Hope for those still fighting

[[km...]]

Cupcake I saw your post about intrusive thoughts and had to chime in.  I started having them at 11 months off they were scary and came out of nowhere.  I don't give them much thought these days but I'm not sure if starting my a/d taper helped this or if I just chose to ignore it and it went away.  I guess I will see in the next couple weeks.  Hang in there

Hugs

Kristin

[[WT...]]

So glad you healed; it gives us hope.   

Can you describe some of the mental stuff you mentioned?  This is my main problem at the moment.

[[jj...]]

Leslie, I think your October 2010 post was the most encouraging thing I saw...you sounded like you had completely given up.....I never read such a disparaging post only to see you bounce back, just wanted to say thanks.

[[Ma...]]

Leslie,

 

I read your success story and you are the first person I found whose symptoms most closely mimic my own.  I am six months out and while I am forcing myself to do things like you did when you went back to work, the mental stuff is so incredibly agonizing and demoralizing.  When the crazy stuff keeps screaming at me, I hold on to God, talk to him and think "L123 got through this and so can I". 

 

God bless you for coming back here to share.  I wish I could be your first client in your counseling business!

 

Mary

[[2w...]]

Leslie your success story is truly inspiring. Thank you for sharing your story.

 

Your story gives me and many others hope.

 

God Bless !

[Guest [el...]]

Leslie,

As I sit here and wait for the slow, agonizing recovery to take place...it helps to read success stories such as yours and to KNOW that others SAW healing and that I will too.

 

Thanks for taking the time to come back and to post a success story. People like you keep me going...one day at a time!!

 

((HUGS))

[[br...]]

This is just an awesome story. Just bumping it for no particular reason. Stumbled upon it and was very inspired.

 

 

[[Ba...]]

I'm just starting and yes, I have all sorts of psychiatric crap going along with my long term use/withdrawal. I am SO glad to read your post, I will print it out and refer to it when feeling defeated by this 'beast'. I, too cling to God in my weakest moments. My wife is as supportive as she can be but this really is a road you have to walk alone. I am scared half to death most of the time and I am grateful to God that you warned about rapid detox downsides. I was actually looking at some of the detox facilities in Malibu and considering whether I would be better off in a facility or working through it at home. Sounds like rapid detox does a lot of unnecessary damage.

 

Was actually looking for something of what you described you hoped to open...a clinic or facility that supported long term taper and definitely there is a big need for that which includes counseling support for patients and family

 

Thanks again for your post, it made a lot of difference.

[[...]]

Hello all,

 

Just wanted to give an update here.  In a few days I will be two years off benzos and I am healing up just fine.  When I initially submitted this success story, I was 17 months out.  Unfortunately a month later, I got sick again and stayed sick up until about a month ago.  The symptoms were not as severe as they had been the first year, but I was tired of fighting them.

 

One of the most frustrating aspects of the journey was that the majority of my symptoms were mental, so after the 1 year mark, I wasn't really sure if it was benzo wd or just a very severe form of depression/apathy/nihilism/anhedonia, etc.  As I am beginning to come out of the fog of this 2 year experience, I am pretty confident it has all been withdrawal. 

 

There seems to be many layers to this whole experience.  The lack of support we get from the medical community, if not outright rudeness and denial.  The lack of support from family after awhile (compassion fatigue).  All the financial strains and trying to figure out if one is capable of working or having to work with all these bizarre symptoms.  The longer the recovery takes, the fewer people there are out there that believe you, too.  I'm so grateful my boyfriend believed me.  If you have even ONE person in your life that doesn't discount what you're going through and who can offer patient support it can make all the difference.

 

I still have trouble explaining what the symptoms feel like.  Most of my physical symptoms disappeared by one year off, but the vast majority of my recovery has been battling the most horrendous mental symptoms which really put me in the fight of my life.  I now understand that being able to feel pleasure, joy, a sense of satisfaction for a job well done and the overall anticipation of reward (however small it may be) is absolutely critical to life.  When all that is taken away and you are simply going to work each day, going to bed, waking up and doing it all on faith that one day you will feel some sense of happiness again it's almost impossible to sustain for a lengthy amount of time. 

