Post Benzo Freedom Withdrawal Support Group

[[vi...]]

What do you do when the world (financial realities) simply won't permit you any more time to recover, but you're still a long way from being fit enough to work? I can't be the only one of us facing this. What have you done?

[[BY...]]

What do you do when the world (financial realities) simply won't permit you any more time to recover, but you're still a long way from being fit enough to work? I can't be the only one of us facing this. What have you done?

 

This is a question I asked myself the first month of my C/T.

 

I could have taken a medical leave during that time but, that sill wouldn't pay all the bills and really didn't want anyone to know, what I was actually going through. However, I did take a vacation when the symptoms were too extreme.

 

For many months, I battled in my mind. One side would say, today you're going to fail and the other side would say, keep going, look who depends on you.

 

Maybe ignorance was bliss for me, because I didn't fully understand what was happening as far as how long and how hard W/D's and sx's would be.

 

I made many mistakes doing my job and looking back, sometimes, wondered why they didn't fire me.

 

Vita, It would be a lie for me to say it's easy to work with all the symptoms, as everyday, it's still a challenge at times, but it can be done.

If you want to work, all you can do is try and no one can condemn you for that.

 

 

[[ve...]]

Thanks Mike.  That's very good advice.  I hope to try some new work things and I think you have a good attitude about work.  I think one has to be willing to make some mistakes and understand everyone does, not just those of us struggling with benzo recovery.

 

Best,

 

V

[[Cr...]]

hey Guys,

 

Dont know if I'm doing this in the right support group...I'm 46 days without K and still struggling...Was thinking about taking trazadone to get me thru. My sleep is erractic and I know everybody's system is different however what is putting me on alert is that I was only on Klonopin for 3 months and only upto 1 mg---- I feel I should be sleeping thru the night by now-- any input is appreciated--- 

[[...]]

Hi,

 

We have talked before, but I will give my input on the sleep issue.

 

Benzos basically mess with two of the stages of sleep. SWS sleep and REM sleep. It takes some time for these stages to return to normal. Ashton states it can take 6 months to 12 months for these sleep stages to return to normal. I am not saying it will take that long for you, but at six weeks post benzos not being able to sleep well is totally "normal" for this process.

 

The only other drug I have ever taken is Trazodone. Did it help me sleep. Yes, especially when combined with Klonopin. Hehehe. Would I ever take it again on a daily basis...no way.

 

 

TC

[[Ma...]]

Cj, I'm with TC, Don't take a drug at six weeks out to medicate a normal symptom. My sleep has been surprisingly good for someone in wd, pretty consistent, but then I'll have a couple of nights like the last two (I hardly slept at all and then not much last night so I slept in... till 2:00 pm!!). The crazy dreams are back, I swear I wake up tired from their intensity, though I usually kind of enjoy them. Sleep dep makes everything feel worse but hold on, it passes, the sleep thing passes for absolutely everyone.

m

[[gi...]]

Hi CrazyJo,

 

Sadly, anything longer than 2 weeks is too long on benzos, and 6 months is a pretty average time to still be in w/d.  Your sleep will return eventually. Any drug you take is going to impact your CNS negatively right now.  IMO you've just got to let it heal.  Try chamomile tea, meditation music, warm baths before bed, no computer one hour before bed, and turn your clock to the wall.  The more anxoius you get about not sleeping, the worse chance you'll have at falling to sleep.

 

Any other symptoms you have will go in time as well.

 

Hang in there,

 

ginger

[[ve...]]

Hi Vertigo.

I am currently reading Eckart Tolle, "The Power of Now".  Have you read this?   Boy, it all seems so amazing to me.   How did he go from being a anxiety ridden, depressed mess to having all these revelations?   I can't seem to grasp how to practice what he is telling us.   I am going to have to re-read again and again...

 

Indeed I have.  I also have some of his dvds.   You can find a nice talk with a book on Amazon called "Stillness Amidst the World, Finhorn Retreat" for about $18.  I enjoyed watching that and other dvds of his.  Oprah is a big fan of his

 

Best,

 

Vertigo

[[Re...]]

Hey Verti and BB Family,

 

18 months and counting!  How do I feel?  I still hear the bells of tinnitus, but they are very, very low these days.  My sleep sometimes is good and sometimes not so good.  New symptom:  ticks/twitches...watching my skin crawl is rather amusing :laugh/annoying .

