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

[[Sa...]]

CuzKK

 

I was like you, searching for long term people.  After two months here, I don’t think length of time of benzo use decides your withdrawal or symptoms. My opinion. 

 

I have also searched for a long time use post.  After 12 years of doc prescribed Xanax I quit 11 weeks ago.  My 5 weeks of horrible, brutal and painful withdrawal are a nightmare from hell.  My 5 weeks since have been just as horrible in a different way ... I didn’t know what a benzo was and thought I’d be healed by now! 

I had not seen these posts, maybe I will read a few each day. 

 

Thank you.

[[MT...]]

Hey SS and Cuz.

 

I think it's nice to be able to connect with others who were long term users, particularly to hear that it can get better. There's something random about wd with some short term users getting slammed and some long termers having an easier time but after 4 plus years here I'd say a trend is that it seems to be somewhat harder for long term users. The good news, however, is that with time, your body and brain can, and will, heal. I was polydrugged, took benzos for over 20 years, and had pre-existing health problems but even I got better. Hang in there.

 

MT

[[ni...]]

 

 

>>  why not cross back over to Klingon and taper that instead?<<

 

Klingon?      I'd rather meet a Klingon than this!  Uh, seriously go back on the clon?  I imagine I could but all this for nothing???  OMG.  Ya think?

 

R u doing a DLMT?<<

 

aargh.

 

OMG, guys this made me laugh so hard.  :laugh:

 

This gave me a good start to my morning. Thanks!!

I am a long term user (approx 20 years) and am still in a wave of recovery symptoms. I only list the worst, but have many more that I try to mostly to ignore.

[[Gr...]]

Hey Cuzkk & SS and MTfan,

 

I was on benzos for 27 years.  I took four years to taper off and I did it very slowly.  I am already noticing some improvements, and I've now been off for 5 months. 

 

For me, cognitive impairment was a big side effect, that I didn't realize was happening and was caused by the benzos.  I wouldn't say my brain is back, by any stretch of the imagination, but I do think it is improving and it did, even as I tapered down. 

 

At this point, I am suspect that benzos were the cause of many problems that I haven't even pinpointed yet.

[[Sa...]]

MTfan and Green,  I’m just finding replies to posts.

 

I’m hoping long term use does not drag out wd sxs.  As I am in early month four and my patience is wearing thin.  10+ years and was told by three PCPs that 1-3 mgs a day was a low dose of Xanax and would not hurt me wrong!!  No withdrawals wrong!

I trusted all of them no more.

I’m hating these WD sxs, like everyone else.  I hope I heal before I die.  I like seeing quick healing stories!

 

We are all different and will heal when our bodies are ready. 

[[MT...]]

I find it helpful to remind myself that my body and mind are doing their absolute best and thank them for it. I started doing this because I was so ANGRY at them and felt betrayed by their struggle so this practice helped me befriend my body/mind and have more self-compassion. It's still a struggle but not quite as hard as it was. My battle is mostly with CFS at this point and insomnia, not wd, so don't be alarmed.

[[Si...]]

I find it helpful to remind myself that my body and mind are doing their absolute best and thank them for it. I started doing this because I was so ANGRY at them and felt betrayed by their struggle so this practice helped me befriend my body/mind and have more self-compassion.

What an interesting idea.  I'm going to try this.  Thanks. 

-Jeff

[[NY...]]

I find it helpful to remind myself that my body and mind are doing their absolute best and thank them for it. I started doing this because I was so ANGRY at them and felt betrayed by their struggle so this practice helped me befriend my body/mind and have more self-compassion. It's still a struggle but not quite as hard as it was. My battle is mostly with CFS at this point and insomnia, not wd, so don't be alarmed.

 

Great perspective, MT.  Thank you 

[[Cu...]]

I find it helpful to remind myself that my body and mind are doing their absolute best and thank them for it. I started doing this because I was so ANGRY at them and felt betrayed by their struggle so this practice helped me befriend my body/mind and have more self-compassion. It's still a struggle but not quite as hard as it was. My battle is mostly with CFS at this point and insomnia, not wd, so don't be alarmed.

 

 

Good words indeed, MT.  It made me remember I'd heard a story on the news years ago & it did remain in this benzo-addled brain!  An elderly woman who'd celebrated her, I'm guessing, maybe 90th birthday had been making it a habit over decades to thank her body parts for getting her through each day!  ~ 

MT, you've also given other very helpful communications on this thread. I do appreciate that. 

 

I believe I am seeing several patterns while reading threads.  It would seem that ativan gives more physical w/d sxs, while klonipin more cognitive.  Not sure yet where valium & xanax fall, although my thoughts are that xanax is more like ativan, but even faster in/faster out (4 hours v. ativan 6). ~ I"m putting in simple, non-medical terms.  I've been online a long while today & tired now, w /eyes being tired as well.  ~ There does seem to be talk about length of time for w/d sxs based on how long you've taken a benzo.  That's not only here, but elsewhere on internet/youtube, too.  I can't/won't allow myself to entertain any thoughts on that, b/c I was on quite a high daily dose & for a very long time (in signature line); that would not be helpful.  I've found much of this process to be "letting go" & "turning off" a lot of things!

 

Even bearing that in mind, SaraSue, it's concerning when I read that you sound eager for quick healing.  I think the term quick is counterproductive for this healing process.  For myself, I'm a month & 1/2 out.  And, I am viewing this as Just a month & 1/2 out.  My hope is that, perhaps, by around 7-8 months I'll be doing somewhat better than now, but even that will be partial; it will more likely be another 1 - 1/4 years from then, as 2 years from last dose seems to be the typical length of time.  And, yes, that's awful, considering I'm already in this from tolerance w/d & active taper for about 2 1/4 years already.  But, again, "letting go".  If it's quicker...great!  I've learned patience, at least with this.  I hope you do have quick healing.  I'm not saying this to discourage you.  I have no idea what types of research on this you've done, other than visiting here.  I did voluminous amounts of research & reading for months while @ start of my active taper.  I'd read posts here, too, but didn't join until I was about 6-7 months along in my taper.  In that time period, I read one book & some helpful blogs.  I was better prepared when I came here, for what I'd be reading.  Once I did begin reading posts where members were posting while in high anxiety moments & very distressed w/that &/or physically, I know myself & that would've alarmed me further.  So, I do, at least, know myself & that worked out well. 

 

On a good note ~  I was out yesterday - for 2 hours!!  (I'm figuring this doesn't sound as ridiculous here as it would anywhere else!)  This was monumental for me.  I've been disabled/dysfunctional for approximately 1-1/2 years now.  I'm not gong into all of that, in detail.  It's on some other thread(s), if anyone's that interested.  I did feel sensory overload afterwards, but felt so good for engaging w/others & being outside in the fresh air.  My good feelings continued into today & for the first time in that time period, when I spoke w/2 friends over phone today, I encouraged visits from each of them!  I haven't done so at all & actively discouraged anyone from visiting me.  So, I felt a glimmer that maybe I am beginning to heal...at least emotionally.  Physically, not yet, I'm in awful pain.  But, between both these things, I felt happiness today!   Now, must close eyes/rest a little.

 

Thanks for listening.    We'll get though to better days...

[[MT...]]

Good for you, Cuz, getting out for two hours. That's a big deal. Shows that you're determined and that your body is doing its very best to help you recover.

[[Tr...]]

I am long term user as well, 23 years.  Uggg. 6 months 2 1/2 weeks out and I’m still suffering terribly. More so then I was 2 months ago. I feel like I damaged my cns entirely by being long term user but I’ve been told we will heal. ^__^. Here’s to Hoping..

[[MT...]]

Trailhead,

 

I know that feeling and often struggled with that belief that with the zillions of drugs I took for as long as I did permanently damaged me. It was so hard to believe in the fairy magic that healing could happen. But it's real. Recovery eventually unfolds in its own sweet time. Sometimes there are marks left but it's nothing like what life is like in the midst of wd where you are. At 6 months I barely functioned and was totally convinced I was brain damaged. I still can get panicked about how my brain is functioning but I have to remind myself that any cognitive issues I have are part of CFS, broken sleep (mostly from the CFS), and getting older. But I know I can put a magnifying glass on every brain hiccup and see it as a sign that something is TERRIBLY wrong. When I allow my perspective to widen, I notice other people also forget names, have difficulty recalling what they read, etc. Minds love to catastrophize and the mind/brain on wd is even more prone to this. Sometimes I try to have a giggle at how ridiculous the story is that my mind is coming up with such as: "I'm too tired to live" and "No one really cares about me and I'm no good at anything." It's just mind trash talk and a signal that I need to be kinder to myself and reframe it: "I feel tired and need to rest" and "I feel lonely right now so I think I'll call/text my friend" (and remember something nice that was said to me. I actually have a file on my computer and will write down affirmations I receive from others there or in my journal for those times when I can't think of a single redeeming quality. In my case this isn't all wd, this is how I've always been, but I want to change it.

[[Ba...]]

How do you know CFS and was it prior to benzos or during or withdrawal/?

 

Trailhead,

 

I know that feeling and often struggled with that belief that with the zillions of drugs I took for as long as I did permanently damaged me. It was so hard to believe in the fairy magic that healing could happen. But it's real. Recovery eventually unfolds in its own sweet time. Sometimes there are marks left but it's nothing like what life is like in the midst of wd where you are. At 6 months I barely functioned and was totally convinced I was brain damaged. I still can get panicked about how my brain is functioning but I have to remind myself that any cognitive issues I have are part of CFS, broken sleep (mostly from the CFS), and getting older. But I know I can put a magnifying glass on every brain hiccup and see it as a sign that something is TERRIBLY wrong. When I allow my perspective to widen, I notice other people also forget names, have difficulty recalling what they read, etc. Minds love to catastrophize and the mind/brain on wd is even more prone to this. Sometimes I try to have a giggle at how ridiculous the story is that my mind is coming up with such as: "I'm too tired to live" and "No one really cares about me and I'm no good at anything." It's just mind trash talk and a signal that I need to be kinder to myself and reframe it: "I feel tired and need to rest" and "I feel lonely right now so I think I'll call/text my friend" (and remember something nice that was said to me. I actually have a file on my computer and will write down affirmations I receive from others there or in my journal for those times when I can't think of a single redeeming quality. In my case this isn't all wd, this is how I've always been, but I want to change it.

