Long-Term Users group - w/d and recovery after longterm use

[[Ba...]]

Interesting way you phrase it, 'no ability to tune things out.'  Me, too.  Everything startles or upsets me.

[[NJ...]]

I am wondering if anyone else started off as a child on benzodiazepines? I was either 14 or 15 when I started on 2 mg Ativan daily.

 

When I went off to college, the psychiatrist there added Klonopin on top of it. I have found journals from that time period, and I honestly don't remember much of my time. I was still incredibly anxious but started suffering memory loss. In the journals I wrote about showing up for classes on the wrong days/times, etc.

 

I had to drop out of college due to extreme anxiety, and I honestly don't remember how much benzos I was on for a long period. There was a psychiatrist who eventually streamlined my meds so I was only on one benzo and at that point it was 4 mg Ativan. But there are years from that period in between I just don't remember. I've never taken anything other than prescribed and never used alcohol or any other recreational drugs.

 

For a long time now, I've been on 3 mg Ativan and 6 mg Valium.

 

Because my anxiety was so bad on the regimen I've been on and my physical symptoms have gotten worse, and beacuse my OCD is out of control, and because I have a very odd/anxiety-provoking relationship with my psychiatrist, I honestly had resigned myself for a while that this was just going to be how my life would play out. I'm 36.

 

I'm now in a situation where my psychiatrist has gone so off the rails into alternative expensive meds that my PCP is concerned, and the psychiatrist has created an ultimatum that I try her experimental treatments or find someone else.

 

I know if I see anyone else I will need to taper, but I'll also probably get better help for my OCD.

 

I've seen a neurologist because I have shocks and near fainting episodes. He said he has never seen anyone as anxious as me before. He was uncertain whether I could come off the benzos, but he also didn't want to be the one responsible for them.

 

I feel very much at a loss. I spent my 20s so anxious about the benzos that I couldn't even read about them. I recall starting to read horror stories and having to look away. It was like looking at the sun. I would glance and look away. So I had terrible anxiety about going off before even going off. Back then I was the one asking psychiatrists to help me taper but they didn't want me to. Now with the opioid epidemic, I've already been turned down by several places I've called for an appointment when they find out what I take. I was just as terrified going on Ativan. I remember that psychiatrist saying, "I'm the pilot of this plane. Do you tell the pilot how to fly the plane?" And he said I would be just as anxious about taking aspirin if I knew the side effects as I would taking Ativan.

 

I just don't know if there is anyone like me. I was taking Ativan daily in 10th grade. A lot of the brain development happens during that time period.

 

I know all of the harms of benzodiazepines, but I also don't know what's on the other side. I hope this doesn't sound offensive, but I kind of think of it like chemotherapy as an analogy. Sometimes a person with cancer decides that the quality of life is possibly better without trying more treatment. That's how I think of benzo withdrawal--like a huge question mark.

 

I know that being in tolerance withdrawal has affected me negatively. The first time I crossed from 4 mg Ativan to 3.5 mg Ativan and 5 mg Valium, I left a spiral I had been in for many months prior where I lost 40 lbs, was shaking nonstop, couldn't sleep etc. When I made that switch I was able to go back to college for a summer semester, take a class 4 days a week, was able to stop my beta blocker and I could walk around with ease--even up hills. Right now I struggle just to tolerate standing to take a shower--my heart pounds so hard just from standing (for which I take a beta blocker that helps less and less). I've been told that I seem to have POTS, but the time I crossed over like that for a short time the POTS symptoms went away.

 

I think it's because I effectively updosed when I made that crossover. My psychiatrist did a genetic test that shows Valium is disproportionately strong for me. So on paper (according to some equivalencies) I was still taking a theoretical equivalent of 4 mg Ativan, it was really more potent.

 

Later that summer I had cut back on the Valium, I think only by 1 or 2 mg and that next fall semester I took just one college class that only met twice per week and I was falling apart physically again. And after that I dropped out of college and haven't been back--that was 2014.

 

I've just been at home with my parents, barely able to do activities of daily living. We've even had a nurse come out to see if I would qualify for help with certain things but I didn't qualify for the Medicaid waiver. It's bad enough that I have to brush my teeth lying down due to getting out of breath and trouble tolerating standing. Standing my pulse is always over 100. And the OCD is also very severe.

 

My psychiatrist shifted her focus away from benzos and is very anti-SSRIs right now. She is filing class action lawsuits and doesn't want to prescribe the Paxil I've been on, and wants me to take various bizarre treatments that my PCP does not think are safe or good for me. She's sort of a "famous" psychiatrist and tends to do odd things--class action lawsuits, forensic works, and she is into whatever is new with pharma drugs.

