Post Benzo Freedom Withdrawal Support Group

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Happy sunday buddies

 

Vertigo

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Chris, did I go to the correct video?  The one I had was a 9 minute story on how benzo's work.  Thanks  Sharil

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Oops...sorry Sharil...try this one....here is the one I meant to send. 

 

http://www.youtube.com/watch?v=9dSJOWcBFio

 

 

Chrisw

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Thanks Chris for posting that.  What a story.  That was a lot of ativan that Pasquale was on.  Amazing how things really started to turn for him at 16 or 17 months.  Of course everyone is different but this  may give a lot of folks out there some renewed hope.

 

Best,

 

Vertigo (at 15 months )

[[Re...]]

Hey Guys,

 

I'm posing a question more so for validation and I guess some encouragement.  The question is geared more toward those who have 18+ months of recovery, which is where I am at this juncture.  Sleep has been my worse recovery symptom.  Although my sleep has evolved into much better sleep, I'm still having this middle of the night awakening issues.  I know that some others 18+ months out are having recovery issues in other areas, and sleep is not an issue, but I sure would like to hear at what stage your sleep was at around this time of recovery.  I find myself waking up nearly every morning angry that I did not sleep 8 hours.  Currently I'm sleeping roughly 4-5 1/2 hours nightly.  I have no difficulty getting off to sleep, it's just that after after 4 hours, my body awakens as if I have had enough sleep.  When I do get out of bed and start my day, the issue of poor sleep is on my mind for just a few hours, and then my focus is off sleep, and getting on with my day.

 

I guess my main issue is that I become angry nearly every morning when I awaken feeling/knowing that I deserve more than just a mere 4-5 hours of sleep.

 

It would be grand to hear from buddies such as Pam, Patty, Beeper, Wonder Woman, ntw, Spring and others to give me a account of how your sleep was around this time; of course, others can chime in as well, the more the better. Even though vacation is a couple of months away (July-August), I don't want to spend vacation with poor sleep.  I haven't had a vacation in two years because of my sleep issues. (I was put on klono for panic attacks; not for insomnia...by the way, panic attacks are completely gone! ).

 

At the 12 month mark I was hopeful that my sleep issues would resolve themselves, and when they didn't, I felt blind sided.  At the 18 month mark I didn't even expect a resolution, but I was hopeful.  If I have to deal with this for another 6-12 months, then it is what it is, but enough is enough .

 

At any rate, I guess I am looking for encouragement and validation that this is still benzo recovery.  I am still in perimenopause, so that could be a contributing factor.  I never had any sleep issues prior to benzos; in those days I slept like a baby and I could sleep at anytime day or night and would awaken ever so refreshed, but now, sleeping up to eight hours seems like an impossibility.  Everyone sleeps so well in my house, even my yorkie.

 

I'm a tad bit discouraged, angry, and impatient, but I will forever stay the course.  Thanks guys.

 

Retire2010

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Hi Retire.  Sorry I can't comment on 18 months since I'm at 15 .  I can say that I've noticed some significant changes in my sleep since about a year off. I'm dreaming and sleeping more deeply BUT I have this annoying habit of waking up at 5AM, sometimes 5:30 when I don't have to be up til 6:45AM!  I've tried going to bed earlier but I seem to only be able to sleep about 6 or 6 1/2 hours tops.  Like you, I'd like to get 8 hours!  I sometimes get up to use the bathroom but I seem to be able to get back to sleep if its like 2AM but not if its after 4AM which usually is not the case.  Also, I have been off coffee for a while and no caffeine or chocolate in the evenings.  I'm very careful about how much sugar I eat at night and try to not eat anything after 8PM.  I also take a magnesium/calcium supplement after dinner.  I've heard magnesium can help with sleep.  Lately when I wake up at 5AM, I try to let the feelings of frustration dissipate and I try to do some body scan and light meditation.  I've read that one can get some rejuvenation from just lying in a calm state even if not sleeping.  I don't think the anger would be helpful .  As you no doubt know, what we resist, persists.  So hopefully you will find a way to accept the situation if you can't get more sleep at the moment.  I also sometimes catch 30 minutes to an hour nap on days where I've only managed 6 hours at night and seems to help. Hopefully some others who are farther out will post some input.  I seem to recall that Ginger only sleeps 3-5 hours still. I don't know about the others.