 

But I made it and know that the worst is over.  If I had to just take a guess, I'd say I will probably have these remainder of symptoms that occasionally pop up from time to time (a day here, a day there) for another year.  I'm now having some moments of feeling joy again which is just a huge accomplishment when I was unable to manufacture that on my own before. 

 

In some ways, I'm glad I thought I'd heal after two months, then six, then 10, then 1 year, then 18 months, etc. because the sheer herculean effort was beyond my ability to endure.  I'm glad I was protected from that.  At the same time, it might have been good to know that this may indeed be a two year process so that I could have been more realistic.

 

I wish I had videotaped myself during these past two years to have proof of how bad off I was and to let people know that over time we really do get better.  Those first two months after detox I was a bumbling idiot.  I couldn't make heads nor tails out of my surroundings and couldn't even care for myself.  I was totally out of it.  I'm still amazed that my body and brain were somehow able to recover from that trauma.  It's astounding really. 

 

So I hope I was able to provide some encouragement to you all.  If there are any questions I can answer, please feel free to pm me or reply to this thread. 

 

 

[[br...]]

Thank you so much for updating us! Sorry for your additional suffering, but I'm thrilled you have support in your life and that you are doing better. Stay positive and update us again please!

[[Ho...]]

L123  -  so glad to hear from you but sorry about your backtracking in your healing for a few months.  I sent you an e-mail....stay well!!!!!

Love Hoping

[[...]]

Hi Leslie -

 

Good hearing from you again; so sorry that your symptoms returned for a few more months.  Hopefully things will continue to improve for you going forward. 

 

At any time did you have thyroid problems as a result of w/d?  Just over a month ago, my TSH tested fairly high and I am now going to see an endocrinologist about this, in addition to some serious muscle wasting that I am currently experiencing (neuro ruled out MS, ALS).  In my first 7 months of w/d, I had some muscle mass loss but was usually able to get it back by working out (now over 10 months off).  I can no longer workout, as my muscles are too weak and sore from the wasting (I've heard that muscle wasting can be due to nerve damage or thyroid problems).  I'm cautious to start taking thyroid meds, especially if my issues are due to w/d; I am also experiencing inflammation and circulatory problems as well.

 

Any insight you could offer on this would be greatly appreciated.

 

All the best to you,

 

Rico 

[[...]]

Hi Leslie -

 

Good hearing from you again; so sorry that your symptoms returned for a few more months.  Hopefully things will continue to improve for you going forward. 

 

At any time did you have thyroid problems as a result of w/d?  Just over a month ago, my TSH tested fairly high and I am now going to see an endocrinologist about this, in addition to some serious muscle wasting that I am currently experiencing (neuro ruled out MS, ALS).  In my first 7 months of w/d, I had some muscle mass loss but was usually able to get it back by working out (now over 10 months off).  I can no longer workout, as my muscles are too weak and sore from the wasting (I've heard that muscle wasting can be due to nerve damage or thyroid problems).  I'm cautious to start taking thyroid meds, especially if my issues are due to w/d; I am also experiencing inflammation and circulatory problems as well.

 

Any insight you could offer on this would be greatly appreciated.

 

All the best to you,

 

Rico

 

Hi Rico,

 

I'm not sure if I had any thyroid issues or not as I pretty much stopped seeing doctors at about 7 weeks off.  I got so discouraged with the way they dismissed my symptoms and I began to realize there wasn't really anything they could do for me.  I even tried holistic doctors and nothing really made a difference.  There was one doctor, a family friend, who did accupunture and bunch of other stuff on me weekly from month 2-5 that really helped.  He was also very compassionate and patient with me in my highly anxious states.  There was one time I was there, he put the alpha stimulator on my ears and I had a massive panic attack (this was about 2 months benzo free).  I was convinced I needed to go back to the ER again.  But he was somehow able to calm me down and have me drink Gatorade (I had gotten pretty malnourished at that point because I was too anxious to eat anything). 