 

I went to my PCP today and showed him the Ashton Manual. He was open to it but said he would want me off all the benzos in a year. However, before taking on my prescribing he still wants me to meet with the psychiatrist in their practice. I've looked at his reviews online and they're all bad--people saying he makes them sign contracts and fires them sometimes with no reason. He's also 70 years old and was just hired by this practice, so I'm a little wary. They have trouble keeping any psychiatrist in that office.

 

The way my psychologist described it to me the other week is that I have been willing endure psychiatric abuse (from my psychiatrist) because I'm so afraid of making a change to the benzos--he then added that he himself wasn't sure if I could come down off the benzos. I don't feel like going into all the details about my psychiatrist because what she's pushing is so specific and narrow I have paranoia it would show up on a Google search result. But the short of it is that she is a paid speaker for various pharmaceutical companies and pushes very expensive drugs that are not for their original indication. She is now at the point where she said I either take a med that my PCP believes would be bad for me and go off all the Paxil, or she's terminating.

 

So that's where I'm now finding external motivation for tapering. Because I don't think anyone is going to continue prescribing like she was. She's adamant however that my problems are from the Paxil. And she has a drug that she says will go in and fix the damage caused by the Paxil. But I can see my OCD has gotten worse over time as she's reduced my Paxil dose. She's told me she won't prescribe Paxil anymore and that I have to take this other drug to fix what she calls Paxil brain damage or she's terminating me--and that drug to "fix" the brain damage is the one my PCP is wary about, as am I.

 

I'm just wondering if there is anyone else out there that started before age 18 like I did. I worry that it's just too unknowable to know whether I could get better or not. I know people know the harms, but it's not as if anyone done a control to know if those harms are worse than harms if someone who started benzodiazepines in their teenage years and has been on them for more than 20 years tapers them.

 

Things have gotten worse over time especially with physical functioning and OCD, and in a way I haven't really been planning a life.  I've been watching as it happens to me, resigned to it. I know that sounds very depressing, but the odd thing is that I don't feel the feelings of sadness. I probably have the actions (or more the inactions) of a depressed person, but maybe I wouldn't even know what sadness feels like. I have accepted a life that others would not accept for themselves.

 

Marcus,

 

I was put on librax, a benzo and anti-emetic, in third grade. A doctor told me to come off at 24 (so that is 16 years of use, I can't even think about it), and then I began taking Klonopin at age 31, I am now 50.

 

I have tried to taper the Klonopin and feel like I am never going to get off. When I think about how long I have been on, I honestly have no idea if I can get off or not. It's depressing. Luckily I have lived a fairly "normal" life, I have two kids, have been married for over 25 years, and have a job. BUT the older I get the more I realize how much my anxiety has held me back. It is what it is, no one's life is perfect but it is hard to see people who have gone on to do so much more than I have professionally ... I also have few friends. I have long term issues with nausea and GI distress which I am beginning to wonder what is causing what ... is the anxiety causing the GI distress or is it the benzo? Maybe it doesn't matter.

 

You are still young and you can still heal and live a wonderful life. Good luck to you.

[Guest [Lo...]]

Hello,

Any long term users still on this board?  I have been on Klonopin for at least 20 years and would love to get off.  Any help would be appreciated.  Thank. You

Lookinup

[[Kg...]]

This is not a very active board.  I  suggest you try the Klonopin Klub and also some of the tapering threads vs this one.  Many people here were and are long term users and you can get lots of support or suggestions from those who have gone before you or are successfully tapering right now.  Good luck. 

[[Ba...]]

Me!

[[Gr...]]

Updating now, after one whole year off.  I was taking klonopin for 27 years.  Things are much better than during my taper.  I am still not feeling the sharpness of my mind, but I know it's improving.  I have a lot of forgetfulness, that got really bad during the withdrawal.  I was having some problems remembering things, especially learning new things, while on klonopin, but it was during the withdrawal, where the memory issues seem to have gotten very very bad. 

 

I can read books again.  I have a newfound enjoyment for music, singing, paintings, all kinds of art, really.  I see beauty in nature that seems like it wasn't there before.  My sense of taste and smell are improved, and my sense of smell was practically gone before.  I couldn't even smell things burning, which is concerning, just as a safety issue.

 

My physical ailments are much better.  I don't have pain all the time, and my shoulder and neck pain are intermittent, but relieved with massage therapy and/or acupuncture.  I can't wait until stretching actually feels like it helps.  I have more stamina now, but I am still wary of overdoing it and starting a wave. 

