I was back to normal! I reconnected with friends and family and got back into playing music again and found a new good job.  When I was in Austin I had learned how to play poker, it was one of the few things I could do to successfully pass the time, and now that I was in a temporary better state of mind, I began to understand the game better and was winning at high rate.  The band I was in eventually broke up, but things were still going pretty good overall for about a year or so.

I was reinstated with the medicine, my receptors were saturated, and I was moving into tolerance withdrawal.  Tolerance withdrawal is when you are taking a chemical, but you have become tolerant to it, your body starts to slowly go into withdrawal from the medicine while you are still on it.

 

Then things started to get pretty weird again. 

I started to feel flat out stupid.  My memory and attention span were very limited.  I really don’t know how to describe it any better.  It was massive, yet subtle at the same time.  I would just go blank all of the time, and forget things.  It wasn’t like your normal forgetfulness, where you would be like, “I’m having a hard time remembering such & such.”  It was more like you would forget things and not even know it.  Amnesia.  Others would rarely notice, and I would rarely notice.  I started to lose the desire to play music or hang with friends.  I was having a hard time playing poker without just going into a fog and playing terrible.  It was around this time I got a job at a music school.  This was great because it kind of forced me to be around music and musicians and it was really close to home.  But it was still weird; I continually became more and more dumb and dull.  I continued to work and eventually was promoted to GM of the school.  This was a lot of stressful work, rewarding, but long hours and stressful.  The school was also in a shift with some new ownership that was complicating the business as well as the day to day routine.  I felt like at this time I needed to come off of this medicine as I was having a hard time focusing on the smallest details. 

 

You could take the medicine indefinitely.

I went to my doctor, and my doctor suggested that I stay on the medicine ‘indefinitely’ and that it was probably stress that was causing my apathy and cloudiness.  I knew it was the medicine that was doing this to me and I needed to get off of it.  I didn’t want to cold turkey like I did last time, so I decided I would try something different.  I would take all of the medicine I had left and break into tiny pieces, like 1/16ths, and wean down over a few months from 1/8th 3x a day, 2 1/16th 3x a day, to 2x a day, etc. until I was down to only taking crumbs a few times a day.  Throughout this process a couple different things started to happen. One is that I started to regain some clarity, not fully, but in bits and pieces.  Secondly, I started to play my guitar again and was getting excited about the possibility of trying to play in a band again. 

 

The rapid taper and jump.

It was working! So I thought… I started to notice a ringing in my ears, a high-pitched ringing all of the time.  I would get ‘adrenaline surges’ and mild panic attacks.  I would get tingling in my fingertips and I would get sick to my stomach.  I was feeling like all of this was manageable and I would march on.  I ran out of medicine and was out for a couple weeks and was feeling great.  I got over the worst transitional season at the music school and I was looking forward to the future and being off of the medicine.  Then I was given a choice to be demoted or fired.  I was informed that I was not able to ‘handle the job’, even though the school continued to be one of the most profitable in the nation.  Regardless, in objective hindsight, part of this could have been the new megalomaniac owner and the remaining powerless owners, and part of it could have been that I was not doing the work at a level that I was expected to.  I mean, I was way sicker than I realized.  The truth is, probably somewhere in between.  Anyways, I was like, “whatever, I’m over it.”  The demotion would net me less than I was willing to accept so I just accepted that I was being fired and decided to move on.  I felt like I was doing well with it.  But with it being a school, I had over a hundred kids and parents that wanted to talk to me and ask what was going on, etc. etc.  I was now about 3 weeks out of medicine, I learned later that you are to avoid stress as much as possible during your withdrawal from Benzos…

 

 