 

The next doctor I saw was at 9 months off for a UTI infection/physical.  She did blood work and everything came back fine.  I'm guessing she tested for TSH but she never told me what all she screened for.  I tried to explain benzo wd but she told me it was my old anxiety returning (I never had any anxiety issues before benzos).  Then she gave me a questionnaire to see if I was bi-polar.  LOL.  I'm a therapist and I KNOW I do not have bi-polar and of course the test revealed I was not bi-polar, either.  She wanted to put me back on benzos and then add an anti-depressant.  Sigh.  That was in December 2010 and I haven't been back to a doctor since.

 

I'm due for a physical so I guess I will ask her to check my thyroid.  I'm sorry I can't give you more information about that.  I have seen some people mention muscle wasting and I think they were all males so maybe wd messes with testosterone or something.  I  know it messed with my hormones. 

[[th...]]

Good Sotry

Enjoy Life benzo free

 

  I rember "sepbystep " i didnt know he  died :'( if you could tell me how it happened? i have read many times his post but for more than 1 year i was not active .

IF YOU ANSWER ME BE THANKFULL

[[Pe...]]

Just wanted to also thank you for coming back and updating us!

[[an...]]

3 months ago when I did my WAY TOO fast Xanex taper at my doctors suggestion I lost weight and lost muscle.  I had been a swimmer and used weights.  So I know it is not only males this happenss to.  God bless us all in the journey!

[[...]]

L123, I was so glad to see you had posted an update! I got off xanax in Feb 2010 over a two week period. I have followed your posts since you joined because so much of what you experienced I did as well. I too thought I was well after being off one year, but I experienced more through the second year, but to a much, much lower degree and I too often wondered whether it was withdrawal or not, but in hindsight I now know for sure it was. You should write a book! With your background and your ability to describe withdrawal so clearly and understandably, I know it would be such a great help for those going through withdrawal. I had such a hard time trying to describe all my physical symptoms and the terrible mental symptoms that stayed with me for my two year withdrawal period. Thank you for your posts! Wishing you well, Lidi

[[re...]]

Hi Leslie

 

I am glad that you posted an update. Your story has resonated more with me than almost any other and I relate so much to what you say.  Once again you perfectly describe things I have difficulty articulating.  As Lidi says you have a wonderful ability to describe withdrawal clearly and understandably.  I too think you should consider writing a book.

 

I am 15 months off now and very encouraged by my continual healing but I'm experiencing many of the same issues as you.  My physical symptoms are almost gone now  (just that awful residual internal "buzzing") but I still struggle with mental symptoms  (although thankfully they are improving too)

 

It does seem as if people who withdraw too rapidly experience more severe symptoms of longer duration-  but some experts caution that true recovery from benzos realistically takes 2 years.

 

 

Dr. Steven M. Melemis is an addiction specialist in Canada.  He's one of the few doctors I've found who considers this an average recovery time.

 

"Post-acute withdrawal usually lasts for 2 years. This is one of the most important things you need to remember. If you're up for the challenge you can get though this. But if you think that post-acute withdrawal will only last for a few months, then you'll get caught off guard.

 

Be patient. Two years can feel like a long time if you're in a rush to get through it. You can't hurry recovery. But you can get through it one day at a time.

 

If you try to rush your recovery, or resent post-acute withdrawal, or try to bulldoze your way through, you'll become exhausted.

 

Post-acute withdrawal symptoms are a sign that your brain is recovering. They are the result of your brain chemistry gradually going back to normal. Therefore don't resent them. But remember, even after one year, you are still only half way there.

 

Go with the flow. Withdrawal symptoms are uncomfortable. But the more you resent them the worse they'll seem. You'll have lots of good days over the next two years. Enjoy them. You'll also have lots of bad days. On those days, don't try to do too much. Take care of yourself, focus on your recovery, and you'll get through this.

 

http://www.addictionsandrecovery.org/post-acute-withdrawal.htm

 

 

I think that's wonderful advice.    Perhaps it was a blessing when I was going through acute withdrawal that I didn't realize the potential duration of this healing process.  But I know it helps me now to know that there are people who suffered for 2 years (or even longer) who have recovered and are living happy, productive lives.

 

One of those people is Matt Samet.  (another person I think should write a benzo book)

 

Matt, along with Baylissa (from Recovery Road) and people like you and Pamster have become my personal benzo healing inspirations.

 

I like what Matt says in his short video:

I just wish someone had told me: " You are going to feel this way. It's normal to feel this way. It's awful,  but it will end "

 

For the first time in over a year I'm beginning to genuinely and profoundly believe this.

 

Thank you again for sharing your story.  Wishing you continued healing and ever-increasing joy.

 

love,

Becca

 

 

[[Ho...]]

Becca - what a great post - this is a journey that keeps us off guard all the time.  One day you feel well and the next you do not.  It is very discouraging.  We just have to keep going forward.  Like you, I did not know how tough this was going to be when I started on this journey or I may not have done it.  So thankful that I have 19 months under my belt and continue to go on and on and on.....my days are improving most of the time....but then once again, I backtrack.  The only thing we can do is to remember that we will heal....it may take some time, but it will happen.  thanks for that encouraging and inspiring post Becca.....and L123 hope you are doing well....could you write when you have some time and let me know how you are doing.

Love

Hoping2BFree

[[...]]

Hi Leslie

 

I am glad that you posted an update. Your story has resonated more with me than almost any other and I relate so much to what you say.  Once again you perfectly describe things I have difficulty articulating.  As Lidi says you have a wonderful ability to describe withdrawal clearly and understandably.  I too think you should consider writing a book.

 

I am 15 months off now and very encouraged by my continual healing but I'm experiencing many of the same issues as you.  My physical symptoms are almost gone now  (just that awful residual internal "buzzing") but I still struggle with mental symptoms  (although thankfully they are improving too)

 

It does seem as if people who withdraw too rapidly experience more severe symptoms of longer duration-  but some experts caution that true recovery from benzos realistically takes 2 years.

 

 

Dr. Steven M. Melemis is an addiction specialist in Canada.  He's one of the few doctors I've found who considers this an average recovery time.

 

"Post-acute withdrawal usually lasts for 2 years. This is one of the most important things you need to remember. If you're up for the challenge you can get though this. But if you think that post-acute withdrawal will only last for a few months, then you'll get caught off guard.

 

Be patient. Two years can feel like a long time if you're in a rush to get through it. You can't hurry recovery. But you can get through it one day at a time.

 

If you try to rush your recovery, or resent post-acute withdrawal, or try to bulldoze your way through, you'll become exhausted.

 

Post-acute withdrawal symptoms are a sign that your brain is recovering. They are the result of your brain chemistry gradually going back to normal. Therefore don't resent them. But remember, even after one year, you are still only half way there.

 

Go with the flow. Withdrawal symptoms are uncomfortable. But the more you resent them the worse they'll seem. You'll have lots of good days over the next two years. Enjoy them. You'll also have lots of bad days. On those days, don't try to do too much. Take care of yourself, focus on your recovery, and you'll get through this.

 

http://www.addictionsandrecovery.org/post-acute-withdrawal.htm

 

 

I think that's wonderful advice.    Perhaps it was a blessing when I was going through acute withdrawal that I didn't realize the potential duration of this healing process.  But I know it helps me now to know that there are people who suffered for 2 years (or even longer) who have recovered and are living happy, productive lives.

 

One of those people is Matt Samet.  (another person I think should write a benzo book)

 

Matt, along with Baylissa (from Recovery Road) and people like you and Pamster have become my personal benzo healing inspirations.

 

I like what Matt says in his short video:

I just wish someone had told me: " You are going to feel this way. It's normal to feel this way. It's awful,  but it will end "

 

For the first time in over a year I'm beginning to genuinely and profoundly believe this.

 

Thank you again for sharing your story.  Wishing you continued healing and ever-increasing joy.

 

love,

Becca

 

Rebecca, I WHOLEHEARTEDTLY agree with everything you say, especially the part about if you had been told up front how long this process could take. If I had been told that I would have been so deheartened! The 6-12 months scared me enough as it was! And I also so agree with the quote, I believe from Matt, that all he wanted to be told that this was normal to experience, and yes this would take a while, but that he would get through this. This is all I ever wanted to hear from a doctor, and I went to many, none of them believed me, but validation would have been such a huge help to me. Hoping you a speedy recovery, you will get through this! Lidi

[[re...]]

Hi Lidi

 

I don't want to hijack L's thread but I see you used my kamikaze taper schedule-  50% reduction every week.  And L123 also had a rapid taper.  I hope that all who are reading this thread who are at the beginning of their journeys will not be frightened but will be encouraged that everyone does heal.  But I also hope they will make the decision to taper slowly.

 

IMO this is one of the most important success stories on BB-  As you noted- because of the detailed and articulate description of withdrawal symptoms and also the honesty and compassion of the writing.

 

Thanks Hoping-  IMO if you are still experiencing symptoms at under 24 months it's not really protracted withdrawal.  There is just too much evidence that many people take that long to heal.  I don't know how old you are but Dr. Ashton has noted a correlation between slower recovery times and age.  I'm in my 50s and in great health but when I burn myself it takes way longer now to heal than it did in my 30s. So do scrapes and cuts.  Why wouldn't that apply to my central nervous system?

 

I know that there are people who heal in 6-18 months and I'm so genuinely happy for them.  But I think that people on a slower schedule get unnecessarily frightened.

 

I think we need to look at the overall trajectory of healing and believe with all our hearts that we're right on schedule.

 

Wishing all continued healing.

 

Love

B

[[...]]

B, I too am in my 50's. I think you are right on point. Lidi

[[re...]]

When did you consider yourself completely healed Lidi?

[[...]]

B, I considered myself healed when I was about 2 years off. I thought I was healed at year 1, but I had quite a few longs bouts while going thru the second year. I would have never believed that it could take so long. Like I said earlier, when I first researched this after getting off after 2 weeks, when I read that it could take 6-18 months I thought that was crazy, that could not be true, so did my husband, that can't be so.... well, I found out over the next year and even going into the second, it sure does take a while. It's not as bad when you first go into it, but when it lasts and lasts and lasts.... and then you start to wonder, is it still that??? Well, now I can say, YES it was still that. It takes time for the brain to go back to normal after being messed up by these type drugs. To this day, if I hadn't had gone through it, it would be very, very difficult for me to believe it could take that long. And even my husband tells me if we were to tell anyone what I (really we) went through, no one would ever believe it. These types of drugs are looked as mainstream, as okay, but they are messing up so many people's lives, normal, well meaning people. It just eats me up when I get to thinking about it. And the sad part of it is, is when we get taken off of them with or without choice, without any warning of what's to come and then the very doctors who prescribed them just can't for the life of them understand or acknowledge (I don't know what they really think) what we are going through and we about convince ourselves we are going  absolutely crazy and know something is terribly wrong with ourselves, and yet there is NO doctor to help us through this, at least say what we are going through is NORMAL and to be expected and help us along the way - that is what really gets me seeing red, that there are not doctors out there who can or are willing to VALIDATE. We are left on our own, and that was extremely terrifying to me. It seems to me it's that way for alot of people in this situation, albeit I have seen a small minority luck up and find understanding and/or knowledgeable doctors to help them. I better get off my soapbox now! Wishing you well, Lidi

[[an...]]

Lidi, I couldn't agree with you more!