 

Honestly, it's my cognitive ability that I was longing for now, to come back. 

[Guest [Lo...]]

Updating now, after one whole year off.  I was taking klonopin for 27 years.  Things are much better than during my taper.  I am still not feeling the sharpness of my mind, but I know it's improving.  I have a lot of forgetfulness, that got really bad during the withdrawal.  I was having some problems remembering things, especially learning new things, while on klonopin, but it was during the withdrawal, where the memory issues seem to have gotten very very bad. 

 

I can read books again.  I have a newfound enjoyment for music, singing, paintings, all kinds of art, really.  I see beauty in nature that seems like it wasn't there before.  My sense of taste and smell are improved, and my sense of smell was practically gone before.  I couldn't even smell things burning, which is concerning, just as a safety issue.

 

My physical ailments are much better.  I don't have pain all the time, and my shoulder and neck pain are intermittent, but relieved with massage therapy and/or acupuncture.  I can't wait until stretching actually feels like it helps.  I have more stamina now, but I am still wary of overdoing it and starting a wave. 

 

Honestly, it's my cognitive ability that I was longing for now, to come back.

Glad to hear your good news.  So there is hope.  Haven’t even started taper yet and getting major withdrawal symptoms.  Waiting for thyroid levels to stabilize first.  Hope to be where you are someday.  Did you get horrible symptoms?

[[Ma...]]

GreenCup, congratulations on all the things that have improved  . Everything else will follow in time.  I hope it's soon  :smitten:  Mary

[[Gw...]]

Updating now, after one whole year off.  I was taking klonopin for 27 years.  Things are much better than during my taper.  I am still not feeling the sharpness of my mind, but I know it's improving.  I have a lot of forgetfulness, that got really bad during the withdrawal.  I was having some problems remembering things, especially learning new things, while on klonopin, but it was during the withdrawal, where the memory issues seem to have gotten very very bad. 

 

I can read books again.  I have a newfound enjoyment for music, singing, paintings, all kinds of art, really.  I see beauty in nature that seems like it wasn't there before.  My sense of taste and smell are improved, and my sense of smell was practically gone before.  I couldn't even smell things burning, which is concerning, just as a safety issue.

 

My physical ailments are much better.  I don't have pain all the time, and my shoulder and neck pain are intermittent, but relieved with massage therapy and/or acupuncture.  I can't wait until stretching actually feels like it helps.  I have more stamina now, but I am still wary of overdoing it and starting a wave. 

 

Honestly, it's my cognitive ability that I was longing for now, to come back.

 

Hi GreenCup!  I'm so glad you're feeling better. It's amazing when life seeps back in, isn't it? I remembered my love of nature during withdrawal too, and started going for very long walks outside as my health improved. And that's wonderful about your creativity! I started writing again over the summer, so I get how huge it is to tap back into that part of ourselves. Your cognitive abilities will return, too. (That's been my latest "growth spurt.") Hang in there, it gets better from here!

 

Gwinna

[[Cu...]]

Marcus24- I just spent a while reading your story and although I wasn't on benzos as young as you, I started them at age 19, I did take them for 27 years, and taking them for so many years really does let them make their mark.  So I took a long time to taper off, and I did try SSRIs and found they helped and then stopped really helping and just gave me side effects.  So sometimes just that little bit of helping was worth it for me though. 

 

Here's some things I think you might want to consider, as I didn't realize when I was on benzos, how many things were being affected by them.  So maybe your OCD is being exaggerated by being on the benzos.  I had some terrible anxiety while on benzos, and I have been off for six months now, and I don't get anxiety like that anymore.  I am able to hear my thoughts now, and try to work on changing them via therapy or whatever.  I was not able to do that on benzos. 

 

Benzos cause anxiety and also other really weird things.  I saw a study saying that long term benzo use can leave people unable to take care of themselves.  Basically they can cause a disability if taken long term.  Also they can increase the risk of dementia in old age.  That was one that really encouraged me to go off of them. 

 

I have been very surprised at how much of my anxiety and feeling unwell was because of the benzos and how much more control I have over my life without them.  I know am trying to come to terms with where I am now, and try to not just be bitter about what I lost because of the drugs. 

 

I would also advise you to taper very slowly and know that tapering will not feel great, but during the taper will be much worse than after. 

 

I really feel for you.  It sounds like none of the professionals you are dealing with are even acknowledging that your problems could be caused by the benzos.  This was the case with me as well.  It honestly has been so surprising to me how much of my problems were actually caused by the drug.