Acute withdrawal

I was not prepared for what came next.  I was relaxing one evening a few days after all of that drama, when my heart started beating faster.  My hands became clammy and I could not catch my breath.  I decided I was maybe having a little anxiety attack probably brought on by some of the recent events.  But it got more intense, my left arm and leg began to rock back and forth on their own.  I was starting to get freaked out, I hopped in a hot shower to try to calm down, but it was just getting worse, second by second.  At this point my chest was starting to hurt like I was being stabbed with a hot skewer.  My mouth was dry and I couldn’t formulate sentences, I got into bed and turned out the lights.  My heart rate continued to climb and I felt a tingling in my face and body.  I was certain that I was having a heart attack and asked my girlfriend to call 911.  The medics arrived and rolled me over, my lip was quivering and I was praying I would not die.  They attached EKGs to my chest, arms and legs.  They warmed up the electro pads as they printed out the results.  They said the EKG looks good but I need oxygen.  They gave me oxygen and asked me to sit up.  They told me I was 100% not having a heart attack.  And I was most likely having an anxiety attack.  I asked them, “but what about my arm & leg convulsing?”  They said, “yeah man, it’s a pretty bad one, you might want to go to the ER just to ease your mind.”  I went that night to the ER and I went again the next day, more chest pains and convulsions and shaking, so I went a few days later and a few days after that.  They did EKGs, X-Rays, MRIs, and MRIs with contrast and continually just told me to go home and try to relax.  One doctor, suggested I take an Ativan, (similar to Xanax or Klonopin), just to see how I feel. I took the small white tablet and laid on the ER bed for 15 minutes shaking and shaking.  And then the shaking stopped.  I sat up and took a deep breath.  I got up and walked out.  On the drive home I was 100% normal and calm.  I knew that it was going to be the biggest challenge I ever had trying to come off of this medicine.

 

Now what?

In acute withdrawal I was basically having mostly physical symptoms with some anxiety attacks sprinkled in for good measure.  I was having mini seizures, tingling sensations, burning sensations, shortness of breath, increased heart rate, most of the day, most of the time.  I had to remedy this somehow as I had to get back to work as soon as possible.  I couldn’t function like this.  I decided I would get back on the medicine and research everything I could about getting off of this medicine and not attempt to get off until I had devoured every piece of information I could about how to best do it and then go from there.  I was determined to not be on this poison ‘indefinitely’.

 

Round 3

 

 

Dr Ashton & Benzo Buddies

 

Through my research I discovered the Ashton Manual.  The Ashton Manual was written by a doctor in the UK who was treating thousands of people coming off of Benzos and outlined their experience with withdrawal.

 

If you are considering coming off Benzos, I strongly urge you to start with the Ashton Manual.

 

Dr Ashton suggests switching over to Valium, as it has a much longer half-life and can be administered in doses much smaller than Klonopin or Xanax.  Though this is sometimes not tolerated well with Klonopin in particular.  You see Klonopin & Xanax are 20x stronger than Valium, i.e. .5 mg of Klonopin is equal to 20mg of Valium.  You can also get Valium in liquid form making it easier to taper smaller doses.  The previous attempts at getting off the k, even though I was taking the tiniest pieces, I was still jumping cold turkey from 5-10mg of Valium equivalent.  In order to successfully taper I was going to have to get liquid Valium or do some other sort of liquid titration directly with the Klonopin.  We’ll go more into that later.  But at least at this point I knew what I needed to do, and I knew it was going to take a long time.  It is suggested to taper at a rate of 10% cuts every 10-14 days, with slowing down, as things get rough.  It took me almost a year (including stabilization) to successfully taper.

 

I went to another doctor and proceeded to explain my situation.  I asked for Valium, the doctor declined and suggested an SSRI; I said thanks, but no thanks.  I told him that I just needed to reinstate long enough to get my sickness under control and then I wanted to immediately begin to taper off.  He was unfortunately unknowledgeable of the side effects with coming off of Benzos.  He at one point even suggested that I take a dose every other day.  That is terrible idea due to interdose withdrawals, leaving the body with inconsistent blood/Benzo levels.  Thankfully the doctor was at least somewhat helpful and sympathetic and agreed to give me as much K as I needed to reinstate and taper.

 

I also found a website & forum, Benzobuddies.org.  This has been the biggest help to me in all of this.

 

I began reinstatement in July of 2012.  Within a few weeks I was stabilized and functioning well.  I started by taking a consistent dose at the same exact time, everyday for 1 month and then began to taper.  Making small cuts along the way.  Below is a list of my cuts sorted by dates.  I will go into more detail about milk titration and the withdrawal symptoms that went along with them as we go along.

 

7/12 - reinstated & stabilized.

9/12 - began slow dry cut taper.

2/13 - switched to milk titration.

*amount divided by 3x daily

.180 - 3/08/13

.125 - 3/12/13  - big jump

(switched from 3x daily to 2x daily)

.093 - 3/18/13

.083 - 3/23/13 - held

.075 - 4/16/13 - held

.072 - 4/22/13 

.060 - 5/11/13

.055 - 5/16/13

.050 - 5/21/13

.044 - 5/24/13

.037 - 6/01/13

.035 - 6/03/13

.030 - 6/11/13

.020 - 6/13/13

.015 - 6/17/13

.010 - 6/21/13

.005 - 6/25/13

6/29/13 - Benzo Free.