 

At this point, I continue to put in my healing time.  Maybe in another 6 months or so my sleep issues will be totally a thing of the past.  At any rate, life is still treating me well at 90-95%. 

 

The beauty of this journey is that we all ultimately heal.  Hang in the fellow BBs.  Continue to stay the course.

 

Retire2010

 

[[ve...]]

Thanks for the post Retire.  Always good to see ongoing progress on the post benzo journey . I'm about 3 months behind ya.  I'm also at about 90% (15 months for me tomorrow ).  It doesn't feel like I've made so many measurable strides in the last few months although I have tapered off prilosec and I continue to sleep well despite some stressful situations.  I'm hoping to get a better handle on anxiety and taper off the zantac that I've replaced the prilosec with so that I'll essentially be medication free, aside from a small dose (10mg) of pravastatin for cholesterol.   I have a physical next month and will recheck my cholesterol at that time.  I had been on 20mg which I cut in half last Fall, against my doctor's wishes .   What is it about these docs wanting to keep us on medication???  Anyway, we'll see how the next three months goes.  2 years ago (February 2009) I was just starting my valium taper and was not in good shape.  One year ago last February (2010), I was 3-4 months off valium, had adrenal burn out and Shingles .  So this February 2011 is looking a lot better .

 

Best,

 

Vertigo

[[st...]]

I have learned that we have to look back to see how far we have come from the beginning of this process.  For me, my taper and 2 months post taper were horrendous.  I actually thought I was about 85% healed at the 3 month mark-off date.  I went on vacation and helped my daughter lay 4 rooms of hardwood flooring (yes I can do this).  I got slammed at the 7 month mark and was right back to being down for the count with many new symptoms appearing.  I continued to see improvements until I got hit at the 11 month time period.  "Waves' were longer than the 'windows' and the windows weren't very nice.  This lasted until another huge 'wave' occurred at month 24 which lasted about 2 weeks.  Many symptoms disappeared and I was experiencing a new found freedom but still with some annoying symptoms.  The hypersecretion and cough lifted and the breathing was so much better.  I will be off xanax 30 months in a few days.  I am now in another 'wave' and hopefully after this passes I will see more improvements.  For me, the 2nd year was worse than the first (not counting the taper and post acute period).  There has been many improvements  going into the third year.  I know for those newbies reading this post that you are hoping this won't happen to you and that, logistically, is very true.  I can't believe it happened to me but I have learned that the mind and body can eventually achieve homeostasis.  A positive mindset is a must.  Not once did I think I could never achieve my goal of being benzo-free.  My life and family is too precious.  I am hoping I will be healed by month 36 (hey, we all have to have goals) but if I'm not I will keep plugging away until I am.  I have had a few days of normalcy so I know it will happen.

 

Love to all,

 

Patty  xoxo

[[ve...]]

I have learned that we have to look back to see how far we have come from the beginning of this process...

Love to all,

Patty  xoxo

 

Hi Patty. I agree that if one looks back to where the process began and make note of positive milestones along the way to where one has come, it can help to encourage a more balanced outlook as far as the future is concerned.  I sometimes think twice before posting some setback or wave because as you mentioned, one doesn't want to discourage other folks who might be only recently benzo free or perhaps a month or two post taper who might infer that it's going to be years before they feel well.  For one thing, even though I'm personally coming up on 15 months tomorrow, most of my symptoms were gone at 5-7 months (80%).  

 

I think it's important to remind folks who are recently benzo free that 3 years is not the norm for recovery nor is it likely to take most folks 2 years.  In my case, I've been at about 90% since October (10-11 months).  18 months is looking awfully good from here, but as Ginger mentioned in an earlier post, that didn't work out for her so you can't really predict how it's going to go and yes, there's always a chance of a setback.  I think it's good to be honest about it so folks aware of the possibility although not necessarily a probability.  I was hit with vertigo last month at 14 months so go figure. . Fortunately it's gone now.

 

If you're on a benzo forum more than a year out like some of us still are, the odds are you're/we're probably in the minority, just my opinion.  That doesn't mean that people who left don't still struggle with some symptoms, probably means they're able to get support elsewhere and/or are functioning pretty well or maybe they found another forum.  I'd venture to guess that 90% of folks have a better 2nd year off benzos than the first, but I am sorry to read that your 2nd year was worse than the first Patty. No doubt protracted withdrawal must be very discouraging.

 

My guess is that most folks probably move on in the first six months to a year (just a guess) unless they're possibly sticking around to help some other folks across the finish line, something I've tried to do here as well and I think you have too Patty.  I don't know the percentages but I'm guessing it's around 50-60% are gone in the first 6-12 months.  Probably another 25% move on by 18 months.   I'm not saying that this even really matters but I'm just speculating and would be curious what others might think.

 

I don't know what percentage still have significant symptoms at 2 years or beyond but I would guess it's less than 20%.  I truly feel for those who do go protracted, although I believe it's not too common from what I've seen.  I sincerely wish this next six  months as you approach 3 years post benzo will heal most if not all your remaining symptoms Patty.  In my case, I think Shingles set me back some when I was unfortunate enough to get it at about 2 months post taper off valium last February.  It was exactly a year ago that I was in the midst of severe nerve pain from Shingles.  To be honest, I wonder if some of my symptoms today are more related to Shingles than benzo recovery. Either way, my CNS was impacted by both to some degree and time seems to be gradually healing things along with taking some proactive steps towards better health.  I wish all of you the same (not Shingles ), ongoing healing and recovery in your post benzo journey.

 

 

Vertigo (no more)

[[Co...]]

Hi, Im feeling really, really scared about the very severe phsical sx I have. Everyday is a huge struggle, I just dont know if I can live  minute to minute anymore when even showering is painful. How do we hold on for years of this? Colleen

[[st...]]

If you read my blog you would never know the horror I was going through because I , too, didn't want to upset the new members.  Hindsight, I don't think this really helps the members get a grasp of the reality of tapering.  I wanted and still want to know the full scope of this process.  I didn't and don't want any surprises.  For me, Vertigo, the remaining symptoms are the ones that were the worst for me from day one.  I would say 80% of my symptoms were bearable.  I could tolerate the anxiety, panic attacks, GI issues, burning skin, etc.  They were a piece of cake.  Not being able to breathe along with the 24/7 cough from mega mucus production and the horrendous fatigue put me in a place where I couldn't do one single thing with my life.  I so, so envied those that could take a walk or go to the gym.

 

I am sure you have noticed that some members state they have healed only to come back and relate having been 'hit' again.  I really feel it is time that I should leave this forum BUT I have some people on here that I still need to support.  It becomes very difficult for me to read some of the posts as it does bring back so many horrid memories.......ones that I don't really want to remember.  My coping mechanism is to block any negative happenings in my life and it works just fine for me.

 

Well, Vertigo, our healing is happening even though we may feel like like cr*p some days.  Soon this will behind each and every one of us.

 

I agree with your percentages.

 

Patty  xo

[[st...]]

Colleen, tell us about your physical symptoms.

 

Patty  xo

[[Co...]]

Hi, I have so many, the one that really terrifies me is the sensation that something is moving inside my mouth. It is difficult to explain but seems to twirl in circles, and causes pain and pressure, I didnt eat solid food for almost 4 months because it also feels like teeth moving and numb. It feels like Im choking. I know theres nothing there so I force myself to eat but every time I eat I have to tell myself I can eat. This makes me feel different than everyone else, it is constant and makes me ashamed for not being nomal. I vibrate really bad all the time, I hear it. MY rt foot has constant shocking. My face hurts and pulls. If I only knew that the mouth thing would go away I could live and cope much better. Thankyou for asking. You areall so kind. Oh yes also lt ear has been closed constantly since day one.

[[ve...]]

Hi Patty.  Please don't misunderstand.  I wasn't suggesting that you or anyone leave the forum.  I just wanted to express to some other buddies who might read this thread that it may not be likely to have strong symptoms for years after finishing the last benzo dose.  Your presence here on forum is valued and I hope you will continue to help others here as you have been doing.  

 

Also, I think each person's experience of tapering is very individual and is not necessarily going to be the experience of the next person. Each person has a different pain threshold and unique history. So while I agree that one ought to be honest about how one is feeling, particularly on one's own blog, I think folks "should" always take other people's experiences with a grain of salt.  I know when I was tapering, I had some rough days too.  Yes, I have read some of the individuals who came back to post about setbacks many months later. I think that is not surprising or unexpected that perhaps during a stressful time, one may have an unexpected setback.  It happened to me last month when the seeming trivial act of getting a puppy set off my anxiety where I even had a few days of vertigo return, after 14 months off valium and over 2 years since I had vertigo in August 2008!  More stressful situations like losing a job, starting a job, birth of a child, death in the family, break up of a relationship... are other things that come to mind that might bring on such stress that I could imagine some withdrawal coming back if the CNS were stressed enough.  I think even without benzos, people sometimes suffer nervous breakdowns and/or tremendous grief or pain.  Yes, some folks have come back and maybe reported a setback "for no particular reason" after feeling well for a while.  I view that as pretty normal too, given that benzo healing is not linear.  

