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What symptoms are you still dealing with?


[Na...]

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I used to do this survey every so often on the old board.

What was your drug, how long since you finished your taper or cold turkey, and what symptoms are you still dealing with today?

Some of you have a list of dozens of symptoms and I absolutely don't doubt that you have them. However, my brain just isn't capable of processing that many data points - so I'll ask you to give me no more than your top five worst symptoms.  If you have less than five, then just give me what ya got.

I started asking this question years ago every so often, trying to determine if I could see some pattern between what drug someone was taking, or how long they had taken it, or how long it had been since they stopped and what remaining symptoms they had left.

However in all my years here, I don't think I was ever able to distinguish a clear pattern. Or even a not so clear pattern.

But, we're starting a new platform, we've got some new members, so it would probably be useful for people to get a feel for what everyone else is dealing with.

I'll start:

I took zolpidem, then temazepam, then zopiclone for a total of 18 years or so. I took it every night (because I always follow the doctors instructions carefully :( ) for insomnia caused by some chronic pain issues (bike wreck, surgery, damaged nerves, yada yada yada).

My final dose was July 2nd, 2015. We are now a bit over 8 years later.

I'm left with really two main issues - significant anxiety that is almost PTSD like (various triggers will send my anxiety/stress to 11 as quick as you can snap your fingers) and what feels like painfully spasmed muscles at the bottom of my rib cage. Ironically one can be bad and the other not so bad so I don't feel like the anxiety is causing the muscle spasms.

I had a lot more symptoms back years ago after I finished my taper, but these are the two I'm left with.

So what are your main issues you're left with?

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14 months ago I CT'd klonopin after around 12 years. Main issues are erratic sleep with restless leg and anxiety on and off during the day. Will say I feel much better overall, but I hope to have no symptoms eventually. 

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57 minutes ago, [[g...] said:

14 months ago I CT'd klonopin after around 12 years. Main issues are erratic sleep with restless leg and anxiety on and off during the day. Will say I feel much better overall, but I hope to have no symptoms eventually. 

I think you'll get there grace. 14 months and you're down to these symptoms. I think your chances are very good.

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4 hours ago, [[N...] said:

What was your drug, how long since you finished your taper or cold turkey, and what symptoms are you still dealing with today?

My drug was clonazepam, I am ten years out from a taper this coming October 26, I continue to experience episodes of anxiety/panic, head pressure and vice neck.

Nathan, I do not believe there are any "patterns" to distinguish amongst us. There are stories with common elements. There are individual bodies sorting out the confusions of internal communications.

I believe our community is one living, breathing benzo fractal.

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Great topic thank you Nathan.  Many thanks for moderating🙏🌿🙏.

20 months ago I finished a 4-year taper (it included one long hold, and one reinstatement for going too quickly) off two benzos taken simultaneously.... oxazepam for sleep (20 years used). And Clonazepam (for 10 years).  My last benzo dose was November 15th, 2021.

I'm still having extreme insomnia swings, tinnitus, akathesia bouts, muscle tension.   The no sleep thing is killing me lately.... in one average week I may go with zero sleep for 2-3  nights....... maybe two hours for three more nights, and one broken up 7-hour sleep when I'm utterly exhausted.

I'm at some kind of breaking point.  I realize I need help... but because I live remote, it would be with the same kind, but non-savvy doctors that subscribed benzos to me in the first place.  

I do want to claim some progress.   I no longer have the vertigo and dizziness which was my second worst symptom until 1/2 a year post taper.  As well.... my stamina to handle people and conversations and situations has improved.  So my brain processing has improved......  but 20 months and little sleep!  Something's gotta give....

 

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Nathan and others,

I'm 27 months off Sonata, 3 years off of Lunesta and about 7 years off of Xanax.  I took occasional Ativan and Valium as well but never consistently.  I've definitely seen some improvements.  My current worst symptoms are 1)  body burning, buzzing and aching, 2)  stuffy ears paired with loud tinnitus, 3) fatigue (not constantly), 4) muscle stiffness 5) bloated belly from time to time.  

I was on the Z drugs for over 15 years and the Xanax for about 7 years.  I now take none medicines or alcohol.  

Thanks for this topic.

Helen

 

 

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Great topic!  

In 2006, I took Ativan for insomnia off and on for about two months.  CT'd,  reinstated and did 18 month taper.   Did not have a difficult taper or recovery.

In 2020, I took Ambien for insomnia off and on for about two months.  CT'd in March 2020.   Also, stopped drinking alcohol in March 2020.   

It has been 41 months.   My main symptoms are anxiety, broken sleep, g.i. issues, pain in extremities.

I am currently in a long wave.   

 

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I am in my 41st month post taper from the use of Valium for one year, as prescribed by my GP for bad headaches brought on by a concussion after hitting my head on a night table.  From the very beginning I have had very good windows, and as of now my worst remaining symptoms are the burning brain type of headache and benzo flu!   However, my windows are getting longer and even with a lot of stress recently (husband in ER for a heart issue on the same day our washing machine malfunctioned and caused major flooding in our home), I held my own pretty well.  Plus, I recently fell twice, once last Saturday while dog sitting for a friend, then this past Monday while at home.  My diet has not been great, but in spite of the physical and mental stress I have weathered recently, my wave of yesterday and today is mainly a mild benzo flu.  So, all in all I can handle all manner of stress better and am hoping that this bodes well for a recovery soon to be.

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I just passed my 12 year anniversary from a C/T off Valium. I was taking it as needed for insomnia, probably caused by changing hormones. Big regret there, I wished I'd taken almost anything else. In about 9 months I was in tolerance but didn't know if for some time.

My remaining top 5 issues:

Muscle, tendon, ligament pain. Not sure which it is but shoulders, hips knees, and sometimes ankles.

Insomnia (much better than it once was)

Headaches

Throat discomfort (Docs can't see a problem but my throat has bugged me since w/d on and off)

Frequent urination. This is so much improved I almost left it off but it does crop up sometimes.

I know 12 years sounds scary and I'm sure I'd be living a different life if I'd never gone down this road but in general, life is pretty good. I do have bad days and painful days and days when I'm more anxious than I should be but I'm usually able to get out and enjoy my life. The other thing is, I actually AM a lot older than when this all started. So some things can be attributed to age, things that might not be happening if I were a younger person. 

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I finished my taper from Valium in 2014 . My still top 5 symptoms are , tremors , fatigue, gastrointestinal issues , anxiety, and body pain. I was misdiagnosed and I didn’t have any of these symptoms when I first started taking the benzo . It’s now been 9 years and there has been several symptoms that stopped , but several that have stayed and have gotten worse , maybe due to getting older .

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Please bare with me as I write this post.

I don't come on here as much as I did because my cognitive issues..not even sure if I'm using the right word.."cognitive ". ..but I just can't remember definitions of words to describe my symptoms.

I took 1mg of xanax for 13 yrs for anxiety and insomnia. I went into tolerance wd and had no idea what was going on. Was going back and fourth to docs and emergency department for weeks...with a diagnosis of anxiety...lol..really? On one visit to Ed a psych doc told me he thought  my symptoms were due to xanax wd. Long story short I came home and Google xanax wd. I started a taper and had no idea what I was doing. 

Tapered for around 3 weeks and off. I suffered greatly for 2 yrs and then symptoms gradually lifted. Got on with my life. Fast forward 6 yrs. My mom and sister both got a diagnosis of terminal cancer. Sis breast cancer ..mom lung cancer. I really felt I couldn't deal with this without support and an antidepressant. 

Anyway..my doc prescribed ativan. Please don't judge me..I've already done that. I took 50 ativan 1mg in a 3 yr period. I thought if I didn't take them everyday I would be fine. Off ativan since 2013.

Only meds I take are thyroid and Tylenol

 

This time around is soooo much worse. So protracted!!! I feel as though I will never heal.

Neuro nerve pain is my worst symptom. Muscle contractions. Pelvic floor pain Anxiety and weakness in legs.

I'm so sorry  for the long post.

Many hugs to you all.

 

 

 

 

 

 

 

 

 

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I took 1.5mg a day Xanax for 2 months. I was forced to cold turkey by the doc. I am now 21 months off and I still deal deal with insomnia, usually get around 4 broken hours of sleep a day, weird indescribable brain sensations, extremely tight muscles, gastro problems, and loud tinnitus. I have many other mild symptoms still but those are the 5 major ones.