 

September through January was pretty normal for me.  As normal in regards to what I had gone through before when dry cutting the medicine.  I was working and functioning at an overall pretty decent level.  At this point I could not cut my pills any smaller while maintaining consistency.  So since I could not cut the pills any smaller, and since my doctor was unwilling to prescribe liquid Valium, I had to find another way.  I learned about titration.  I started with a water titration and eventually switched to a milk titration.  The way it works is like this:  You take your pill and crush in a mortar into powder.  You then mix it with a specific amount of milk.  Next you extract the amount for your dose and dispose of the rest. (This is how it is most commonly done).  For me I did it a little bit different.  I would make my mixture and then extract my dose keeping the leftover liquid for a few days.  The milk mixture would usually last for about 3-4 days and then I would have to make a new dose.  I would take my dose morning, noon and night.  And after a couple of weeks I would take a slightly smaller dose. Rinse and repeat.  If you are trying to taper, you can find lots of information on the internet and on Benzobuddies, or through the forums.  Feel free to shoot me a message and I would be more than willing to go into more detail about this process with you.

 

Symptoms and side effects of Benzo withdrawal (while tapering)

At first I thought everything was going pretty smooth.  I thought I was going to get off easy.  Then one day it hit.  It was like I could feel the medicine unlatching from my GABA receptors.  Pandora’s box opened up.  That February began the hardest time of my life.  I quit drinking all alcohol, and will continue to do so for the minimum of a year.  As I stated earlier, alcohol acts on the same receptors as Benzos and will interfere in the healing process.  I became sensitive to all processed foods, sugars, fried foods and caffeine, so I cut all of those out as well.  I became a vigilante when it came to possible interferences with healing.  Cutting out all vitamins, supplements, and OTC medications, with the exception of aspirin, though I cut out aspirin as well at the end of my taper.  I refused to take or ingest anything that could possibly be a hindrance to healing or that might agitate my hyper sensitive nervous system.  I had zero energy and it was a challenge to do anything besides sleep and sit on the couch. I napped and slept whenever I could.  I miraculously continued to go to work everyday, though I still really don’t know how. 

 

Here are some of the things that happened during the next months, at random.

Some are interconnected, and some are repeated due to variations.  Some things were consistent every day; some would only come on for brief seconds.  Things intensified and peaked and then gradually subsided over the course of the next 6 months.

 

I know there are more specific medical terms for most of these, but I am just going to explain them generically.  Many readers may be unfamiliar with some of the medical terms or abbreviations otherwise.

 

• General anxiety, anxiety & panic attacks. 

• Hyperventilation and shortness of breath, breathing into paper bags helps with hyperventilation.

• Hypochondria with a constant feeling of heart attacks or heart issues.

• Mood swings, going from happy to depressed in seconds.

• Disconnected emotionally.

• Became quiet and introverted.

• Refused to go outside, except back and forth to work.

• Broke off all communication with all friends and family, everyone. 

• Developed red and white splotchy spots all over my skin. 

• Heart ‘flutters’ and palpitations.

• Buzzing or humming feeling in my chest and torso.

• Hair turned to straw and began to fall out. 

• Wasted away, with complete muscle atrophy, losing 30lbs.

• High pitched ringing in the ear.

• Tiny red blood dots on my legs. 

• No strength. 

• Lethargy.

• Brain zaps, it felt like a large wave of electricity was washing through my skull, most often when trying to sleep at the very second of falling asleep.

• Became afraid, paranoid and depressed. 

• Audio and visual hallucinations.  Not like a psychedelic trip more of just hearing and seeing random things.

• A constant feeling of physical, emotional and mental discomfort. 

• Constant feeling of doom and obsessing over possible worst-case scenarios.

• Heaviness in my chest and other times a sharp pain in my chest.

• Tingling sensations, pins and needles in my arms and legs. 

• Sometimes I would feel like there was water on my arms or legs. 

• I lost all creative desire or inspiration. 

• No motivation.

• Felt like I had a string of hair on my face or arms, or a bug crawling on me.

• Could not formulate thoughts.

• Often in a constant state of metal fog.

• I had a period with random suicidal thoughts and suicidal fixations. 

*I was not suicidal, and knew that I wasn’t, but I just had these crazy uncontrollable thoughts.  They only lasted a few weeks and even while having them I was able to rationalize that this was the chemical reaction in my head, and I promised to get help if they persisted. 

***If you are having suicidal thoughts and feel unsafe and/or considering self harm please get help.***

• I would be freezing cold and burning hot. 

• Insomnia set in and rest was rare.  Several months of hardly any sleep.

