Post Benzo Freedom Withdrawal Support Group

[[Ma...]]

 

Yeah, it was 9 to 12  where you noticed a change for the better. Any day then, any day...

 

 

ps 15% is a scam, plain and simple. Not buyin'it, no way no how. Either they're going through something and it gets diagnosed as something other (add 20%) or they just keep it to themselves (add another 15 to 20%) or they reinstate and never have the courage to go off again (10%? you think more?? ok, 12% then... oh ok, another 20)... but 15% total, uh uh, no way no how. I had a doc say to me that everyone, everyone goes through something for at least 18 months. Benzo withdrawal is her specialty. So how come she's so completely off?

[[ve...]]

 

Yeah, it was 9 to 12  where you noticed a change for the better. Any day then, any day...

 

I've gotten to a point where I don't even look at the whole day as I realize it can't actually be rated since it really comes down to more microscopic analysis or dissection of hours, minutes or even moments (I was gonna say seconds, but that might be going too far ).  

 

Any given day is really a combination or sequence of many different moments and perhaps larger time frames in which a mood is established.  I might feel pretty upbeat when I wake up for example.  An hour or so into the day, anxiety might start to perk up.  I might feel a sense of pleasure in eating breakfast, but then back down a bit when I need to do some chores or "work" or I might be excited about an upcoming challenge and look forward to accomplishing some task or goal.  Later I might start to feel some fatigue and that may last a little while, usually in the afternoons.  I can look at the overall day by the end and say "ok, this was overall a pretty good day" or even compare it to a series of previous days or days last week or last month but is it really helpful? I'm not sure.

 

Bottom line, with benzo recovery and life in general, it's very complex when one tries to start rating the recovery.  While the general trend was improving health in months 9-12 for me, there were some ups and down days and moments in various days that were all over the map.  The main thing is that the trajectory while jagged, seems to be moving in the direction of healing, if that makes any sense and I wish your recovery will also entail many positive moments as you and the rest of us reach health and wellness.

 

Best ,

 

V

 

 

[[...]]

 

That 10 to 15 percent figure refers to people that go protracted. The very definition of protracted is sort of a moving target as it talks about not having debilitating symptoms post 18 months. I don't think I have any debilitating symtpoms now at six months out, but I can tell you the eye problems bug the hell out of me.   I have read that it can take up to two years for the CNS to heal 100 percent, so what your doc said sounds like it is right on the money to me.  I guess by the defintion of protracted, as long as I don't develop any debilitating symptoms in the next few months, technically, I am not a candidate, but if my eyes still burn, sting and occasionally twitch at 18 months out, protracted technically or not, I am going to be bumming.

 

TC

[[Ma...]]

i got a "throw away the key" diagnosis years ago that we (me and my doc) now thing could have been wd so anything is up from here (I wasn't kidding about that bar ).

i think you have to watch out for too much introspective physical analysis and this can send a signal in and of itself to the amygdala that something is "wrong" and this created an anxiety (protective) reaction in the brain. I think that's what they mean by PTSD. The hardest part for me after all this is going to be living with without asking myself how I'm doing all the time. So far though, though I have a headache and a sore throat, it's been a pretty good day. Lovely day actually.

... and so they carried on carrying on....

xx

 

[[ve...]]

i got a "throw away the key" diagnosis years ago that we (me and my doc) now thing could have been wd so anything is up from here (I wasn't kidding about that bar ).

i think you have to watch out for too much introspective physical analysis and this can send a signal in and of itself to the amygdala that something is "wrong" and this created an anxiety (protective) reaction in the brain. I think that's what they mean by PTSD. The hardest part for me after all this is going to be living with without asking myself how I'm doing all the time. So far though, though I have a headache and a sore throat, it's been a pretty good day. Lovely day actually.

