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Feeling Destroyed - Please Help With Tapering


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[Ne...]

Hi all,

I feel completely unsupported and alone in my experience, and am hoping to gain guidance, reassurance and a path forward from this forum.  I had a major anxiety / depressive episode happen in August 2023 at which point I started taking 10mg Lexapro (which I had been taking on and off for nearly 20 years); only this time, for whatever reason, the medication was not helping to curb my physical symptoms and I noticed I was having some issues with my cognition and weight (concentration, focus, I was having much more trouble doing work, I had lost 10lbs etc).  I tried to increase the dose, felt terrible brain fog / static, and eventually weaned off of it in September.  At this point, I was pretty much taking a leave of absence from work as I could barely get emails done, I was losing weight uncontrollably / having gastro issues and not sleeping well.  I was then prescribed zoloft with a .25-.5mg klonopin bridge in October.  I didn't respond well to either drug, took the klonopin maybe a handful of times which helped with sleep, but gave me a chest depression, and eventually weaned off of zoloft before starting remeron with a .25-.5mg Ativan bridge in November.  I couldn't tolerate the remeron for more than a few weeks, but did feel some relief from the Ativan and began to take that, as needed, in November.  I found myself taking 0.5mg Ativan quite a few times through December to help me get out the door / through social situations even though I still felt fairly brain dead and non-functional in other respects (I was having trouble taking care of myself, getting food for myself, feeling extremely weak/spacey, shaking on and off, still couldn't work, moved very slowly).  In January, I tried to taper off of the Ativan with 0.25-0.5 Klonopin, but was reminded of how badly I felt on Klonopin during the day, started to experience really scary cognitive processing issues and just felt like I was on the verge of death.  In February, I went away to an inpatient wellness / therapy program where I was put on a daily regiment of 0.5 ativan 3x / day (1.5mg total) + 5-10mg propranolol + low doses of Lexapro gradually lifted up to 15mg (as the doctor there felt I should try to get up to the most therapeutic dose because history showed that I had been responsive to Lexapro) + 100mg trazadone.  The entire month, I felt super unstable, dizzy/disoriented, mentally blank / blocked, exhausted (I was only sleeping 2-3 hours even with trazadone), had trouble finding my words, couldn't retain or recall info, etc.   I literally felt (and still kind of feel) like I have brain damage.  The only difference was that I had meals covered and help getting from place to place.  I returned home in March not much improved and immediately wanted to make adjustments to this medication regiment.  I stopped the trazadone and am desperately trying to taper off all of this Ativan. 

I'm still only sleeping maybe 3-4 hours a night, but have accepted this (for now) and am just taking a melatonin / magnesium supplement at night. My new psychiatrist tried to have me move back to klonopin to help me sleep, which I was doing for a few nights, but I couldn't tolerate it again during the day (made me incredibly lethargic / sleepy).  I got my Ativan dosage down to 1mg and cut another 0.5mg out the last few nights, but have been feeling absolutely horrible (keep in mind, I haven't been feeling great on the Ativan either).  I feel shakes / agitation every single day in bed from early morning hours on, my head is dizzy / disoriented / spacey from the moment I stand up, my vision seems to be getting worse, I have aches / burning sensations in my neck, I'm still having trouble taking care of myself and preparing / stomaching food (when I eat, it all runs through me), and feel like I can't leave my apartment or move my body too much / function in this state.  I've been taking the 15mg Lexapro and .5mg Ativan with food in the morning and find myself feeling a tiny bit functional maybe 2 hours after that, which lasts for a few hours before I feel a kind of "withdrawal"...back to feeling spacey / dizzy, etc.

I am expected to go up to 20mg of Lexapro now (can't even tell if Lexapro is helping all that much) and am at a loss of what to do about the Ativan.  Did I taper down too fast?  Have all of these months on benzos completely ruined my brain?  I'm only 5 feet tall and fluctuate between 90-95lbs...I don't know if I'm just extra sensitive to the medications because I'm so small.  Really hoping someone here can advise on proper tapering at this point and offer any support / suggestions on how to get through all of this.  Every day is a total nightmare. :(

 

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[Re...]

Hello @[Ne...], Welcome to BenzoBuddies!

I am happy you found us! 

I approved your post to get your account going, and I am certain our Buddies will reply to your post very soon. 