• Felt out of my body or in a dream. 

• Vertigo, dizziness or a feeling of just being at an angle (really weird). 

• Rage and anger, a general ‘meanness’.

• Muscle spasms and tightness in the shoulders, neck and back.

• Headaches

• Blurry vision.

• Tremors and trembling of the hands.

• I would hear things as echoes and sometimes things would get loud and unpronounced and other times almost silent. 

• At the lowest I 100% believed I was going to die.

 

I felt like I just couldn’t do it, it was too much, and I could not get back on the medicine and start the process over.  I just put my head down, and just put one foot in front of the other, I just kept going.

 

Just keep going.

__

 

End of the taper & jump.

Around May or June of this year, I started to get some relief; I was at the very end of my taper and would be jumping any time.  My symptoms started to subside slowly.  Not all at once, some days with few symptoms, other days with many.  I would have windows and waves.  Windows of feeling good, almost completely normal for like 5 minutes.  Then I would fall back down to base line, with the baseline being my, ‘most often state’ where I was ‘sick’ most of the time.  And other times I would have waves, where I felt like I was going backwards 2 months.  This would last usually for a few days, with the fog slowly lifting.  This back and forth process continued for about a month, with the windows, becoming more frequent and for longer durations, and with my baseline slowly rising.  Around this time I was at the end of my taper and jumped off.  Everything kind of stayed the same for about 2 weeks, and then I felt like I drifted backwards about a month, but things got better at a faster rate as that month went on.  For the next 6 weeks, I felt like I was at about 30-40% healed.  While I was still mostly sick, I felt massive amounts of relief and I wasn’t handcuffed to taking doses of medicine.  After that I moved to about a 50/50 baseline, with very little negative waves.  My mental clarity returned for days, sometimes weeks at time, with a drift back to a foggy baseline, but the baseline not being all that bad. 

 

Where we are now.

Currently I would consider my self at about 70-80% healed, with giant 90-100% windows.  My baseline is consistent at around 75% healed progress and slowly rising.  Sometimes my windows will last for a few days, though they will normally fade in the evenings if I have over exerted my self earlier in the day.  My waves really only consist of minor fatigue, clumsiness and cloudiness.  My sleep has not only returned, but I am getting more rest.  During the tapering process (between months February – May) I was getting very little to no sleep.  After my jump, I was still dependant on a no less than 8 hour sleep window, or I else I would be in wave.  But as of now, I can get between 6-8 hours of sleep and feel fine.  My overall energy is high and I can now tolerate caffeine.  I am still boney, soft & muscle-less and I look forward to getting back into the gym to try to put on a few pounds of muscle.  I am slowly getting back into poker and music.  Though inspiration, creativity and humor seem to be the last things to return.  There are times when I feel the best I have ever felt in my life.  At about 3 months out I experienced a pretty hardcore wave.  It started with a panic attack and a week of feeling pretty ill, while it was bad; it was not as bad as it was during the worst of the taper.  The next two weeks were better but extremely fatigued and fog brained.  These symptoms slowly started to lift until I returned to baseline.  I am expecting this process to continue over the next few months with better windows and weaker waves and an increasing baseline. 

*Now at about 4.5 months post jump, I am feeling rarely any sickness, though still not 100% myself.  Still get a little foggy, but I have been working some overtime, went to a couple concerts, been back in the gym and my body is taking to it.  Haven’t had any anxiety attacks or symptoms in a couple months.

 

A few random thoughts.

You do heal while you taper.  You have to go slow, and you have to find the balance, of withdrawing enough to make yourself sick, but still able to function on a day-to-day basis.  What I mean by that is, at some point during your taper, you are going to be deficient of Benzo & GABA at the same time.  This is the signal to your brain that you are broke and need repair.  If you taper too fast, you will get too sick.  If you taper too slowly, your brain will delay healing.  No one can prescribe this balance to you.  You have to listen to your body.  At some point you will probably be very sick, hold as long as you need to, but if you are not improving after a couple of weeks at the most, taper on.  The human body is absolutely amazing and will heal.  To me it felt like it needed all of it’s resources: fat, muscle, food, etc to heal.  And it takes time, months to years.  But it does and will heal.