 

Bottom line is I think there is lots of uncertainty in life.  One doesn't know when one might get cancer or a family member might get sick, when one might receive some great news or tragic news.  We gotta just live our lives the best we can, whether on or off a benzo.  I think if you've been on a benzo in the last couple years as we have, one might be a little more susceptible to a sensitive nervous system.  This could be from the use of the benzo or the predisposition or state for which the benzo was first taken.  Everyone comes to their benzo with a different history including for some, previous medications and/or emotional or physical troubles.  We can only try and meet each new challenge as best we can.  I agree Patty that "our healing is happening even though we may feel like crap some days".  

 

 

Vertigo

[[ve...]]

Hi, I have so many, the one that really terrifies me is the sensation that something is moving inside my mouth. It is difficult to explain but seems to twirl in circles, and causes pain and pressure, I didnt eat solid food for almost 4 months because it also feels like teeth moving and numb. It feels like Im choking. I know theres nothing there so I force myself to eat but every time I eat I have to tell myself I can eat. This makes me feel different than everyone else, it is constant and makes me ashamed for not being nomal. I vibrate really bad all the time, I hear it. MY rt foot has constant shocking. My face hurts and pulls. If I only knew that the mouth thing would go away I could live and cope much better. Thankyou for asking. You are all so kind. Oh yes also lt ear has been closed constantly since day one.

 

Hi Colleen.  I think that another member named Kid as well as Stardust have had issues with their mouth and throat.  You might check out their blogs in "buddie space" section of forum.  Say hi to them and tell em "Verti" sent ya .  No need to feel ashamed of any symptoms.  It sounds like you've had particularly difficult symptoms since your detox last March.   I hope your pain diminishes soon.

 

 

Best,

 

Vertigo

[[Co...]]

Hi V, I have correspnded with Stardust she has actual tardive dyskinesia attributed to reglan. I know of some others who have dental and mouth discomfort but not like mine. There is no actual movement with mine,, just feels like it. I also know it is just a sensation and cant hurt me but it does hurt and does make me feel abnormal. Thank you for your reply.

[[st...]]

Vertigo, your last post to me was a bit confusing.    I didn't think you were suggesting I or anyone else should leave the forum.    I have been here a long time so I want to thank you for your presence here on the forum. 

 

Patty xo

[[BY...]]

Hi Colleen,

 

In the first few months of my C/T, I had extreme jaw pain, throbbing gums and the the feeling all my teeth were loose. There were several times I would pull on them to be sure they weren't loose. My whole mouth was a mess. The choking was bad also. It was bad enough, having really bad digestion problems, then add the throat closing while I trying to force feed myself. :sick:That was all pretty constant the first 1 to 2 months after going C/T. For months after, I would get waves of those same problems.

 

Because, that was a rapid detox you came off from, with some very high doses, which is a big shock to the whole brain. It may take a little longer for everything to heal itself again, but you will heal.

 

Mike

 

 

 

[[ve...]]

I really feel it is time that I should leave this forum BUT I have some people on here that I still need to support.  It becomes very difficult for me to read some of the posts as it does bring back so many horrid memories.......ones that I don't really want to remember.  My coping mechanism is to block any negative happenings in my life and it works just fine for me.Well, Vertigo, our healing is happening even though we may feel like like cr*p some days.  Soon this will behind each and every one of us.

I agree with your percentages.

Patty  xo

 

Hi Patty.

My comments were based on the above post you made recently.  I may have misinterpreted and certainly did not wish to suggest in any way that you or anyone else leave forum.  Whether one is off 3 months or 3 years, we all are here to support eachother.  I just wanted to make sure that you weren't offended by my suggestions that others be made aware (from time to time) that most folks are not going to be symptomatic for the latter time frame.  I think you had brought up the salient point about how one sometimes feels one might wish to restrain oneself from expressing "severe" s/x that might discourage others.  I have always felt that people ought to be honest and forthright, as long as newbies and others understand as I've stated many times in this thread that one person's experience is not necessarily going to be what the next experiences.  Even if many things are similar, such as type of benzo used and even similar time frame.  One person who was on a low dose of valium might have more severe withdrawal than another on a high dose of another benzo...  I would rather hear honest posts about your experience as you made recently than hear sugar coating, but maybe that's me.  I know others might wish to be encouraged and hear it'll all be great but I think honesty is the best policy when it comes to posting, again with the caveat that each person will have their own unique withdrawal and recovery.