I hope I will be able to reply to your message, too, but unfortunately I need to go this time. 

I encourage you to read the resources on this site and use the "Search" function to learn others experiences. 

Wonderful and helpful community here. 

Take very good care, 

RR 

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[Re...]

Hello @[Ne...], I am terribly sorry you are experiencing such discomfort.

As I can recall there have been members who have had quite similar experiences when starting an antidepressant and a benzodiazepine. 

Have you taken any other psychiatric medications (antidepressants, benzos) in the past? 

You have been prescribed quite a lot of different medications in a short time, and also had fast switches of these. There seems to be a limit of the rapid changes our bodies can tolerate.

May I ask how functional you are at this point? Can you fulfill your daily duties/work? 

In my opinion it would be good to stabilise where you at, than when you feel ready for it, start to taper the Ativan after a while. Good news is that this gets better and our nervous system does calm down, but it takes a while. It might not be question of days or weeks,  contrary to the popular belief. 

Information about benzodiazepines is available on this website. A very important publication we use is the Ashton Manual, work of the late professor Heather Ashton. Information about safe apering is available here. 

The general recommend taper method is reducing your previous dose with 5-10% every two to three weeks (so called exponential tapering - corr.) after longer use, but given the few months, you might do this faster. It would be wise not to reduce these medications simultaneously. 

I don't have experience when it comes to antidepressants (I should have as I dropped one, too), BenzoBuddies is a community with a focus on benzodiazepines. There is a website called survivingantidepressants.org, it might be of help to you. 

Recovery is very much possible from these medications, we have a lot of members who are out there living life, doing very well. Please see the Success Stories on this website. 

I suggest you try to get informed about tapering and the effects of the medications first and you will see your next step a bit better. I am sure our Buddies will share their experiences and thoughts very soon. 

RR

 

Edited by [Re...]
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[Ne...]

Hi Reuben,

I have not taken any other psychiatric medications in the past beyond what I mentioned in my previous post and still feel quite dysfunctional.  My ability to work is very limited, I hardly sleep, can't gain weight and am having trouble feeling ok enough to get out and about.  My whole life is suffering because of this.

It's been incredibly difficult to stabilize...I really haven't found the winning combination in all of these months.  I feel really helpless because the psychiatrists I've worked with as of late (as well as people close to me) act like it's crazy for me to think the benzos could be affecting me this way at such low doses.  They seem to think it's no issue that I've been on them for the months that I have been. I don't know what the proper tapering should be for me because I hardly feel relief being on them now and certainly don't want to increase the dose.

Have you seen people in the community mention doctors or medical professionals that they've worked with that have helped them get to the other side? (Particularly those that can practice in the NY area?)  I don't feel support or compassion at all from my current medical team.

Thanks,

NaH

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You certainly have had a lot of chemicals put into you. I hope you find a way to live life without them. 

Try to learn how to calm your mind naturally.

When you stop the chemicals your digestion will stop trying to detox and straighten out. And you'll stop rebounding the symptoms you are suffering from.

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[Ne...]

The problem is I don't even have conscious anxious thoughts anymore...my body is sort of stuck in a state of anxiety nearly all day, everyday, from the moment I wake up.  I also can't just quit the meds I'm on now, cold turkey. :( 

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[Re...]

@[Ne...]

Isn't it possible your nervous system is sensitized in general because of the rapid start of therapy, then cessation, and repeat (kindling). This sensitivity seems to form in case of antidepressants and benzos, too. 

Also, I wonder if you heard about kindling and hypersensitivity. Here is a link. This site refers to a link I will paste next from the BIC website here

I think these are definitely worth reading. 

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[kn...]

I've taken benzos and tried nearly all the rest of the meds you've been prescribed over the course of the last 30 years.  Some of them didn't do much at all, others seemed quite helpful.  The big difference, though is what @[Re...] described.  This 'scrambled' med path, coupled with the ups and downs of dosages can produce a pattern of indecision where you really don't know what to do.  I dropped to low, too fast in my diazepam taper (started at 60 almost three years ago, now down to 4).  I actually managed to get down to 2 by August of last year, but had to up dose in early Feb. of 24.  Unfortunately, I changed my mind every few days, first to 2.5, then back to 2, then up to 3, yada, yada.  I found myself, horribly out of it, much as the kindling stuff that was described above.  I really don't have any answers for you other than to try to stabilize on one or two meds, stay on site and follow up on the suggested research.  You'll need to become your own advocate to figure this out, and work on getting your life back.  You'll find many here trying to do the same.  I'm one of them.  Best wishes in all.   

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[Ne...]
Posted (edited)

I had never heard of kindling, but this definitely makes sense.  I absolutely am experiencing a hypersensitized nervous system.  Wish I knew how to make it calm down more quickly. :(

I guess at this point, I'd be curious to get opinions on what I should do.  I know I can't just quit the medications I'm on now and need to try to stabilize.    I don't necessarily think I should quit the Lexapro just yet (and I know I can't do this alongside tapering benzos)...I've been back on it for just about 6 weeks.  Maybe I stay on the 15mg dose and don't increase?  I think it's making me feel wired / awake, which is obviously not helping my sleep, but might be improving my mood a tad.  Has anyone found ways to ease insomnia that don't involve taking benzos?

As for the Ativan, I was taking 0.25-0.5mg semi-regularly, but not daily, from November - January, and then in February, it was bumped up to 1.5mg / day for nearly 4 weeks.  I started trying to cut down the evening dose to 0.25mg at the end of February, so that it was more like 1.25mg / day, then cut the daily dose to 1mg in early March and then 2 weeks later (this week), tried to cut the other 0.5mg.  I was feeling awful before the cuts, but now, I have very distinct symptoms when the Ativan wears off (morning and evening) and don't know if I should increase dosage to a certain amount or try to hold and ride this out.  Based on how long I've been taking benzos (approx. 6 months, daily for 2 months), how long would be the suggested timeframe to taper off? My symptoms include:

-agitation / shakes

-heavy chest

-head pressure / sensation / disorientiation

-nerve pain / achiness in body / burning

-insomnia (ongoing)

-temperature dysregulation (insanely hot, then cold, etc.)

-slightly blurred vision

Any guidance or suggestions would be incredibly appreciated, thank you!!

Edited by [Ne...]
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[Ne...]

@[Re...]  I'm a little confused as to how to reduce doses of lorazepam by 5-10% with the pills being as small as they are.  I'm also not sure if it's a good idea to reinstate higher doses at this point or ride out where I'm at...

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[je...]

Hi @[Ne...]

gosh, you’ve been through so much. I’m so sorry. Like the others have said it seems like the doctors just threw a lot of meds at you because they don’t know how to make you feel better. In order to help you can you please list all your meds with approximate dates of when you started and stopped it please? It is very difficult to extract this information from paragraphs of written text. 

If we have it in condensed version it is so much easier to look at it in one glance and see your history and be able to assist you. If you look at this person’s history it will give you a basic idea of what we’re looking for https://benzobuddies.org/profile/334455-[je...]/?tab=field_core_pfield_34

If I have this information I’ll know better which questions to ask as to guide you forward. 

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[Ne...]
Posted (edited)

Thank you @[je...]!  Here goes.  It's sickening to me to write this whole list out.  I can't believe how many different medications I tried over the last 8 months.  Horrified and scared that I'll never recover from this.

Keep in mind, I had no idea that I had to wean off of the benzos...I was pretty much taking them off and on, thinking this was "as needed" dosing, when in some cases, I was taking them for weeks on end. :(

Lexapro

2005 - 2009 - 10mg / 1x day

2009 - 2021 - 10mg / 1x day (There were definitely days I skipped / forgot to take dose and had no issues.)

2021 - 2022 - Weaned off 10mg Lexapro with intention of preparing for pregnancy, no issues

Aug 2023 - Reinstated 10mg Lexapro due to extreme stress / depression and perhaps this is when hypersensitivity started.  I felt little relief from my usual dose, just increased chest pressure, heart palpitations, anxiety, increased bowel movements, unintentional weight loss, etc.

Sept 2023 - Increased the dose to 15mg and then went back down to 10mg after 2 weeks due to increased brain fog, spaciness and shakes.  Weaned off the 10mg of Lexapro by the end of the month.  Started to notice issues with my cognition...difficulty doing work, moving quickly, making decisions, unable to access / recall things I've learned in the past...and continued to have frequent bowel movements and more weight loss

February 17 2024 - February 21 2024 - Inpatient retreat center reinstated Lexapro at 2.5mg dose, 1x daily, based on "historical data" even though my trial in August and September didn't work.

February 22 2024 - February 26 2024 - Center increased the Lexapro dose to 5mg / 1x day

February 26 2024 - March 1 2024 - Center increased the Lexapro dose to 10mg / 1x day

March 2 2024 - NOW - Taking Lexapro dose of 15mg / 1x day

 

Wellbutrin + Klonopin

Oct 4 2023 - Started Wellbutrin / Bupropion XL 150 and experienced heightened anxiety, shaking, chest pressure, palpitations etc.

Oct 4 2023 - Prescribed .25mg klonopin to take as needed.  Took almost daily from Oct 4 - 10.

Oct 10 2023 - Stopped Wellbutrin

Sertraline + Klonopin

Oct 12 2023 -  - Started 50mg Sertraline with a bridge of .25mg klonopin to take in the AM and 0.5mg klonopin to take in the evening.  0.5mg made me very groggy and lethargic during the day, so I mostly stuck with .25mg of klonopin 2x/day from Oct 12 2023 - Oct 20 2023.

Oct 23 2023 - Took .5mg of klonopin at night to help with sleep 

Oct 24 2023 - Nov 3 2023 - Took .25mg klonopin in the morning and back to .25mg klonopin in the evening along with an increased dose of Sertraline to 75mg. 

Nov 4 2023 - Nov 12 2023 - Increased dose of Sertraline to 100mg and couldn't handle it.  Felt incredibly spaced out, pounding heart, nervousness, etc. 

Nov 4 2023 - Nov 12 2023 - Took .25mg klonopin 1x or 2x a day, as needed.  Not every single day throughout this time.

Nov 13 2023 - Cut Sertraline back to 75mg due to discomfort.

Nov 14 2023 - Doctor instructed me to stop taking sertraline and klonopin, and to start mirtazapine and lorazepam as needed, but I wasn't ready to switch.

Nov 15 2023 - Took .25mg klonopin

Nov 15 2023 - Dec 5 2023 - Reduced dose of Sertraline from 50mg to 25mg and then stopped.

Ativan

Nov 17 2023 - Took 0.5mg Ativan for the first time

Nov 19 2023 - Nov 20 2023 - Took 0.25mg Ativan 1x per day

Nov 24 2023 - Took 0.5mg Ativan

Nov 26 2023 - Nov 27 2023 - Took 0.5mg Ativan 1x per day

Nov 29 2023 - Nov 30 2023 - Took 0.5mg Ativan 1x per day

Dec 2 2023 - Dec 14 2023 - Took 0.25mg or 0.5mg Ativan 1x per day

Dec 18 2023 - Took 0.5mg of Ativan 

Dec 20 2023 - Took 0.25mg of Ativan

Dec 22 2023 - Dec 30 2023 - Took 0.5mg of Ativan 1x day

Jan 5 2024 - Took 0.25mg of Ativan

Jan 7 2024 - Took 0.5mg of Ativan

Jan 8 2024 - Jan 11 2024 - Took 0.25mg of Ativan 1x day

Jan 14 2024 - Took 0.5mg of Ativan

Jan 15 2024 - Took 0.25mg of Ativan

Jan 19 2024 - Took 0.5mg of Ativan

Feb 8 2024 - March 10 2024 - Went to an inpatient retreat center and was put on a daily regimen of 0.5mg of Ativan 3x / day (morning, afternoon, evening).  Began cutting down to 1.25mg x day from Feb 28 2024 - March 10 2024.

March 10 2024 - March 19 2024 (except for March 13-14 2024) - Cut down to 1mg x day and started feeling withdrawal symptoms (body agitation, dizziness / disorientation, loopy head, burning sensations on skin).  

March 20 2024 - March 25 2024 - Cut down to 0.5mg x day and withdrawal has gotten worse (body agitation, muscle aches / nerve pain throughout body, burning / pins and needles sensations, instability, temperature dysregulation)

March 26 2024 - Brought Ativan back up to 0.75mg - 1mg to try to stabilize before slow tapering.

Calm Aid (Lavender pills)

Dec 6 2023 - Dec 24 2023 - Took 1x or 2x / day to help with anxiety symptoms as a natural supplement, but combined with benzos and mirtazapine, I couldn't tell if it was helpful.  (This was probably my body in hypersensitive / kindling mode and me thinking I just had crippling anxiety.)

Mirtazapine

Dec 6 2023 - Dec 11 2023 - Started 15mg of mirtazapine 1x day and couldn't handle it. 

Dec 12 2023 - Dec 25 2023 - Reduced dose to 7.5mg of mirtazapine 1x day to wean off

Dec 25 2023 - Dec 30 2023 - Reduced dose to 3.75mg of mirtazapine 1x day and stopped.

Klonopin

Jan 2 2024 - Jan 5 2024 - Took 0.25mg klonopin 1x a night for sleep 

Jan 12 2024 - Jan 25 2024 - Took tiny chips of klonopin (approx 0.25mg or less) 1x a night to try to help with sleep (this was also supposed to be a cross-taper plan from Ativan, but I was not responding well to the klonopin.  It started to make me feel spacey, brain-dead, lethargic, and cognitively impaired the following mornings).

Jan 30 2024 - Feb 3 2024 - Took 0.5mg klonopin for sleep 1x nightly (my husband insisted I do this again for a few nights to get sleep)

March 13 2024 - March 14 2024 - New psychiatrist tried to have me switch to 1x 0.5mg klonopin for sleep and 1x 0.25mg - 0.5mg per day from Ativan and I couldn't handle it.  

March 18 2024 - March 19 2024 - Took 0.5mg klonopin 1x nightly for sleep

Clonodine

Jan 20 2024 - Jan 26 2024 - Prescribed 0.05mg Clonodine by a new psychiatrist and took 1x a night for hypervigilence.  Did not respond well to it and stopped taking.

Metropolol

Jan 26 2024 - Prescribed 0.25mg metropolol by my GP to take, as needed, for anxiety.  Tried taking on this date and did not really feel much relief.

Jan 27 2024 - Feb 6 2024 - Took 0.25mg metropolol sporadically through these dates.

Feb 8 2024 - Feb 14 2024 - Went to an inpatient retreat center and was put on a daily regiment of 0.25mg metropolol 1x day (did not really do anything)

Propranolol

Feb 15 2024 - March 6 2024 - Inpatient retreat center switched me to this beta-blocker and put me on a regiment of 5-10mg 1x day (although it didn't really do anything)

March 6 2024 - March 15 2024 - Spoke with new psychiatrist about taking this, as needed, and was told I could stop taking without weaning off.

Trazodone

Feb 3 2024 - Prescribed 50mg Trazadone by my GP to help with sleep.  Tried for the first time on this date and didn't get great sleep.

Feb 8 2024 - Feb 12 2024 - Went to an inpatient retreat center and was put on an evening regiment of 50mg Trazadone 1x night for sleep (which did not work)

Feb 13 2024 - March 1 2024 - Center increased the evening regiment to 75mg 1x night for sleep (which was only helping me sleep 2-3 hours / night)

March 1 2024 - March 6 2024 - Increased evening regiment to 100mg 1x night for sleep (which was still only helping me sleep 2-4 hours at max)

March 8 2024 - I was told I could stop the Trazadone without weaning off and decided to do so because it wasn't really working that well.

 

 

Edited by [Ne...]
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[je...]

Thanks I appreciate it and I know you tried your best. Unfortunately it’s still very difficult for me to extrapolate the information. Did you have a look at the link I provided? https://benzobuddies.org/profile/334455-[je...]/?tab=field_core_pfield_34

For example the only information I need for Propranolol is this: 

15 Feb 24 - 15 March 5-10mg

I don’t need words to explain what happened. It makes it difficult to extract the doses and dates. Please only list doses and dates. Sorry, I don’t want to be a PITA but we are all in withdrawal and the brain fog makes it difficult to make sense of so much information. I’m going away for a couple of days and might not be able to check in with you immediately.

 

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

Propranolol

Feb 15 2024 - March 6 2024 - Inpatient retreat center switched me to this beta-blocker and put me on a regiment of 5-10mg 1x day (although it didn't really do anything)

March 6 2024 - March 15 2024 - Spoke with new psychiatrist about taking this, as needed, and was told I could stop taking without weaning off.

 

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