 

Glad for you that was your experience.  However, not mine.  I'm off 9 months now & sxs worsened when daily dose got low/around January.  Ever worsening since jump in May w/none in system.  Sxs in signature line.  Pain is daily & excruciating.  Life is solely an existence of endurance through suffering & I'm quite sick of it.  Pain management was reason for the ativan & concern is that I won't have any type of life w/out pain, w/out it.  I most certainly do feel that CNS is broken.  Will it repair?  I have only the words of online, non-medical strangers to go on.  How long?  Unknown.  No longer trust medical community.  Have seen so many here running from test to test; only for negative results, w/doctors refusing belief that it's benzo-caused, or related.  It seems all doctors (besides surgeons) do is test/rule out. Oh, & let's not forget prescribe whatever medications pharma reps. are being given bonuses for that week or month foisting on doctor's offices. Then, casually, w/out conscience stopping prescriptions of medications which require slow tapers.  The problem w/benzo w/d is that sxs mimic a plethora of actual illnesses: The broken CNS.  Stayed positive throughout taper, only for this outcome. 

[[Ca...]]

need support and help on what to do.  i cannot updose, as i am in tolerance WD, the ativan doesn't work on me anymore. it's like placebo.    Since mid Sept i have come down from 3.75 mg  to 3.10  mg of ativan.  i was ok doing .02 cuts per day on MLT, but, i changed measuring cups and realized too late that my old measuring device and this onee aree not equivalent.  so, for the oh, 3 weeks, i have been tapering fast and didn't know it.  probably doing .04 a day. i don't know. i really don't.  i just know that 3 weeks ago, i started adding more water to batch of solution, and didn't realize it.  so, the last 3 weeks aree what's getting  to me.  slapping me upside the head.  because in 3 weeks i went from 3.30 down to 3.10.    pleasee what can i do ?? i cannot updose, is my only option holding and riding it out, it's pretty intense.  i felt ok doing the nice .02 cut per day, then i goofed up .  darn it.  help, someone, please, thankyou, kindly.      help, please.  do i updose or hold orr what, my brain cog fog is so instense, it has an amnesia like quality.  and my guts hurt and my body aches everywhere.    pleasee, some kind soul help me get on the right track, i don't know what to do?  alone and afraid.

[Guest [Lo...]]

Anyone still posting here?

 

[[NJ...]]

I do still check in! Nothing to report, still in a long hold, still too much life stress to consider tapering. Thinking about trying to get rid of the mirtazapine first but then I get in a bad place again and hesitate to change anything.

[[Gr...]]

I'm still checking in as well.  I'm having some sinus issues now.  I think my sinuses are messed up because of withdrawal bringing my immune system down.  Tbh, it's not the worst problem in the world to have.  So relatable to other people, which, omg, suddenly means so much to me to have a "normal" and "widely accepted" problem.  It might seem silly but I dunno, I hate when the focus of my life and pain is something that some people have never heard of and might choose to not believe in. 

[[Cu...]]

I'm still checking in as well.  I'm having some sinus issues now.  I think my sinuses are messed up because of withdrawal bringing my immune system down.  Tbh, it's not the worst problem in the world to have.  So relatable to other people, which, omg, suddenly means so much to me to have a "normal" and "widely accepted" problem.  It might seem silly but I dunno, I hate when the focus of my life and pain is something that some people have never heard of and might choose to not believe in.

 

Sinus issues have plagued me for about 25 years...numerous sinus infections.  Too many antibiotics.  Developed c. difficile colitis.  2 bouts.  Not allowable anymore...how to live remainder of life w/no antiobiotics?  Well, not an issue, since I'm not living/only existing (& in a world of pain).  Anyhow, recommend Mucinex.  Just the plain one.  Not w/decongestant.  That can raise blood pressure + after speaking w/pharmacist, it's slippery slope for sinuses, anyway.  Taking 1/2 is keeping my sinuses balanced.  (Not daily, just if sneezing a lot &/or nose is running.)  - The least of my discomforture @ present & for the past 9 months/year.  -  Also, now w/colder temps. use Ayr saline gel.  Q-tip in & around nostrils.  Also, keep a saline spray, on hand, if necessary.  Have also had nosebleeds @ different times, throughout life, esp. w/forced hot air heating, but if I take these measures (which is really nothing, compared to many adjustments I've been required to make to just exist) don't get 'em.  (Knocking wood, I don't now, as it seems the instant I have a thought, I'm then cursed.) 