... and so they carried on carrying on....

xx

 

I completely agree.  The amygdala can be on over alert in benzo withdrawal and recovery.  I was just reading about the threat/protection system in a book called "The Compassionate Mind" by Gilbert.  You have a point about overthinkng recovery, Marina.  Overanalysis is paralysis as the saying goes. I tend to be quite analytical about the whole benzo thing.  Funny thing is that the old brain will usually have its way over the new cerebral brain.  In other words, you can't think your way out of this, can you?  As the point is also made in the movie "Black Swan", the quest for perfection actualy must include an aspect of letting go and surrender (hope I didn't ruin it for anyone ).  Hope your headache and sore throat feel better soon Marina.  If I understand what you're saying, perhaps the true "test" of recovery will be when none of us is on here contemplating recovery and will just be outside living our lives as best we can .  The step before that may be waking up and not thinking about rating oneself or one's recovery.  Yet telling yourself not to think about something brings on a whole new set of problems.  Ok,ok, too much thinking. I think there are some good lines in the movie "The last Samurai" about this concept of  "no mind" as Tom Cruise is trying to learn how to fight, from the Samurai warriors who would become his friends and teachers.  

 

Vertigo (and no mind, no more )

[[gi...]]

the true "test" of recovery will be when none of us is on here contemplating recovery and will just be outside living our lives as best we can .  The step before that may be waking up and not thinking about rating oneself or one's recovery.  

 

Vertigo (and no mind, no more )

 

 

There's some discussion in the medical community that it's hard to tell exactly if 100% healing is possible in 100% of us because often,  long-term-ers get to a point of pure acceptance and just get on with their lives and stop counting the days. Makes sense to me; that's pretty much where I am. I have 2 chronic symptoms lately and I don't see them leaving any time soon. I'm not saying I have PWS anymore; I have benzo damage. That's even what a doc called it the other day.

 

People with benzo damage are no different than paraplegics or stroke victims who live with their disabilities but continue to hope for and work towards complete healing. We shouldn't sit around and lament our fate or "wait for healing" any more than any of them do.

 

We have to get up, get out, do what we can, when we can.

 

I firmly believe that I will not know if I fully heal until the day I die. Because on that day, and only that day, will I be able to look back and see the actual last time I had a wave and know that there are no more ahead of me!

 

Please don't get upset at me for saying any of this.

- I've met a lot of people who announce they're 100% only to then say (but I still have insomnia) or (I only get a wave once a year now) etc.

- I'm not saying that any of you reading this have permanent damage. There's no reason to think that you won't be 100% some day. What I am saying is that for me, at this point, I am who I am.  If someday my cognitive abilities return to normal, this tinnitus goes away or I can actually see out of my right eye without looking through film, I will send up a flare! But for now, this is me. The shit damaged me; that's that.

 

I don't lament; I stopped wringing my hands a year ago.

 

I think you're right, V, about the "no mind" concept. It's along the lines of Buddhist thought: Just Be. 

 

At least that's how I'm approaching things.

 

g

 

 

 

[[ve...]]

Hey G. Thank you for your thoughtful post.  Nobody would be upset or castigate you (I hope) for posting your honest feelings about your situation. It's been a rough road for you and I understand that you feel some benzo "damage" may be or feel longer term.  It is possible, yet one can always hold some hope that things may still improve some.  I agree that to wait around for that day is not necessarily the best way to go about it.  At a certain point, I believe one needs to carry on with life even if a few symptoms might remain or ebb and flow, show up once in a while, go away, come back... The whole notion of "100%" healing sounds foreign to me.  As I've stated before, I wasn't 100% BEFORE benzos so how could I expect that after benzos, at least in the initial recovery since the benzo was covering up some issues that I've had for decades, i.e., anxiety.  When I say "initial period", I guess it can be defined differently according to who is providing the definition.  My initial thought on this was "one year".  But now that I've reached a year, it's convenient for me to move that along to "18 months" .  When I get to 18 months, if I"m not satisfied with my recovery, I have a feeling that I might wanna redefine it to "24 months" .  I think the consensus seems to be that if one is treating oneself fairly well (not binge drinking or taking a bunch of other recreational drugs for example) that one can expect quite a great deal of healing in the first year off benzos. For me, the next six months after a year represents fine tuning those few persistent symptoms.  What I'm left with at 18 months, can't say how that will feel as I'm currently at 14 months.   Many things have improved to 90% and some are better than 100%, sleep being one of them.  This is deeply satisfying since I first took a benzo 2 years ago for two primary reasons, one of which was insomnia.  It is completely gone and for the most part,  I'm sleeping extremely well now .  Anxiety and the afternoon fatigue is another matter  .  Well, that's all I've got for now.

