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Are there any long haulers here? I feel very alone, been on about 14 years...


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I’ve been on and off, then for the most part of 14 years I stopped for a year and then continued for three years stopped for another year every time I have had to reinstate because it gets so bad, this last time I was all the way down to 0.75mg and now I’m back at 2.5mg a day. I get extremely discouraged because I was feeling great and then all of a sudden I developed inappropriate sinus tachycardia as well as POTS syndrome, my heart rate was going over 220BPM. I didn’t taper fast at all and it all came out of no where... I’d like to get back down to at least 1MG. I’m just so scared to even try at this point... I’m on propranalol and corlanor for my heart... it helps but I still have adrenaline surges that scare the crap out of me... I really need to know I’m not the only one who’s been on for years and years ... I don’t even have a clue how I would restart this taper or if I’m ready to... I just need a little guidance
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I understand completely. I’ve been on some version of benzo for 40 years but I have successfully come off them several times with, eventually with no bad effects.  I restarted because of unmanaged anxiety, not the physical effects of the drug. It’s unfortunate that I restarted but I won’t look back  I take a lot of encouragement from this guys story, the original long termed.

Really, don’t give up and certainly don’t feel bad about having anxiety. I doubt any one in this forum would have chosen these drugs over finding some way to work on the anxiety.  This prescription epidemic has to stop and the lack of informed consent.

I think many of us forget why we started these drugs. We were feeling bad, and more than likely an uninformed prescriber thought they were helping. Keep going there are many of us out there and you are not alone.

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I am a long hauler. I was cold turkeyed  off of xanax about 20 years, at 10mg by my then psychiatrist who put me on it in the first place. I was utterly clueless.

 

Martie, I liked that video, will be checking out that site.

 

I was put back on xanax 6-7 years ago because of anxiety.(different doctor) I am again at a high dose. Trying to taper has been agony. I tapered it down to 6 mg 3 times in the past 6 years, but stupidly updosed back to 9mgs  1.5 years ago, and it has been the fight of my life to reduce. The sxs are extreme when I cut.

 

I just made a commitment to my therapist (not my prescriber) that I am going to hold a cut I made yesterday that was pretty awful for a week, and we will talk again. That I will tolerate whatever pain I get. 1 week.  At this point, I need someone to be accountable to, because I am not getting there on my own.

 

So no, your not alone.

 

Find the support group that deals with your current benzo. Also check out taper support to get some input on what you should do from here as far as tapering.Planning Your Withdrawal (Taper Plans)

 

Also, most people experience a lot of symptoms once they are off the medication, or at very low doses. It can be the worst part of the process. What you experienced is common.

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Hello. You can count me in. If you read my signature you can see how many times I went on and off the benzo. Every time there's a numer next to it in brackets. Little did I know I was severely kindling myself. Now tapering is agony and I really don't know if I'll have to stay on the valium. I can't get so symptomatic that I don't function so I'm very careful.
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Yes, I took for a total of 20 years.  From 2001-06, I got off them probably 5 times for about a month each time with very little problems.  Stupidly, I went back to them because life was a little easier on the benzos.  A few of those times I was put on Remeron and actually felt mentally clearer on Klonopin than Remeron.  Went 2006-19 uninterrupted.  Got off in 2019 and it was bad.  Reinstated 10 months later.  Back off again.
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I’m seeing a lot of people who’ve been on for 1 year and then held for 2 years, I’m not sure that fits me...
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Hi Cupcake88

 

I have been on clonaz (nocturnal epilepsy) for 24 years as directed.

Started my taper Feb21 after a seizure in June20 & change of meds.

Currently holding until i see a Psych to assist with anx/dep ptsd as directed by my Neuro.

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i'm a long-hauler at about 14 years of taking clonazepam. my goal isn't to eliminate the drug completely but rather to just reduce the dose which i've done but i'm having some quite unpleasant symptoms, although not disabling ones. eliminating the drug completely would have me relapse into a complete state of dysfunction which is where i was prior to being placed on klonopin in the first place. i don't demonize this class of medication at all, i feel that it has its place in medication, although i also realize that there are people here on very high doses or who have abused the medication in the past or don't have a severe underlying anxiety disorder or whatever the circumstances may be, so i'm here to support everyone as much as i hope everyone is here to support me.
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Yes, 15 years at 2.5 mgs of xanax. I tapered 2 mgs in 2020 and am now holding at .5. I have several underlying anxiety disorders.
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Hi, I was on Xanax for over 20 years and  jumped one month ago. I was very motivated to get off this drug (it was causing major problems for me) so I never updosed or held for longer than two weeks, and it took almost a year to taper. I'm so happy now. It can be done, and it's wonderful to be free.

Sending positive vibes your way.