 

Diet

As I stated earlier I went to a pretty crazy strict diet.  My diet consisted of gallons of water, Muscle Milk (protein shakes), granola, greek yogurt and blueberries, strawberries, blackberries, grilled chicken, salad, avocado, broccoli, green beans, asparagus, bananas, (I didn’t tolerate bananas during my worst phase), Cliff Bars (protein bars), almonds, cashews, spinach, zucchini, squash, and cheese quesadillas.  I tried to drink as much water as I could, and made note to try to eat avocados & blueberries every day.  I drank lots and lots of Gatorade.  Gatorade was huge for me, I craved it, I don’t know the science behind it, maybe my body was craving electrolytes, but it helped a ton.  A lot of people have had success with Magnesium Citrate, it seems to help with muscle cramping/tension, as well as, ‘smoothes out your heart flutters’ again I do not know how this works but it did for me.  Some swear you need the powder form, but I just had Vitamin Shoppe brand caps and they worked great.  I also took Melatonin and L-Theanine at bedtime.  When I was in the thick of things I took aspirin daily.  I would break a pill into 4ths, and normally take 1/4th in the morning and 1/4th at night.  The other 2 pieces I would take if I was having chest pains or heart flutters.  My mentality was this, “I am not having a heart attack, though it feels that way, this is only withdrawal, but I will take a piece of this aspirin just to ease my mind.”  As I was at the end of my taper I found myself forgetting to take it, and eventually I just wasn’t taking it anymore.

 

 

 

 

__

 

Benzos in America.

I am not going to go into a rant on Big Pharma, and I am not going to become an anti-medicine advocate.  But I will share my opinion for what it’s worth.  Modern medicine sometimes makes amazing discoveries that heal and save lives. I am a little skeptical at some of the testing process.  Not every chemical that is created in the name of medicine is fit for human ingestion.  And we should be more careful buying a product that is sold for profit.  Just because a medicine may have what could be considered a positive property, the devastating side effects, can make it not worth it.  It’s my opinion that no one should be prescribed Benzos, or SSRI’s unless they are in a state of complete psychosis, depression with intent of self-harm, or for life threatening seizures.  It is also my opinion that even under those circumstances, they should be given to individuals for no more than 2 weeks, allowing a patient to bridge the gap between that state and healing with a more healthy course of treatment to be incorporated.  The baseline focus should be on health, diet, exercise, stress management and cognitive treatment and rehabilitation, first, and then medicine.  Often people are just medicated, and perpetually medicated, taking a drug prescribed to treat symptoms with emotional or physiological roots or the side effects of a previous drug, so on and so forth.  This is backwards. Some relatively new medicines are seen as low risk by doctors and passed out as frequently as antibiotics, (even antibiotics carry crazy risks) with most doctors or patients not being fully educated about or accepting of the risk of rapid chemical dependence or possible withdrawal processes or other delayed unknown side effects.  If I knew then what I know now, I would have willingly made an educated decision to pass.  If you are currently taking any of these meds I would urge you educate yourself on the potential risks.  And I would also suggest you to look into withdrawing from them.  As a result of the massive prescription of these medicines and long term use, many people are left believing that they have conditions such as panic attacks, or acute anxiety, or general anxiety, etc.  Often times these were not actual conditions, until the brains’ neurochemistry was compromised with foreign chemical reactions.  Reality is, everyone has anxiety, it is normal, especially in this age of information where our senses our bombarded with constant stimuli, of electronics, social media, news, and noise, and crap 24/7.  When an otherwise healthy nervous system experiences an anxiety attack it is because the body and brain are trying to tell us that we are in danger and we need to slow down and learn new coping mechanisms.  It is not always a disease we should medicate, maybe in a rare percentage of the population, but I would speculate most of us being prescribed these medications would not need them had they not been introduced in the first place.

 

Feel free to contact me directly if you have any questions about any of this.  I will do my best to provide you with any information I have in more detail.

 

 

Links:

 

Ashton Manual http://www.Benzo.org.uk/manual/

BenzoBuddies http://www.Benzobuddies.org/

BenzoBuddies Forum http://www.Benzobuddies.org/forum/

BeyondMeds www.beyondmeds.com/Benzos/ 

BenzosAndBack: http://www.Benzosandback.org/

Benzos Wiki http://en.wikipedia.org/wiki/Benzodiazepine

Benzo Withdrawal Wiki http://en.wikipedia.org/wiki/Benzodiazepine_withdrawal_syndrome

 

Cliffs:

 

• 7 years ago was given Klonopin to aid quitting smoking and to help sleep

• Klonopin was awesome at first, helped with sleep & anxiety

• Got a divorce, doctor suggested taking more Klonopin to help with stress

• Lived recklessly (feeling sedated to any aspect of risk)

• Started to realize I was chemically dependant

• Tapered a little and jumped cold turkey

• Went into extreme protracted withdrawal lasting almost a year

• Reinstated on Klonopin

• Was doing well at first but soon became tolerant and went into tolerance withdrawal

• Decided to try to taper again on my own, after jumping went into severe acute withdrawal

• Reluctantly reinstated

• Found the Ashton Manual & Benzo Buddies

• 1 year of a long, slow taper using milk titration

• 4-6 months of absolute sickness on the way down

• Healing occurred during the taper

• Almost exactly 7 years later, Benzo free and almost 100% healed.