 

As you said G-

We have to get up, get out, do what we can, when we can.

 

Onward!

 

Vertigo

[[...]]

Ginger,

 

I fully anticipate to heal 100 percent.   Will I get there, I dunno. I understand where you are coming from in your post.

 

I also agree that I have seen many people declare 100 percent healing only to state they have various symptoms remaining.  I have also seen people declare themselves 100 percent, and then come back a month later and say things are worse than ever.

 

I don't want this to seem like a total downer of a post, as I have seen many people update on various forums after being off for years, that never had a symptom again.

 

The whole thing is sort of a big unknown....I would do much better if someone told me at what point it was over...if someone told me this will be over on July 10, 2012...I know that is a long time away, but hey at least it would be a date to shoot for...that is sort of why I set mini goals....even though..those mini goal dates might not have me feeling much better than the prior goal...if I didn't do that..I may drive myself nutty..

 

TC

[[ve...]]

 I have also seen people declare themselves 100 percent, and then come back a month later and say things are worse than ever.

 

I hear you TC.  When I was a year off, I had only a few symptoms and was tempted to write a success story but I felt it was premature.  If and when I write one, I think I will need to be feeling pretty darn good for a at least a couple months.

 

I don't want this to seem like a total downer of a post, as I have seen many people update on various forums after being off for years, that never had a symptom again.

 

You don't sound like a downer.  You're being realistic which makes sense to me.  By the way, I think one can be "healed" and still have some "symptoms", meaning that there is some overlap of symptoms between benzos and things that come up in life.  If you're talking about a specific eye twitch or tingling, that might be more easy to define as a benzo symptom.  When it comes to something more vague, such as the occasional insomnia or flare up of anxiety, it can happen regardless of a benzo and perhaps more difficult to differentiate.

 

I set mini goals....even though..those mini goal dates might not have me feeling much better than the prior goal...if I didn't do that..I may drive myself nutty..

 

Let's face it TC. Maybe you are already a little nutty

 

Vertigo (no more, for now )

[[...]]

 

Sometimes you feel like a nut..sometimes ya don't....

 

 

T

C

[[Ma...]]

:laugh:

[[...]]

 

I don't know if anyone remembers the animated show Futurama, but in that show they had people's heads in jars. Of course these heads could still talk. I think they somehow kept the heads alive for a long time. Hey, it was a cartoon!

 

I think I would like to exhange heads with someone, as all my symptoms seem to be head/face/jaw related.

 

*puts his head in a jar*

 

TC

[[gi...]]

Hey G. Thank you for your thoughtful post.  Nobody would be upset or castigate you (I hope) for posting your honest feelings about your situation. It's been a rough road for you and I understand that you feel some benzo "damage" may be or feel longer term.  It is possible, yet one can always hold some hope that things may still improve some.i\I totally agree. I'm just not sitting in front of a calendar anymore. If it happens, it happens.  I agree that to wait around for that day is not necessarily the best way to go about it.  At a certain point, I believe one needs to carry on with life even if a few symptoms might remain or ebb and flow, show up once in a while, go away, come back... The whole notion of "100%" healing sounds foreign to me.  As I've stated before, I wasn't 100% BEFORE benzos so how could I expect that after benzos, at least in the initial recovery since the benzo was covering up some issues that I've had for decades, i.e., anxiety.  When I say "initial period", I guess it can be defined differently according to who is providing the definition.  My initial thought on this was "one year".  But now that I've reached a year, it's convenient for me to move that along to "18 months" .  When I get to 18 months, if I"m not satisfied with my recovery, I have a feeling that I might wanna redefine it to "24 months" . see that's exactly what I did. But I'm stopping at 2 years. I think the consensus seems to be that if one is treating oneself fairly well (not binge drinking or taking a bunch of other recreational drugs for example) that one can expect quite a great deal of healing in the first year off benzos. For me, the next six months after a year represents fine tuning those few persistent symptoms.  What I'm left with at 18 months, can't say how that will feel as I'm currently at 14 months.   Many things have improved to 90% and some are better than 100%, sleep being one of them.  This is deeply satisfying since I first took a benzo 2 years ago for two primary reasons, one of which was insomnia.  It is completely gone and for the most part,  I'm sleeping extremely well nowYou one lucky man! .  Anxiety and the afternoon fatigue is another matter  .  Well, that's all I've got for now.

 

As you said G-

We have to get up, get out, do what we can, when we can.

 

Onward!

 

Vertigo

[[ve...]]

Don't know how lucky I am G but I am fortunate that the prilosec taper seems to be going smoother than expected.  Also, the brief bout of vertigo this past week seems to be subsiding.   I think another week or two and I'll just about be medication free .

 

Vertigo (no more, for now )

[[gi...]]

Don't know how lucky I am G but I am fortunate that the prilosec taper seems to be going smoother than expected.  Also, the brief bout of vertigo this past week seems to be subsiding.   I think another week or two and I'll just about be medication free .

 

Vertigo (no more, for now )

 

I'm so glad it was a short wave!  And I'm really happy for you to be able to be completely drug free. I was hoping to be free by my birthday last month but trying to go off lamictal was a very bad idea. I don't think I'm going to try that again. Oh well; I'm down from 5 so I can't complain!

Enjoy your day =

 

g

[[as...]]

God this is so distressing to read, only being out 6 months. The cog fog is so relentless, it just WILL NOT LIFT, and the only hope I have is that it will come in time. To read people 14+ months out throw their hands up is so incredibly demoralizing. Trying to hold back tears just reading this thread, guys... :'(

[[ve...]]

Hi Ashlee.  Sorry if some of this thread has been difficult to read.  Keep in mind that those who stick around on a benzo forum beyond six months may not represent the "majority".  I'm pretty sure there are many folks at six months who are not contributing here because they feel pretty darn good and have moved on with their lives.  You can also read the Success Stories thread for more optimistic feedback.  Most on here are not 15 months out and having severe problems.  I've never taken the time to actually calculate it but I'd say the majority who regularly post on this thread are under a year, which is well within the timeframe of 6 months to 18 months that many seem to feel is the time for maximum healing off benzos.  I'm around more, having started this thread and wanting to help others and get through a few remaining kinks.  While I have a few issues left, truth is that I had anxiety and GI issues before I took a benzo, so I'm pretty close to healed and in some regards am feeling better than before with regard to many aspects of my health.  Hang in there.  It's not the same for everyone but if it's any consolation, months 7 and 8 were very good months for me, one setback in month 9 and then 10-12 were very good again.  When I started this thread, in my initial post I encouraged folks to also try to report on their positive news and progress.  Unfortunately, sometimes when one is feeling crappy, one tends to overlook the good developments and want support for the issues that are bothering them at the time.  I hope you can find some encouragement from some of the posts here. I know I have.

 

Best,

 

Vertigo

[[gi...]]

Hi Ashlee,

 

I made significant gains at month 9, and now at 2 years feel I've walked through the fire quite successfully. Please do not despair at 6 months.This is a painfully slow process but I assure you, you will get through it. Like Vertigo said, very few people stay on here once they heal. I myself have seen at least 20 people leave in my 2 years here. I stay on to help others and for the camaraderie like Vertigo.

 

The 2 remaining chronic symptoms I have may or may not go, but one I thought would always be there finally went after 2 years, so I remain hopeful.  I've "thrown up my hands", as you say, but not because I've given up. I just no longer contemplate the what ifs and whens.

 

Sadly, cog fog seems to take longer than most of the symptoms but I assure you, the fog will lift.  I never did crossword puzzles until last year, and for me, they helped wake up my brain. Maybe they would help you. I couldn't read (focus physically or intellectually) for a year and now I'm happy to say I'm back to reading every day. So just hang in there; do what you can when you can; accept, adapt and accommodate. I assure you, it will get better.

 

ginger

 

 

[[as...]]

Ginger, thank you. I just wrote this note to myself just to get it out. 

 

I just need to type this to get it all out there. I am in a rough spot right now. It really makes it hard to deal with wd as time passes, because I think intuitively I expect it to get better with time, not progressively worse. Here's what I'm dealing with:

Cog fog/DR- majorly out of it, feel like a veil is pulled over my eyes, my reactions to the outside world and intentionally and thought out not natural.

Flu fatigue and pain - feels like I have a fever and my whole body is shaky and aching

Nerve burning- my hands, my torso, my skull, my feet- all on tingly, burning fire

Vertigo- Feel like I could faint, this goes in and out

Rapid heart beat- worse everytime I eat (which makes me fear food), and stand up

Eye problems- blurred vision, double vision, teary red burning eyes

I feel very depressed and apathetic about myself. I want to go home and roll into a little ball and just cry. I'm so tired of being sick.

 

I follow everyone's stories just looking for a glimmer of hope. Especially those that have been off a long time. I'm doing everything right Ginger- diet, exercise, sleep hygeine, yoga, meditation...I want to be where you are.

[[ve...]]

Ginger, thank you. I just wrote this note to myself just to get it out. 

I just need to type this to get it all out there. I am in a rough spot right now. It really makes it hard to deal with wd as time passes, because I think intuitively I expect it to get better with time, not progressively worse. Here's what I'm dealing with:

Cog fog/DR- majorly out of it, feel like a veil is pulled over my eyes, my reactions to the outside world and intentionally and thought out not natural.

Flu fatigue and pain - feels like I have a fever and my whole body is shaky and aching

Nerve burning- my hands, my torso, my skull, my feet- all on tingly, burning fire

Vertigo- Feel like I could faint, this goes in and out

Rapid heart beat- worse everytime I eat (which makes me fear food), and stand up

Eye problems- blurred vision, double vision, teary red burning eyes

I feel very depressed and apathetic about myself. I want to go home and roll into a little ball and just cry. I'm so tired of being sick.I follow everyone's stories just looking for a glimmer of hope. Especially those that have been off a long time. I'm doing everything right Ginger- diet, exercise, sleep hygeine, yoga, meditation...I want to be where you are.

 

Hi Ashlee.  Sounds like you're struggling with a few symptoms still at 6 months.  I agree with Ginger that it's still early in your healing timeframe.  It's good to get it out and journal every day. Have you started a blog here? That can also be helpful.  One cautionary note.  Sometimes we frantically try to do and do and make things speed along faster, but benzo recovery seems to have its own timeline which is not linear.  Sometimes no matter what we "do", the benzo beast will have its way.  A setback here or there, but try not to be discouraged.  It's often a step forward and two steps back but then it could be a couple weeks of five or six steps forward.  Also, one can often try too hard to do too much. I'm not saying it's not good to be proactive in terms of eating healthy, exercise, watching the sugar intake or caffeine... but a part of ultimately coping with this journey seems to be about letting go.  Meditation and mindfulness is great and has been helpful to me in many ways.  It starts to be less helpful if one is meditating to try and get somewhere or if one is constantly in a "fix me" mode of thinking.  As was posted earlier in this thread, sometimes "not thinking" about it can be equally beneficial.

 

Best wishes,

 

Vertigo (no mind no more )

[[as...]]

Sorry for the threadjacking Vertigo. I'll create a blog. Thank you.

[[ve...]]

No apologies needed Ashlee.  Please post here whenever you like. I did not view it as "threadjacking"  This thread was set up for everyone off benzos in recovery and in search of support from others who are "post benzo" and still experiencing symptoms.  I was just inquiring whether you might find it helpful to start a blog IN ADDITION to posting here or anywhere else on forum.   Your comments are always welcome.

 

Best,

 

Vertigo

[[...]]

God this is so distressing to read, only being out 6 months. The cog fog is so relentless, it just WILL NOT LIFT, and the only hope I have is that it will come in time. To read people 14+ months out throw their hands up is so incredibly demoralizing. Trying to hold back tears just reading this thread, guys... :'(

 

Ashlee,

 

The "normal" healing time for people post benzos is 6 to 18 months. For someone to have symptoms 14 months out is common.  I can see how this thread might freak you out a bit, I just posted my six and a half month update and I have  couple symptoms left too that are highly annoying. However, I don't want puppies and rainbows anymore, I want to get the straight info, so sometimes I read stuff here and on other threads that I don't like, but I would rather read the truth than someone sugarcoating things for me and telling me "no worries."

 

I can tell you..and this is straight talk..no bs, I promise, that I have seen several people here turn the corner at the 9 month or one year point. There is no reason to think this won't be you, it could happen sooner. There was a lady here SDM who had zero windows and at the 9 month point woke up symptom free, and over a year later, they never returned. This process is just so nutty that we don't know what to expect.

 

Btw, I have the same eye issues you talk about and occasionally I get those inner viberations/inner twitches. Aside from that I really don't have a whole lot of symptoms right now, but I have no idea what to expect in the future and it sucks not knowing. I have read studies saying it takes up to two years for our CNS to heal. There are alot of factors in consideration when trying to figure out how long it will take to heal and two years seems like an eternity, I know, this is pretty rare for it to last that long. It does for some people, and there are a few of them here that post in this very blog. I have followed the progress of many of them and while they are still struggling to a certain extent at this point, they have made great strides in recovery and I have no doubt they will heal in the future.

 

You will find some real straight shooters in this blog..

 

Hang in there....being six moths off is an incredible feat... This was the toughest journey I ever had to make...and I will certainly be glad when it's over...and I never want to revisit it again...

 

I agree with V..blogging is a good idea too..I never had a blog prior to coming here and I thought why would I want to do that? It ended up being very helpful in my recovery...

 

TC

[[gi...]]

Ginger, thank you. I just wrote this note to myself just to get it out. 

 

I just need to type this to get it all out there. I am in a rough spot right now. It really makes it hard to deal with wd as time passes, because I think intuitively I expect it to get better with time, not progressively worse. Here's what I'm dealing with:

Cog fog/DR- majorly out of it, feel like a veil is pulled over my eyes, my reactions to the outside world and intentionally and thought out not natural.

Flu fatigue and pain - feels like I have a fever and my whole body is shaky and aching

Nerve burning- my hands, my torso, my skull, my feet- all on tingly, burning fire

Vertigo- Feel like I could faint, this goes in and out

Rapid heart beat- worse everytime I eat (which makes me fear food), and stand up

Eye problems- blurred vision, double vision, teary red burning eyes

I feel very depressed and apathetic about myself. I want to go home and roll into a little ball and just cry. I'm so tired of being sick.

 

I follow everyone's stories just looking for a glimmer of hope. Especially those that have been off a long time. I'm doing everything right Ginger- diet, exercise, sleep hygeine, yoga, meditation...I want to be where you are.

 

Yes you are doing everything right, Ashlee! Keep it up. You will get there. When I was at 6 months I couldn't believe how bad it was (and it was an improvement from the previous month), either. I didn't have all your symptoms but I had others you don't.  It's sucks, it's terrible, it's a crime...but it ENDS. Hang tough, OK?

PM me or stop by my blog sometime.

ginger

[[Ma...]]

Ashlee, if I understand correctly from your signature, you've come off quite a high dosage (the two drugs combined) in only two years, 6 months is nothing and your current state in no way forecasts you're going to be feeling this way for any length of time. Think of it as 6 months of healing down. I'm at 9 months of healing and you can be hopeful in the fact that I'm feeling better now than I was 4 months ago, quite a lot. It may get bad for me again, it may not, but it got worse for me at 5 months out but I'm coming out of it to something soooo much better in so many ways. Stay positive. Why not, time will pass no matter how you feel about it.

Today, on my 9 month anniversary, I can say things are looking up (knock wood... I think it's to scare away the evil eye, think I'll do it again).

m