-L

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Hi, ive been on klonopin for 15 years before starting taper. I had a few attempts myself. I did stop cold turkey for 2 pregnancies for a child born in 2007 and 2010. Went in Jan 2006. I don’t know how I stopped? Ignorance was bliss? I was pregnant just stopped? I had some crappy life events in 2010, 2011,2012,2013. Fairly big traumas. Anyway if those years doses got increased by Drs. I asked to go off starting maybe 5 years ago I was always told my anxiety was to acute. I feel like a long hauler like I’ll never get off I’m down to less than mg of klonopin but the withdrawals are from hell. I have to come on Benzo buddies to even find out if the withdrawals are “normal” I can’t figure out if there is eve n a time line when they might ever stop. It’s so yucky I feel your pain don’t be hard in yourself. Wish I could take the advice)  if you ever need to chat let me know
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Hi, ive been on klonopin for 15 years before starting taper. I had a few attempts myself. I did stop cold turkey for 2 pregnancies for a child born in 2007 and 2010. Went in Jan 2006. I don’t know how I stopped? Ignorance was bliss? I was pregnant just stopped? I had some crappy life events in 2010, 2011,2012,2013. Fairly big traumas. Anyway if those years doses got increased by Drs. I asked to go off starting maybe 5 years ago I was always told my anxiety was to acute. I feel like a long hauler like I’ll never get off I’m down to less than mg of klonopin but the withdrawals are from hell. I have to come on Benzo buddies to even find out if the withdrawals are “normal” I can’t figure out if there is eve n a time line when they might ever stop. It’s so yucky I feel your pain don’t be hard in yourself. Wish I could take the advice)  if you ever need to chat let me know

 

Going off and back on is what's made it so hard for me now to taper. Impossible perhaps? Time will tell. I'm reducing at snail's pace. I spend more time holding than cutting.

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Fly,

Thanks for the positive note. I am also tapering off Xanax and hoping to do it in a few months. I only say that because I have tolerated a huge drop right out of the gate but I know it gets harder the lower your cuts go. I am only 5.5 weeks into my taper and due to horrible paradoxical symptoms, I cut a lot right out of the gate. I am currently using a liquid taper and am down to 1.19 mg day from 4 mg but I can already tell my cuts will have to be smaller and further apart as I go forward based on symptoms.

 

Thank you again for sharing your mini success story. It is inspiring.

 

HM

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I understand completely. I’ve been on some version of benzo for 40 years but I have successfully come off them several times with, eventually with no bad effects.  I restarted because of unmanaged anxiety, not the physical effects of the drug. It’s unfortunate that I restarted but I won’t look back  I take a lot of encouragement from this guys story, the original long termed.

Really, don’t give up and certainly don’t feel bad about having anxiety. I doubt any one in this forum would have chosen these drugs over finding some way to work on the anxiety.  This prescription epidemic has to stop and the lack of informed consent.

I think many of us forget why we started these drugs. We were feeling bad, and more than likely an uninformed prescriber thought they were helping. Keep going there are many of us out there and you are not alone.

 

May I ask a question and I hope it doesn’t offend. When you stopped the drug and restarted them would you say your tolerance dropped? Like for example the drugs were effective again and relaxing in the beginning?

 

I ask because when I get off mine I’m not looking to be completely off forever. When I was young I was able to take a Xanax about once a month and it helped me tremendously. I’ve been on benzos now every day for 6-7 years and I fear my tolerance to these drugs won’t drop. Benzo is great to use as a crutch once and while but not long term. Found out the hard way

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I’ve been on and off, then for the most part of 14 years I stopped for a year and then continued for three years stopped for another year every time I have had to reinstate because it gets so bad, this last time I was all the way down to 0.75mg and now I’m back at 2.5mg a day. I get extremely discouraged because I was feeling great and then all of a sudden I developed inappropriate sinus tachycardia as well as POTS syndrome, my heart rate was going over 220BPM. I didn’t taper fast at all and it all came out of no where... I’d like to get back down to at least 1MG. I’m just so scared to even try at this point... I’m on propranalol and corlanor for my heart... it helps but I still have adrenaline surges that scare the crap out of me... I really need to know I’m not the only one who’s been on for years and years ... I don’t even have a clue how I would restart this taper or if I’m ready to... I just need a little guidance

 

 

 

Very much the same here off and on these meds for over 20 years and reinstated for exactly the same reason...ended up in the ER last time I tried to taper off with inappropriate sinus tachycardia and then it turned into POTS and I could hardly stand to use the bathroom! I'm been tapering extremely slow over the last 3 years and them made the mistake of updosing when my father became very ill and ever since then I'm been basically bedridden with extreme pain and POTS worse then ever

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  • 2 weeks later...

Hi everyone, I'm a long hauler and have learned the hard way that I've kindled and done some damage by CTs, a crossover to Valium and now this taper.  I didn't know it at the time, but I went way too fast for my body and ended up in severe acute wd (like another CT but worse) when I reached 4mg of valium.  Though that was building for the year prior, I just didn't get it that my body and mind were screaming to stop.  I was still really impaired from my 2018 detox and couldn't wrap my head around "how to listen to your body".  Well, since November's hard hit, I now know.  I've been on benzos for 27 years and was polydrugged for over two decades, as well.  So, I'm pretty sure my chemistry is rather fried at present.  Haven't been the same person since my bad crash.