[[MT...]]

I had CFS and insomnia prior to benzos and wd. I was placed on benzos as a treatment for them.

[[Ma...]]

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.

[[Si...]]

Marcus, I feel so sad for you.  You've endured so much at the hands of doctors who sound like absolute morons.  I started Xanax at age 23, and that was only .25mg at bedtime.  I hope someone on this group can relate more closely to your story and offer some support.  I cling tightly to the words of MTfan, who assures us that we all do heal eventually.  But first, we need to get you tapered off.  Peace to you.  -Jeff

[[Ma...]]

Marcus, I feel so sad for you.  You've endured so much at the hands of doctors who sound like absolute morons.  I started Xanax at age 23, and that was only .25mg at bedtime.  I hope someone on this group can relate more closely to your story and offer some support.  I cling tightly to the words of MTfan, who assures us that we all do heal eventually.  But first, we need to get you tapered off.  Peace to you.  -Jeff

 

Thank you so much. I appreciate your kind words. Is MTfan an active poster in this thread?

[[Si...]]

Not really, but she did add some posts just recently that were inspiring.

[[MT...]]

Marcus,

 

What you're describing sounds maddening and terrifying. It's hard to know what the right thing to do is. You already feel like you're barely surviving so making any change leaves you feeling paralyzed with indecision. Like Simon said, the behavior of some of your doctors is grossly inappropriate. Have you exhausted your local resources or are there other psychiatrists you could call and ask if they'd help you taper? On the Mad in America website there's a listing for benzowise providers.

 

Your current psychiatrist sounds like a quack. I'm not sure what your relationship is with him/her but I think your instincts are dead on that you need to get away. The 70 y/o might be manageable in a crunch while you look for someone more reasonable.

 

The choices I see is to resign yourself to this being as good as it gets (the one you seem to be leaning towards) or accept that you need to go through an long, challenging time of tapering to get off the benzos. It seems you would be a good candidate to take SSRIs or a tricyclic antidepressant to help some with the anxiety while doing so. Or hydroxyzine? Usually I recommend no meds but you're in an extreme situation. I used them for around the first 2 years after jumping. I was taking over 10 meds daily, not counting as needed meds, when I started all of this. Now I just take HRT but it was a long, ugly process that involved my PCP and 7 specialists because I seemed to be dying. Now I'm back to better than the previous decades in almost every way but I still have Chronic Fatigue Syndrome.

 

I didn't take meds as a teen but there have been others on here who have and recovered. Neuroplasticity can help your brain recover. The larger issue is that all of those years in your teens you may not have been learning all of the coping strategies you needed. Your mind gets used to working in certain ways, develops patterns. I assume you're working on that with your psychologist.

 

I know this all feels hopeless and desperate. Despite that, I believe in your capacity to make the best decision for you and to come to a better place in life. You're stronger than you think.

[[Gr...]]

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. 

[[He...]]

Hi,

 

 

I am almost a year out at the end of this month and I am still experiencing what I think is PAWS....been to doctor and immunologist.... nothing there! Metallic taste in mouth, urinary problems, hair loss.... no one educated me on the prolonged withdrawal symptoms...do you guys experience any of this? And is this NORMAL or am I actually physically sick?(Dr did bloodwork and nothing really there)HELP! Just need some support and answers! 

[[Ba...]]

Sorry you still ahve symptoms when off the crud.

 

I am tapering and yes, lots of hair loss.

Don't know what urinary probs you mean???

I have mouth probs but not metallic taste (yet)...

[[no...]]

*bump*

[[Ma...]]

Hi Her Majesty,  I haven't had those symptoms, I am still tapering, but I have read all around the different threads here and they all seem to be pretty common unfortunately.  I am sure if you go to the search section under your avatar, and look them up, you will find quite a bit of information on all.

Hope they ease off soon, Mary 💜💜💜💜

[[Gr...]]

Hi everyone.  I'm 11 months off now and I was on klonopin for 27 years.  I am doing so much better in so many ways.  Physically I have way less pain on a daily basis.  I still have issues with neck and shoulder tension but it isn't constant and seems to be getting better.  I do NOT sleep every night, but about every third night I get a good night's sleep, or at least decent enough, and that is great when it happens.  I am currently struggling with making decisions or maybe it's just cog fog.  I feel like I can't think things through properly.  I never feel confident in my choices.  Also, I can't read or watch a video with headphones or concentrate on anything when someone else in the room is talking or making some noise.  That is very frustrating.  I have no ability to tune things out.