 

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What a great and honest story of your journey to get well.  Please keep us posted.  I am nearly 22 months off Ambien and while slowly improving have found myself in a pretty intense wave and feeling a bit bummed out about not being healing by now.  Your story was very inspirational.  I wish you continued healing.  Thanks for sharing your story.

 

TG

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Thank you for taking the time to tell your story in such detail. 

I agree with you whole heartedly!  We are being prescribed these medications and most of us really didn't/don't need them. 

I was first prescribed a benzo in 1997 after my first panic attack which was brought about 7years after my husband died suddenly in a work related accident.

Fast-forward to present...I have now been on benzo's for 13yrs.  I am convinced the med's stopped working for me 2-21/2 yrs ago.  I started having muscle weakness/burning/twitching.  I went to my doc multiple times where he proceeded to tell me the Xanax would not cause this.  I never believed it.

This started my research, and I am so thankful I found BenzoBuddies.

I am sick everyday...as you stated you felt like you were going to die, well, that is exactly how I feel...most days.  I am feeling all the symptoms that you listed.

I am terrified of seizure/psychosis.

I have been trying to stabilize in order to begin my taper.

I am choosing to go a very SLOW route as I am UBBER sensitive to most medication.  I take nothing else besides my 1 1/2 to 2mg of Xanax per day.

If only I knew than what I know now my life would not be in such shambles.

Thank you for sharing your story, and I am so happy for you that your were finally able to get off the Klonopin and heal and regain your life.

Best of luck to you now and in the future.

Blessings,

FluterByee   

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Dear Analog1,

 

Thank you so much for posting such a great success story.

I must be doing better, I was able to read and understand most of what you wrote.

 

I am so happy for you and your healing.

 

I am starting to have windows/waves…so I am hopeful that I am not far behind you.

 

Thank you for sharing your story.

 

Best of health to you from here on out.

 

Causing

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Hi Analog1,

Excellent story, a really good read.

Thanks for it!

Hope things continue to improve for you.

 

And, Yes, I could have gone down a similar path last year, well meaning doctors starting a fire they just don't understand!

It's so important to google up any drug we are offered, and although the results are often diabolical looking, we can at least know what might be in store.

 

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FluterByee,

 

I am sorry to hear of your struggle.  I will offer my advice, (precursor I am not a medical professional, so please only accept this as my opinion and not that of a medical professional).

 

It seems to me, based on your current state and extremely long time taking benzos, you are most likely in full blown tolerance withdrawal, and you may not be able to stabilize.

 

It may be your best bet, once you begin your titration, start as soon as you can and just truck on, cutting every 10 days or so.  It will be extremely unpleasant, but I am thinking it is going to be extremely unpleasant for you no matter how slow you go.  Because A. you are in tolerance withdrawal, and will most likely be in a state of withdrawal until you begin to heal. and B. sort of like A. you just need to get on the other side as quick as you can bear it.

 

When I went through my first real withdrawal, I wish I would have known I was in withdrawal and just kept on without reinstating.  I was in complete panic/paranoia hell, but I didn't know it was withdrawal.  I thought I was just nuts.  But if I knew, I wouldn't have to had to endure this process 2 more times after that. 

 

I am rooting for you.

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Crazy thing is they prescribed K for helping to quit smoking! 

 

Happy you are healed.  Much happiness to you.

 

4Lov

 

Yup, super nuts, I think they have a laundry list of possible off label 'symptoms & treatments'. 

 

Thanks a bunch!

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causingpain,

 

Thanks for taking the time to read.  The main reason I decided to write my story, was because when I was sickest, all I could do is read story after story, relating to symptoms and hoping for encouraging stories of healing.

 

For me once the windows and waves started, healing progressed pretty quickly, but I still had some bad waves and some great windows, and slowly I would overall just be a little 'better'.

 

I still have a little bit of fog, lack a little bit of my creative side and the muscle tightness is insane.  But I am so much better than I was.

 

It seems you are a little over a year out, it seems what I have read is most cold turkey withdrawals start to turn the corner between 1 & 2 years with most around a year and half. 