 

Knowing what I know now, I wish I'd have held my reinstatement of K for a year at least.  I am non functional and wish I could tolerate valium better because I'd try a more significant updose.  At this point I'm thinking of adding K back in to see if I can get any stability because I've been waiting for over 6 months now, have dose two small updoses (.4mg then .5mg more) and still so severe.  I'm so lost and feel hopeless.  I don't care if it takes 10 years to get off, I just want some functionality back and to get out of this level of adrenaline, panic and mental chaos. 

 

 

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I have bipolar and have been hospitalized for it on a few occasions. Each time, I was CT off my Xanax with no horrible effects beyond insomnia which I still have. The first time in 2015, my Rx was .25 mg 2 X a day. I had an episode, ended up in the hospital and only realized they CT my Xanax much later. I had GAD and used Vistaril for 2 years until I got another Rx for .25 mg 2 X a day. That time my prescriber cut me off after about 6 months and I managed OK. I finally had a Dr. in April of 2020 that started me on 2 mg 2 X a day! He didn't hear me correctly when I asked for .25 mg and thought I said 2 mg. There's a big difference. I managed to work my way up to that dose. I was CT off my 4 mg a day dose in January 2021 for 2.5 weeks and had GAD plus anxiety. I had no idea it could be so bad. I didn't know about kindling or Ashton or anything for that matter. I knew they were addictive and there was WD but I thought you could get off in less than 60 days. I started back on my 4 mg a day when I got out of the hospital and, at the end of April 2021, I hit tolerance, was having bad interdose WD and was having paradoxical symptoms so I started tapering off and that was about 7 weeks ago. Even though I tolerated those CT's relatively well (I was loaded up with antipsychotics and mood stabilizers), I think it hurt my brain in the long run. I know I can't CT now or I'd be in a world of hurt. I am reducing at a relatively rapid rate as I don't know if I can keep my Rx. I'm stock piling pills just in case and I waste nothing with my liquid taper. I have mixed feelings about Xanax. It helped me when I needed help but then it turned on me. I have PTSD and panic disorder along with GAD and now I have to pray my brain heals enough to either go without meds altogether or still be able to use something like Vistaril and have it help a little. Vistaril use to help me a little bit but I doubt it would touch me right now. Also, Xanax used to help me sleep and now I have insomnia. My biggest symptom has always been insomnia. My doses now do nothing but damage control. I get no relaxing or sleep benefit from my Xanax anymore. I want off this crap because I realize how bad it is for your brain now but I worry about how I'll manage my underlying conditions (sleep and anxiety) as time goes on. Every day, I tell myself that my brain is healing and that I'll be OK. I do a lot of positive self-talk.

 

Can't wait to be off this crap.

 

HM

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Deadman walking you became bedridden due to an updose?

 

Yes I did. I can't even begin to understand what happened or why it happened...I was in a tough spot and trying to get some relief but it had the complete opposite effect on me. My POTS is worse the fatigue and brain fog is worse I guess maybe benzos are doing more harm than good at this point.

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hello cupcake..  im 53 and iv been on klonopin for over 25 years.  i also had crazy adrenlean surges making feel like i was having a stroke. but that happened while i was taking 2.mgs a day.  i new it was from the meds and had to stop.  i have tapered to to a bit over 1/8 of the pill  twicw a day from one whole pill twice a day.  even though im probally going slower than anyone on here, im still getting there, and pretty much without many sysptoms.  the racing heart is the one that bothers me the most.  i just deep breath or meditate for a few minutes.  sometimes i need to walk outside in the fresh air.  when i start having the racing heart , i know i have to hold my taper until i feel normal again.  it is fustrating and nerve racking but it can be done.  i hope to be finished by the beginning of the new year. good luck to you.  go slowly and listen to your body.  jill
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I'd be willing to bet,  most people have anxiety who are prescribed a benzo, I can't believe anyone could prescribe it for sleep troubles,  can't believe that although it is definitely true. Seems very careless to prescribe this kind of drug for a sleep issue. The very worst part of quitting, to me, is the heightened state in which your body can peak when you do not have the drug and you are panicking, but I read there is evidence that the brain never fully returns to its natural state, and so your stress response will never fully be the same no matter how long you're off I'd them.  I will always have them, but as of 14 days I still haven't taken any. I'm only posting because when I read of how bad anxiety gets and the BP. It just makes me feel so many emotions, I remember withdrawls in the past that were so bad I had no idea what was wrong,  I couldn't stop moving,  and my blood pressure was through the roof, went to the er, its like you can no longer control anything, can't even talk yourself down, your body jumps ship. Makes me sad, but I hope learning ways of coping and through therapy I can at least TRY to manage the pre panic, the stress, and all that leads to the time where I can't go back.
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You're in good company, as there seem to be so many of us long-haulers.  It's been at least 15 years for me on benzos.  I get adrenalin surges too, and it really limits what I can do.  I get PEM (post exertional malaise) from the surges.  I'd assumed the surges were part of chronic illness (myalgic encephalomyelitis), as it's a symptom of that too, along with PEM.
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