I had really hoped that with my short usage I wouldn’t still be here but, I guess that wasn’t in the plans.

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Took zopiclone for 12 years not every night zero problems on it. Forced to CT over 4 years ago. Got mild intrusive thoughts. Was then put on AD’s to supposedly help the intrusive thoughts sent them spiralling out of control. So for me was the the AD’s not zopiclone caused problem. Have had lot emotional stress with toxic family having therapy for now, Seems everyone reacts differently to things. Do think CT is a recipe for disaster personally.

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Iv been on klon 20 months. This is my second taper. Did one 10 years ago no problem. This time not as lucky. Unfortunately I have more then 5 symptoms. Mine change from hour to hour and change in intensity. Worst are 1. Body feels like big raw nerve. Hurts physically and mentally and my ears and head will hiss. 2. Insomnia. Last night felt like i was looking through a kaleidoscope. I coukd also feel my brain moving around like a soup. 3. Doom and anxiety. 4. Dp/dr 5. Benzo flu

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I finally found the sight, I been long hauler for 10 years plus, its seems every year I get new symptom's, currently tinnitus,

nerve pain hands and feet, muscle pain legs, hamstrings especially, tremors if i stand in line or stand still for a few minutes.

head pressure, inner nervousness, akathisia, what has gotten better, my mental state is better place, , I can exercise, but sometimes i overdo it, and i will pay for it, it seems my CNS his still pretty fragile to stress. to the body.

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2 hours ago, [[p...] said:

I can exercise, but sometimes i overdo it, and i will pay for it, it seems my CNS his still pretty fragile to stress. to the body.

Yeah, that seems to be a characteristic of BIND - a lot of us are left in a fragile state so that if we deviate from out routine too much, new foods, supplements, medications, exercise, etc. we can be thrown into a setback. That seems to diminish as time goes on, but it can linger for a long time even in people that consider themselves mostly recovered.

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Hi All,

Thanks for checking in, Nathan.

In my case, I was on clonazepam (.5 mg x 2/day) for a total of 6.5 years for pain and sleep issues (related to the pain). Lorazepam (.5 mg, sublingual, as needed) was added in around the 4-year mark, since I was having panic attacks all the time, and the clonazepam clearly wasn't working anymore. Had my doctor understood that that was tolerance, perhaps he would have explained that to me and I/he would have made different choices at that time. Eventually, it all became clear. I did a crossover to diazepam, and it took about 8 months to taper completely. My last dose was May 24, 2013.

I took Cymbalta, an SNRI, but only for a very short time since I became dizzy (i.e. floaty-boat disequilibrium) and began having terrible diarrhea soon after starting it. I had to figure out how to get off it properly, since it was in capsule form. I was later prescribed Prozac, once it was determined that I was having a withdrawal reaction to the SNRI. I had to taper the Prozac as well, and my last dose was May 9, 2014.

I had a huge range of symptoms, but the worst two symptoms were -- and still are -- floaty-boaty dizziness/disequilibrium and loud hissing (tinnitus) in my left ear. I have intense pain in my foot from before, and it has only worsened as a result of the dizziness. It is impossible to walk due to the pain and dizziness, I barely sleep, and I'm crying all the time. At this point, I have very little quality of life left.

 

Edited by [La...]
I wanted to change a word.
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Hi everyone!

I'm 9yrs out this month after 30yrs on clonazepam and a month and a half taper after new doctor wouldn't prescribe it anymore and he had no idea what he was doing. 

First 3 yrs was unreal, a hour of sleep a night and still able to function, but many times really felt like I didn't know where I was. Depersonalization/derealization-besides insomnia-was my biggest symptom-along with many different muscle issues I can't even begin to describe, Myoclonus (muscle twitching) being the most profound...feeling like 100's of twitches at a time, occasionally-still to this day.

Off and on waves, first 6 months of this year were really good with no anxiety/mental issues at all. I still had my "normal" muscle twitches happening, but overall, it was a great 6 months. July 15, I entered a pretty extensive/strong wave-anxiety, minor depression, fear, muscle/skeletal issues. Do not know what the trigger was...I did get overheated a couple times in early July, besides that, can't pinpoint the cause. 

Anyway, I feel for all of you greatly, keep up the good fight!

 

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2 hours ago, [[c...] said:

Hi everyone!

I'm 9yrs out this month after 30yrs on clonazepam and a month and a half taper after new doctor wouldn't prescribe it anymore and he had no idea what he was doing. 

First 3 yrs was unreal, a hour of sleep a night and still able to function, but many times really felt like I didn't know where I was. Depersonalization/derealization-besides insomnia-was my biggest symptom-along with many different muscle issues I can't even begin to describe, Myoclonus (muscle twitching) being the most profound...feeling like 100's of twitches at a time, occasionally-still to this day.

Off and on waves, first 6 months of this year were really good with no anxiety/mental issues at all. I still had my "normal" muscle twitches happening, but overall, it was a great 6 months. July 15, I entered a pretty extensive/strong wave-anxiety, minor depression, fear, muscle/skeletal issues. Do not know what the trigger was...I did get overheated a couple times in early July, besides that, can't pinpoint the cause. 

Anyway, I feel for all of you greatly, keep up the good fight!

Did it take you 3 years to start sleeping again? Do you sleep normally now?

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Benzo prescribed for sleep.  Stupidly trusted my doctor.  I had no idea it was a psycho-tropic drug.  Barely six months of use from start to taper - 85 pills.  It's been 8 years now...June 1, 2015.  My setbacks are as if I am withdrawing all over again and so severe.  I am currently in my 6th setback and entering the 7th month of hellish physical and mental torture.  Severe constant anxiety, can't feel joy or pleasure, constant dread and depression everyday, crying jags, severe weakness/lethargy and tremors in arms and legs, super sensitive to smells and have to force feed (just the thought of food makes me nauseous). Tinnitus is constant and super loud. I currently take no meds not even aspirin and I eat all organic, gluten free, caffeine free, sugar free. No reprieve or healing along the way until the very end.  Last setback was 18 months and I slowly started to heal the last month.

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Clonazapam for 12-15 years.

Took up to 4MG/ day 

been off since July 2018. 
 

current symptoms:

anxiety and panic (worse than what necessitated the benzo use) 

shallow breathing and feeling constricted when I try to take a deep breath. 
occasional insomnia

intrustive and ruminating thoughts 

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Clonazepam for 11 years. Jumped off nearly 10 year ago. 

Symptoms that began during WD and are still present:

- Sensitivities to foods, odors, chemicals, physical activity, visual stimuli, stress, viruses etc.

- Visual tracking issue and other visual issues.

- Liver test numbers have been higher ever since. 

- Chronic fatigue which comes and goes

- The constant need to lay down, which seems to have turned out to be Orthostatic Hypotention. 

- PVC's

Symtoms that have developed:

- Chronic migraine

- Timnitis in both ears (all the time)

- Reduced sweat production

- Chronic idiopathic urticaria

- Cholonergic Urticaria (heat allergy)

- Heart related issues SVT etc.

 

Fonz

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I was prescribed Xanax 0.5mg up to 3x/day for anxiety and panic attacks starting in August 2015 and CT'd in January 2018 from 0.5mg. I started going through acute for about 2 months, then I took rescue doses of Ativan sporadically as needed until March 2019. I've definitely healed since going through acute(I'm pretty sure I went through acute twice), but I'm still very sensitive to stress. My top 5 worst symptoms:

1. Tinnitus

2. Visual dp/dr

3. GI issues

4. Fatigue

5. Anxiety (worse than my pre-existing anxiety prior to starting the meds) and OCD

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Hello all,

 

Only took Ativan 1mg/day for about 5 weeks for sleep, followed by 3 weeks of tapering. Jumped 2.5 years ago.

What's left?

1. Intermittent tinnitus (few days on, few days off)

2. Extreme episodes of anxiety attacks, involving increasing pulse from 70 to 140-170, increased BP, palpitations, feeling faint, lightheaded, chest tightness, heart skips, heart jolts, etc (occurs at least once/week)

3. Brain sensations, like disequilibrium feeling or tinnitus going from one side to the other, or just feeling like there is some kind of activity inside the brain

4. Chest tremors/vibrations (mostly in the morning when waking up)

5. Broken sleep (most nights i wake up 4-6 times, but able to accumulate 6-8 hrs every night)

 

Still waiting for NO symptoms at all....

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