 

So you are most likely super close! Hang in there, there's is nothing you have to do except just keep on keepin on.

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Hi Analog1,

Excellent story, a really good read.

Thanks for it!

Hope things continue to improve for you.

 

And, Yes, I could have gone down a similar path last year, well meaning doctors starting a fire they just don't understand!

It's so important to google up any drug we are offered, and although the results are often diabolical looking, we can at least know what might be in store.

 

Thanks for taking the time to read!

 

And yes it is mind blowing the risk of some chemical and how easily they are given to trusting patients.

 

Congrats to you on your healing!

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turtlegirl

 

I wrote you a reply but it must not have posted... anywho...

 

Ambien is super nasty, and it stinks that we can't taper from it.  However you are a long time removed from it and you should be healing in time.  Just give your body the rest & nutrition that it needs and try not be discouraged.  Your body heals in it's time, not what we think it should.

 

 

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Thank you so much for taking the time to write such a detailed, illuminating success story. Well done!

 

It fills me with hope. It really does.

 

And congratulations on getting to the other side!

 

:)

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This was exquisitely written.  You should publish it!  You already have the chapters titled.  My favorite is "Yo Gaba Gaba!"

 

Thanks for the kind words, I definitely put some time and thought into it.

 

Maybe I should publish it, or put it up somewhere that people can read it or download it or something.

 

 

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Thank you so much for taking the time to write such a detailed, illuminating success story. Well done!

 

It fills me with hope. It really does.

 

And congratulations on getting to the other side!

 

:)

 

Thank you and I am glad it encouraged you. 

 

And congrats to you! You are almost there!

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This was exquisitely written.  You should publish it!  You already have the chapters titled.  My favorite is "Yo Gaba Gaba!"

 

Thanks for the kind words, I definitely put some time and thought into it.

 

Maybe I should publish it, or put it up somewhere that people can read it or download it or something.

 

I agree. Publish it. The more well-written stuff out there, the better for everyone.

 

 

Thank you so much for taking the time to write such a detailed, illuminating success story. Well done!

 

It fills me with hope. It really does.

 

And congratulations on getting to the other side!

 

:)

 

Thank you and I am glad it encouraged you. 

 

And congrats to you! You are almost there!

 

You know, I am almost there! I really am, lol. Two milligrams as of today and I'm ridiculously happy about that!  ;D

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Analog, great story complete with cliffs.  Everyone should write like you.  I am wondering if your feeling of disconnection went away?  I mean, all the people you cut off...did you get back with them?  Thanks, Kathy.
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Analog, great story complete with cliffs.  Everyone should write like you.  I am wondering if your feeling of disconnection went away?  I mean, all the people you cut off...did you get back with them?  Thanks, Kathy.

 

This is a great question. 

 

I am taking steps everyday, to call or text someone, visit them, etc.  Even being involved in this forum is a result of healing and wanting to interact and give back here.

 

So far the process has been great, but slow.  But I'm OK with it, I just know it's not going to happen overnight, and I have to just keep reaching out to people and making myself available.

 

Half the battle is just showing up.

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Analog , Read your post twice…..Everything is right on the mark!!! You have written a journey that will hit for many for years to come….I have seen myself in your story. Your story is packed full of information…continued healing my friend, Thank you for writing your journey, Blessings,  Jude :smitten:
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Analog , Read your post twice…..Everything is right on the mark!!! You have written a journey that will hit for many for years to come….I have seen myself in your story. Your story is packed full of information…continued healing my friend, Thank you for writing your journey, Blessings,  Jude :smitten:

 

Thanks!  I am glad you could relate. 

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  • 8 months later...

Hey everybody, just wanted to do a quick check in here.  I originally wanted this to be a 1 year success story, and it sort of is, but alas we have hit some hurdles. 

I am doing pretty good overall.

 

Around month 9 or 10 free, I really started to feel some recovery.  I would say in the 85% realm.  I felt pretty healthy.  Was working out, working long hours, getting less sleep and I'm saying all of these as good things, because they were impossible before.  I was starting to get out a little bit more and more.  The only thing that was missing was my creativity & general inspiration.   

 

Then about a couple months ago, (about 11 months free) I discovered that my gf of almost 7 years had cheated on me.  I was actually going to ask her to marry me last December (but it didn't feel right, so I didn't).  The crazy thing about this, even as hard as this was, I was also feeling the best I had in about 2 or 3 years.  So I grabbed my stuff, moved out, and went on about my life.  Tough to think she stood by me through all of that, only to bail at the end.  My goal was to get to 1 year post benzos & really hope to be healed enough to really try to build up the relationship.

 

It was super hard emotionally and still is, but I was hit with this revelation, I just can't wait any longer to be healthy.

 

Regardless of any justifiable excuse of being sick or not, I was a crappy boring unromantic boyfriend.  It was time for me to get up and get myself back together whether I felt like it or not.

 

This was amazingly powerful.  I felt like a flood gate of good health and mojo were pouring into me at the same time that I was at a pretty low spot.  I started playing in a band again, and have picked up guitar lessons to get better, jiu jitsu lessons, and stepped up my game in the gym.  I have been hanging out with friends, and just living a semi normal pre-benzo life. 

 

I obv don't feel good or normal all of the time, but that's irrelevant.  I have to move forward, live life and the healing will come in it's time.  But I can't wait around for it.

 

I have had one huge set-back when I tried to jump back into drinking.  The weekend of my 1 year benzo free anniversary I had a couple drinks and handled it well with no set backs or anything.  The next weekend I decided I would try having a few more, the next day I was in a pretty bad wave.  Long wave.  It's been about 6 weeks of windows & waves, with palpitations, anxiety, cloudiness, yada yada.  I still don't feel as bad as before though.  It is frustrating to be pushed back what feels like 6 months or so, but I am still better than I was before and I can feel the overall wave lifting slowly.  It felt like I over saturated the sick gaba's and they are trying hard to 'recalibrate'.

 

Anyhow, lesson learned for me. 

 

I hope to check back in soon, (maybe a few months, maybe more.. maybe less..) and give a 100% healed report.

 

In spite of all of the crazy negative life stuff, I am still healing, and have healed a ton.

If you're feeling sick, and discouraged, just keep going.  It gets better, just keep going.

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  • 2 weeks later...

Analog....This is an incredible story...this should be a book. It is concise, organized, cogent, and full of survival information. I am in month 10 and yesterday I was fantasizing about reinstating. After reading your story I wouldn't think about it for 2 seconds. ...I am so glad I read your story. I read every single word and felt as though it described my p/w experience and s/x perfectly. I am having more prsoblems in month 10 than you describe,  but the decent baseline ( 70-75% if not in a wave) is holding up. I am experiencing acute s/x again in month 10..intense and scary, but your story gave me perspective and helped restore my balance and acceptance of the process. .

......I am going to reference your post to the buddies in the 6-12 month support group. Some of us are feeling disillusioned as wicked waves are still showing up in months 8,9,10, and 11...a few are still having some bad times at year one. Your story is hugely encouraging,  it will help many of us.

.......thank you do much Analog....coop

 

........I have a question for you if you check in on your story....I am having problems with dizziness, spiking b/p and anxiety/ panics...at month 10 after weeks of not experiencing them at this intensity. I know it is w/d, though it took me by surprise. As you mention,  I am convinced when in a bad wave that I am on the brink of a heart attack or stroke. You do not mention b/p problems or dizziness...did you escape these tortures? ....Do you think bad waves and the return of acute s/x late in the first year is par for this trek out of hell?

.....thank you Analog....such a great story....coop

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Hey Cooperten,

 

Thanks for all of the kind words. 

 

As far as me escaping all of the b/p, heart attack symptoms, etc.  I absolutely had them, and in my current wave still am. 

 

I don't know if there is any symptom that we couldn't consider 'normal' from the time we start taking the medicine to maybe several years post jump.

 

My theory is, when in doubt, get checked out.  It never hurts to have a Dr tell us nothing is wrong.

 

But to answer your question more directly, I 100% believe the things we are experiencing are par the course.  I think for me personally I just had so much healing and improvement in the past 6 months or so, that I thought I was out of the woods and in reality I wasn't.

 

However after reading 100s of these success stories, it seems about 75% or more seem to experience the most healing at around 18 months to 2+ years. 

 

So you & I both just need to be encouraged that we have come so far and just keep on going.  We know healing is coming.

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Hi Analog...yes,  I agree...many of the posts I read from those who are a year and more out describe good progress at one year but complete healing more in the second year. I am at a good baseline of 70-75% and edging towards 80% but this last wave with dizziness I am below baseline. I have reframed my expectation for healing.  I hope that between month 12-14-18 I see most s/x lift reliably enough to be functional and 're- entry ' in the second 6 months of year 2...

....thanks so much Analog...btw...did you have a wave of dizziness and if so,  how long did it hang on?.. n

....wishing you complete healing in the next few months...coop

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