 

Best,

 

Vertigo (and insomnia no more )

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hi V, I am thinking I would really like to get in on this thread, if that is ok.  I am having some trouble, as many are i know.  the waves keep coming and getting me down and my sleep keeps getting compromised.  i just feel like i cannot truly move forward in my life.  it is really frustrating.

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hi V, I am thinking I would really like to get in on this thread, if that is ok.  I am having some trouble, as many are i know.  the waves keep coming and getting me down and my sleep keeps getting compromised.  i just feel like i cannot truly move forward in my life.  it is really frustrating.

 

Sure thing Ash.  I'm aware of some of the issues from your blog.  Perhaps if you describe some of your main concerns here so others will have a better idea and can post back to you here?  I agree that it can be very frustrating feeling a kind of inertia at a few months off.  I remember I had low motivation, oscillated between blues and anxiety in that first six months off valium.  I don't mean to diminish your feelings by saying that I think you're doing a great job of taking small steps to re-engage with people and life. I admire that you are out there taking the yoga class and also going to meet other people/artists at galleries or other social events.  I think Wien is also doing some of that now as well.  I would have avoided a group class like the plague when I was a couple months off so you're ahead of me there .   I think I read on your blog about the lack of creativity. That will come back.  I only recently started back with very deep dreams that I remember.  It is of course different for everyone.  I was thrilled when I started dreaming again.  I think it happened back around 6 months too and then there was a lull and then ever since November or so, the sleep has been much nicer.  The whole taper wiped me out and I really needed to catch up on my rest that first four months.  If you need rest, take it when you can.  I know some say that naps get in the way of night sleep.  It may or may not be the case for you. Anyway, I look forward to hearing from you more on this thread about what areas you are having issues with in your post taper life  thus far . You are still healing, that is for sure.

 

Best,

 

Vertigo

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Retire, my sleep issue is still haunting me but I go with the flow.  I still have a fear of lying down () so I usually postpone it until 11-12 every night.  I, too, usually have no trouble falling asleep but I ALWAYS wake up around 3:30 am and it takes me awhile to fall back asleep.  If I don't fall asleep within 20 minutes or so the adrenalin rushes occur and then I am up for the day.  I usually get 6 hours of deep sleep which really is not enough but I can function on that for now.  One night I slept 7 hours straight and it was heaven.  I do not nap but find that I occasionally fall asleep for 10 minutes or so in the late afternoon when watching the news.......which usually amps up some anxiety so I try to refrain from taking these catnaps.  So, all in all, sleep has improved but it is not how it used to be.

 

Patty  xo

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Hi all and vertigo

 

well... i will be one year !! man its been snails pace to get to one year! for me........feb 19th!!

 

still ongoing issues

-inner electrocuting sensation in chest, arms sometime legs, pins and needles

-inner vibes, tremors, in arms chest, sometimes kneck and shoulders! grrr

-which above 2 hugely affects my sleep, hard to fall asleep, dont stay asleep all night, i wake cuz of it, soo frusterating, vicious circle, with the healing cuz of the lack of sleep!!

-chronic fatigue

-balance issues,, think mostly cuz of lack of sleep, light headed feeln too at times... swayn feeln!

-eye twitch floaters, blurry at times...

 

anyway............ive been doing yoga bout 2-3 times a week at rec centre, yaay me! i push myself, w the fatigue... and off balance issues.. doing yoga... i was doing cardio, but that really seemed to wipe me out more.. yoga to does sometimes!! can be intense as well.... depending on the instructor, working on your core, balance and flexibility....

 

Ive been eating way better, more salads, veggies, fruits daily.... but still no improvement w energy, or my fatigue!! which i dont get , or understand, ive read books on this...im taking vitamins, supplements too!!

[[ho...]]

hope.. continued..

 

im doing what i can to improve my health!! and getn absolutely no rewards.............its very upsetting..  what makes it worse... is i keep saying in my subconcious mind "whats wrong with me?", what are the doctors missing? , my thyroid a problem? been tested sooo many times....had many many bloodtests done...?? is this is CFS, chronic fatigue syndrome for sure? i think soooooooooo.... been a year of extreme fatigue and my body is not recovery , or my energy improving.. horrible...

 

im goin to bed 5 days a week by 1030 , 11pm.. wasnt before!!! just started taking melatonin to try and give me a more solid sleep, helped few days...sleep still huge issue for me... w how long i sleep, how long takes me to fall asleep, tossing lots, and waking during the night.. def not a good combination to improve my energy, and fatigue...Just want to have more energy and say good bye to the work fatigue!!!

 

any support here, appreciated

hope. i got 4 hrs sleep, going back to bed..

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Hope,

 

Hey buddie. Sleep is still a challenge for me some nights for the same reason you are having. I generally sleep well for a couple weeks, almost like the old days, then I will hit a patch like you describe that can last a couple days or a week, sometimes longer. I have been battling this sleep issue since late April of 2010 while still tapering. It stinks for sure.

 

It sounds like you are doing all the things you need to do as far as excercise and eating healthy. You may not see the payoff now, but I think in time, you will see a major payoff. Hang in there.

 

TC

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I find myself waking up nearly every morning angry that I did not sleep 8 hours.  Currently I'm sleeping roughly 4-5 1/2 hours nightly.  I have no difficulty getting off to sleep, it's just that after after 4 hours, my body awakens as if I have had enough sleep.  When I do get out of bed and start my day, the issue of poor sleep is on my mind for just a few hours, and then my focus is off sleep, and getting on with my day.

 

Hi Retire,

 

It's been 2 years for me and for the last year I've averaged 3 hours a night.  I wake up after 20-45 minutes, then toss for 4 hours, then fall back to sleep around 5:30. Lately I've just gotten up at 5:30 because by then I'm so agonized by racing thoughts that I just can't relax.

 

So... just to let you know, from my perspective, you're doing pretty great! 

 

ginger

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Hi Ginger, Thank you again for your kind words, you alwaysseem to be there to help and answer questions for me. I hope you have a great weekend. Colleen   

 

Well thank you, Colleen!  I hope you had a good weekend.  Hubby whisked me off for the weekend 

I hope you're doing well!

 

ginger

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Hope/TC,

 

I feel you on the sleep.  JUST GIVE ME SLEEP!!! and I can handle the rest of the residual symptoms.  Well, I guess I've got to handle the sleep issues too; what choice do I/we have.

 

TIME, TIME, TIME!  We always come back to this solution.

 

My eyes felt as if I had a truck load of rocks in them on yesterday.

 

Sleepy, but staying the course.

 

Retire2010

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I too, am having sleep issues.  It was a lot better and then the past week I have started getting up in the middle of the night again at least twice to use the bathroom.  i thought that was behind me.  and i am waking up earlier again too.  this morning it was probably around 4:30 and just could not relax.  the intrusive/anxious/obsessive thoughts started coming in as well.  when that happens i end up crying because i just can't stop it.  but it sounds like this is typical to be hit by poor sleep after it has been going well for awhile (?)  i guess it is just one of those waves.  thinking i should just start getting up at 4:30 and preparing to go to yoga at 6am. 

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4:30am seems to be the magic number for me too. dang. i believe sleep is the answer but hard to get.

and i suffer badly from burning skin on my arms but the thing i hate the most is the spaced out de-realisation. Damn.

I'm considering, after talking to a pdoc, starting an ADP since before benzos i had need of them from time to time.

he was pretty good; he said by now it should be improving a little after tapering, not worsening and that i probably needed some assistance in the neurotransmitter area.

i think he may be right for my case.

he's British, specialises in meds for brain injury as well as others! he

understands a bunch of stuff that others fob off, (like clonazepam is bad

for long term, needs tapered w/d), and even assessed my

biochemical needs.

It felt like hell cause of cog fog/exhaustion but we had a good exchange of views in possibly finding

me a possible chemical boost by analysis of neurotransmitter deficiency

symptoms. He is having a resident search all online medical references and my

history to find a possible solution fitting my chemical needs. He even

listened to me when i told him i react very strongly to chemical assists at

low doses. no hammers here, more delicate I hope.

he wanted to reinstate clonazepam at 1mg as a pure short term stopgap to stabilise me, but i said no. he said OK. no pressure.

i later reconsidered, called and left a message saying that stability might be welcome, as i am feeling nasty w/d with burning and spaced out but i didn't have these symptoms before oxycodone and clonazepam.

He did NOT prescribe something at the drop of a hat at all in the standard trial and error, torture the patient style, and ran all the various names of meds by me to see what hadn't worked, then lumped them into possible groups to pick from, then they will dig thru them and my history to see what might help.

If i didn't have GERD this would be easier too. Co morbid sucks.

 

 

[[as...]]

sounds like you have a thorough and caring doc, regaudio.  lucky to find.  i have a good one too though his comments the other day got me down.  he said that my waves that i am having may be just part of who i am!  it was really annoying to hear him say that.  i don't think that he is right.  i have trouble knowing exactly who i am anymore but i really don't think that these waves are the real me wherever she is buried underneath this benzo nightmare.  i personally, don't want to take any drugs for anything I am experiencing.  they haven't worked in the past and only make things worse for me.  he wants me to consider taking Deplin around the 6 month mark but even that is scary to me.

 

right now i seem to be having lots of trouble with anxiety, especially early in the morning.  i was doing fine for awhile and then it hit me again and has really affected my sleep.  i am having trouble dealing with it.  i know there is really nothing to do except just get up and keep going but it is exhausting.

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i have a good one too though his comments the other day got me down.  he said that my waves that i am having may be just part of who i am!  it was really annoying to hear him say that.  i don't think that he is right.  i have trouble knowing exactly who i am anymore but i really don't think that these waves are the real me wherever she is buried underneath this benzo nightmare.

 

Even the "good docs" are imperfect and most do not fully understand benzo withdrawal, not even close.  I'd like to see them take zanax or klonopin for a few months and do a c/t and then see what they think a few months afterward about whether it's "just who he is".   Your doctor may be good in certain areas Ash, but he is not right about this.  You are most definitely in the early stages of withdrawal off a detox and you will very likely be healing for at least 3 more months, possibly longer.  That means you may oscillate between anxiety and depression, have sleep disturbance and other symptoms you might find on the Ashton Manual.  It will not be permanent and is not who you are!!!.

 

 

i personally, don't want to take any drugs for anything I am experiencing.  they haven't worked in the past and only make things worse for me.  he wants me to consider taking Deplin around the 6 month mark but even that is scary to me.

 

You are doing so many things to engage with activities and people, a pill is not the answer (IMO).  Yes, some folks may need a pill in extreme cases of crisis or depression, suicidal ideation, hallucinations... but I don't hear that from you.  You are of course free to take this doctor's opinion and follow it.  You can also get another opinion from a more integrative specialist or naturopath.  Ultimately, we are our own best healers.  Not saying that we need to do it alone. We can find teachers (yoga or meditation as an example) who can help us find our way or perhaps a spiritual or religious practice as well.  And doctors can be helpful with some things too.  I had a doctor who pushed lexapro after I had come down too quickly off 7mg valium down to 5mg in Fall 2008 before I started my taper or found Ashton materials and benzo forums.  It's in their nature to fix things with a pill.  It's how they were educated.  It's part of Western medicine.

 

right now i seem to be having lots of trouble with anxiety, especially early in the morning.  i was doing fine for awhile and then it hit me again and has really affected my sleep.  i am having trouble dealing with it.  i know there is really nothing to do except just get up and keep going but it is exhausting.

 

Did you have much anxiety before you took a benzo?  I don't recall why you first took the benzo Ash?  In my case, it was for anxiety and insomnia.  The insomnia is gone, the anxiety is still lingering but it's not terrible.  Sleep does get better.  I really turned the corner in months 5-7 but deep sleep became more consistent to where I wake up alert without needing coffee at around 10 months.  Again, it's just one person's story, yours may be quicker.

 

Hang in there Ashlandana.  Even the best of doctors make mistakes and get it wrong. Go with your gut and trust your own intuition with one caveat- I'm not a doctor and if you feel medication might be helpful, I and hopefully nobody here would judge that negatively.  Some folks just need a jump start of a medication for a few months and can taper off it later.  From my point of view based on what I've read on your blog, not knowing all there is to know about you, based on that limited input, it seems you have come a long way and will continue to do so in the next 6-9 months.  If at one year, you are not significantly better, I would probably consider the a/d, but not at six months.  Again, just my "non medical" opinion.

 

Best wishes,

 

V

 

 

 

[[ve...]]

He is having a resident search all online medical references and my

history to find a possible solution fitting my chemical needs. He even

listened to me when i told him i react very strongly to chemical assists at

low doses. no hammers here, more delicate I hope.

he wanted to reinstate clonazepam at 1mg as a pure short term stopgap to stabilise me, but i said no. he said OK. no pressure.i later reconsidered, called and left a message saying that stability might be welcome, as i am feeling nasty w/d with burning and spaced out but i didn't have these symptoms before oxycodone and clonazepam.He did NOT prescribe something at the drop of a hat at all in the standard trial and error, torture the patient style, and ran all the various names of meds by me to see what hadn't worked, then lumped them into possible groups to pick from, then they will dig thru them and my history to see what might help.

If i didn't have GERD this would be easier too. Co morbid sucks.

 

Hi Regaudio.   I know this forum and most benzo forums typically do not encourage reinstatement, but if you went off 2mg klonopin pretty fast (in a month or two)  and it's only been around 1-2 weeks since you stepped off as your signature indicates, I think it might not be a bad idea to consider reinstatement to 1mgK or perhaps cross over to valium (20mg).  I think TC did reinstate to 1mg K and was happy he did a slow taper from there.  It's not a guarantee and it will likely also have its share of unpleasant s/x but it might take the edge off your intense symptoms now and could be a smoother ride to do a slow taper.  Also, it sounds like you may have a supportive doctor which is half the battle. As far as throwing a whole bunch of other medications at you, I'd hold off on that if I were in your shoes, short of feeling suicidal or extremely depressed and not sleeping at all.  Also, reinstating may help you get some sleep if that has been a particular problem.  I also had GERD by the way.  I'm sure you're aware that nexium and prilosec type PPIs interact with and impact the absorption of the benzos so if you're on them, don't stop them suddenly during taper.  I just completed a slow taper off prilosec and working on getting off zantac the next couple weeks.  By the way, I c/t off valium a couple years ago and had such bad vertigo and anxiety that I reinstated 3 weeks later and then did a slow taper a few months later.  I feel it was the best decision for me at the time and I do not regret having done it.

 

Best,

 

Vertigo

(I am not a doctor.  Always make final decisions for tapering and other medications with your own physician).

[[Sw...]]

Vertigo -  A few days ago I quickly read a post by you and now I can't find it.   You said something about a doctor teaching you that many people who have anxiety feel a need for a sense of belonging, fitting in, etc...   Do you remember that post?  If so, when you get a few minutes could you tell me a little more about what he/she meant?  

Take care all!

[[ve...]]

Vertigo -  A few days ago I quickly read a post by you and now I can't find it.   You said something about a doctor teaching you that many people who have anxiety feel a need for a sense of belonging, fitting in, etc...   Do you remember that post?  If so, when you get a few minutes could you tell me a little more about what he/she meant?  

Take care all!

 

Hi SweetPepper.  The book I am currently finishing is by Brene Brown called "The Gifts of Imperfection". The author talks about the differences between "fitting in" and "belonging" in the context of shame.  Anxiety is often a reaction to trying to avoid shame, blame or embarrassment.  Ms. Brown is a social worker and professor, not a doctor.  I don't recall if that is the post you are referring to.  I think I may have made it on the "cold turkey" thread.  Hard to remember which thread I posted it on.  Anyway, if that's not it, it could be something else.  I think I also mentioned another book on forgiveness that I read recently too, but not sure which thread that was on either (sorry, post benzo brain is not functioning "perfectly" today ).  How's your boy doing?  I'm Mr. Mom this week as my wife is out of town.  Having some good quality bonding time with my son. I have a new found respect for moms and single parents!

 

Best

 

V

[[Sw...]]

Thanks for the info.  Yes, thats it.  That rings a bell.  I read a book called, "Raising Cain"  (good book but it scared me a bit - it deals with issues that boys specifically deal with as they are growing up).  From reading that book I learned how shame and embarrassment affects boys.  The doctors (psychiatrists) who wrote the book say to never punish your child in front of others.  Should always be done in private (i.e. - avoid shaming/embarassing them in public).  Apparently it can have a very long term negative impact.  This makes sense to me.  I read your recent blog entry and commented more there. 

[[as...]]

Thank you so much, V!  I need to hear this kind of encouragement.  I think deep down I know these things but it really helps to have affirmations.  And the reason that I started taking the benzo in the first place is because my pdoc prescribed it along with lexapro after my grandmother died.  that same year i also left the peace corps because of a great deal of difficulty and safety issues which left me feeling pretty down.  i was doing well though for several months and then my grandmother died and I was down again and crying a good bit.  However, that said, I realize now that I was just grieving!  and the depression was nowhere near as bad as what i have experienced since being on the meds and getting off of them!  so i was never prescribed the benzo for a real reason.  he just said "take these and you will be better, your father has this condition and you do too.  it is just like a diabetic who needs insulin"!  completely ridiculous.  but i was willing to take the pills.  but i had no idea what i was getting myself into and he sure didn't either and would likely argue with me about it today if i engaged him in such a conversation.  i did have a conversation with one of his colleagues about kp, someone who did not know me at all.  i just went into the clinic for a supposed infection (now know it was a benzo w/d symptom) and got him cause he was the only one avail.  he proceeded to tell me that i have an addictive personality and that people come off kp all the time w/out a problem.  he denied that kp had an equivalent to valium and i insisted that it did and the amts. were huge.  he said, well, even if that is the case, it is not a big deal!  anyway, i guess some of my anger is coming out now.  but i am actually grateful for this experience even if i do not always seem so in my posts.  i know that this process is changing me in a lot of positive ways.  i just have to come to grips with the continual onslaught of sxs that i cannot control.

 

oh, and Deplin is supposed to be a medical 'food'.  methyl folate i believe.  but i still don't trust it. 

[[Re...]]

Hey Ginger,

 

Wow, two years at 3 hours!  My heart goes out to you.  I'm just amazed that we can function off of so little sleep.  When I awaken, usually around 3:30-4:30am these mornings, I just lay there so disgusted, frustrated, and angry.  My brain tells me to get up and deal with it, but my body doesn't want to move...at least not until it's time to get up and prepare for work.  Once I am up and about I begin to feel okay.  I'm trying not to dwell on lack of quality sleep, but 18 months is a heck of a time to try and keep your mind off of what the body definately needs to function and to stay alive and well.

 

Ginger, thanks for chiming in.  The day will come when sleep will no longer be elusive for any of us; until that time, there is nothing that we can do but let time when its course.

 

Sleepy, droopy, red eyed and somewhat fatique, but forever staying the course.  Hang in there fellow BBs.

 

Retire2010