 

Best,

 

Vertigo

[[gi...]]

Patty,

 

I wish there was some magic word I could say that would end this for you once and for all. You've always been a role model for me as your strength and acceptance is what got me through some of my darkest times.  It's scary and discouraging to read that after 2 years you were hit once again, but I must keep in mind that everyone is different.  I do hope that you're one of the "36 monthers" and that is that.

 

 

V,

 

I agree with your percentages.

 

I've read all over the place, that certain illnesses cause a resurgence of symptoms, which is what I now call "benzo damage" rather than PWS. This was confirmed to me by a nurse practitioner who has extensive experience with benzo w/d and PWS.  I think persistent symptoms are protracted/PWS, but things like illness-caused resurgence, hypersensitivity or intolerance to drugs and supplements, and hypersensitivity to pain is more benzo "damage", seem to be of a more permanent nature.  For me, I can no longer take hydrocodone and oxycontin, (acetamenophen in general) and have been warned (by my doc and the NP) to never take steroids ever again. I'm afraid of sustaining any injury that will require pain killers.  The hydrocodone and oxycontin I took after knee surgery caused a resurgence that took about 5 months to subside.

 

As for me,

 

At the end of month 23 - ironically, exactly as long as I was on klonopin - things significantly improved for me.  In fact, aside from my relentless tinnitus and a R eye that feels like there's film on it, all of the symptoms that remained up to that point have become only ones that flare during stressful moments here at 25 months.  And miracle of miracles, just a couple days ago I had about 5 minutes of NO tinnitus - something I never, ever thought would ever happen!  The "best" part was that, while it came back with a vengeance, I readily accepted it. The fact that it stopped for even that short amount of time was the most encouraging sign I've had so far that even it can go away in time.  Now if my eye would give me a break for even 5 minutes..!.

 

I must say, though,  my cognitive deficiencies continue to plague me. I've had no improvement in that regard in all this time. Having read that some research suggests cognitive benzo damage has potential to bring on early dementia, and dementia and Alzheimer's are in my family, scares the hell out of me. Poor sleep also causes brain burnout (just saw this news on ABC) so I'm bracing myself.

 

I feel like I should leave here, too, but  the support and friendship I've received is hard to let go of. I've replaced one addiction for another.  And try as I might, I start to reach out to newbies but their stories are all so similar and pain all too familiar. And more keep joining every day...  I know I have PTSD - I think that is the one residual "symptom" that's inevitable and permanent - but I can minimize it by not sharing my story, or reading others', on a regular basis.

 

As with any tragedy, joy or illness (our own or others), fate strikes each one of us differently. And, like grief, how we accommodate it; how we adapt to it and accept it, determines our quality of life.

 

I think that anyone who goes through this comes out a stronger person, regardless of the intensity of their symptoms. Thank God that the majority of people who take this poison walk away unscathed. Still the fact that 10-15% end up with acute w/d and then 15% of those end up with PWS, is far, far too many.

 

Love and peace to all.

 

ginger

 

 

 

[[gi...]]

Colleen, BYBY,

 

I also had bad mouth problems in the beginning.  It felt like my teeth were falling out too. I had mouth sores erupt which sent me to the dermatologist for biopsies. I had burning mouth syndrome for the better part of 2 years:  my front gums & teeth and tip of my tongue felt like there was a blow torch on them constantly. It also felt like I had razor blades stuck between my bottom teeth.  My tongue was also rigid and stuck to the roof of my mouth for the longest time. 

 

Today my mouth burns only on occasions of stress, thank God.

 

Colleen, please hang there.  It does appear c/ters and those who do a "slow turkey" like myself seem to take longer to heal, but it really does happen eventually.  Try to accept your situation as best you can, and do what you can, when you can.  It WILL get better. I can promise you that!

 

ginger

[[sh...]]

Ginger do you remember where you heard the % for PWS you quoted?  I just don't understand why I feel so bad when I was on such a low dose for about a year.  Thanks  Sharil