 

Keep humidity levels in home balanced.  Get a humidistat to gauge.  For me, this is necessity.  I'd left a home which had baseboard hot water heat (left it sadly, that's the best heating system).  Now, live in one w/forced hot air - the worst.  I also think my immune system's been completely destroyed; not only by benzo's.  Did years of infertility treatments/hormone therapies.  Endometriosis w/concomitant infertility.  (No success/births.) 

 

Hope tips help 'ya. 

[[Gr...]]

Thanks so much CuzKK. I actually did get a humidifier earlier this week, and I have a noticeable improvement.  I've been rinsing with a neti pot as well.  I think the heat in our house is very very dry and definitely adding to my problems.  I also did fertility treatments.  I hadn't thought of that as an immune system destroyer, but who knows? 

[[Do...]]

Hello long termers.  I am crashing in.  Not sure why I didn't find this thread. 

Greencup, I use a small humidifier in my bedroom along with one in the main room.  Make sure ya wash them out with vinegar once a week.  Most mold up pretty quick.

 

The other thing I do for sinuses is huff a little tea tree oil.  I put a couple drops in a bowl of boiling water.  sit down with towel over head and bowl.  The steam is strong so come up for air by lifting your head and towel away for a couple seconds in beginning.  Works great for congestions too.  I add some eucalyptus oil if a head cold. 

Remember, just a few drops.  Too much can kinda burn and choke ya.  Make sure ya use a quality tea tree oil.  It's antibacterial properties really work on my sinus infections.

 

Greencup, I am coming up on my year off.  A whole lot of improvements.  Makes the tough waves that much harder to deal with.  Feeling good is sweet.  I am struggling with some cognitive issues as well.  It just feels like inflammation in my brain.  Healing does happen.  We just need a bunch time....and even more strength and patience.

 

[[no...]]

*bump*

[[Br...]]

Yep, I'm going to be *that person* and bump this old ass thread. 

 

I need others who have been on benzos for 20+ years! Do we/can we heal without it taking the rest of our lives?

I would LOVE to have a BB who is in a similar situation!

 

 

[[Si...]]

Hello, Breathincalm.  I'm replying not because I can offer any reassurance, but because I'm wondering the same thing you are.  After 30 years daily use, I did a rapid taper in 2017.  I've been off for 3.5 years now, with no measurable improvement.  I suppose one thing I could do for you is to steer you to the Protracted Withdrawal Success Stories.  I read some of these a long time ago, forgot about them, and just recently rediscovered them, thanks to a reminder from BB Administrator named Pamster.  Here is the link:

http://www.benzobuddies.org/forum/index.php?topic=102142.0

Instead of using the link, you can also get to the same page by going into the BB Home Page, then click on Protracted Recovery Support, then click on Protracted Withdrawal Success Stories.

 

Please don't think you'll suffer the same fate as I.  I took alprazolam every single day for 30 years, and spent several years in very severe tolerance withdrawal before learning about benzos.  The fact that you're able to work a job is a very positive indication for your prognosis.

 

Perhaps others here can contribute more uplifting posts than mine. 

 

Thanks, and take care.

-Jeff (AKA Simonbarsinister)

[[Si...]]

Breatheincalm, I just realized I shouldn't really have directed you to the Protracted Success Stories, since I see you are only one month off.  Try the "regular" success stories instead.  Sorry. 

-Jeff

[[Br...]]

Hi Jeff... thank you for your comment! Glad to see another long term user here. Wow, you're off 3.5 years... that's great!! I'm so sorry you haven't seen any big improvement. That makes me so sad.

 

I like to think I am doing my job well, but who really knows. The intrusive thoughts and strange relationship I have with time is so bizarre. I try not to freak out about them but sometimes I lose that battle.

[[Si...]]

Hi Jeff... thank you for your comment! Glad to see another long term user here. Wow, you're off 3.5 years... that's great!! I'm so sorry you haven't seen any big improvement. That makes me so sad.

 

I like to think I am doing my job well, but who really knows. The intrusive thoughts and strange relationship I have with time is so bizarre. I try not to freak out about them but sometimes I lose that battle.

I have always been somewhat wistful about the passing of time, but in withdrawal it has gotten downright torturous.  Hopefully, this will clear up soon for both of us.

 

Thanks,

-Jeff 

[[Be...]]

Jeff, how did you choose that unusual UN?

[[no...]]

Jeff, how did you choose that unusual UN?

If you mean  *Simon barsinister* its this Beck  https://villains.fandom.com/wiki/Simon_Bar_Sinister_(Underdog_Film)

 

                                                          Nova xxx  :smitten: