Scotteves: need advice for Cymbalta withdrawal

[Altostrata]

Please ask your compounding pharmacy what it puts into the capsules. It should be Cymbalta beads.

 

We have many people who are more or less in the same situation as yourself. Yours is not an unusual case.

 

Do your symptoms follow any daily pattern?  Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages. Use a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right.

[Scotteves]

I'm staying put at 22.5mg of duloxetine. I've been through 21 months of pure hell from benzo and cymbalta WD now. If It was just cymbalta that would be one thing but the benzos destroyed my nervous system. It's going to take forever, if ever, before it recovers again. Don't know how I'll live through much more of this. 

[Altostrata]

Recovery can be very slow and frustrating. An attitude that it's not going to work will not help it along. You might as well expect to recover and remove that attitude obstacle, at least.

 

I still need that info about your compounded drug, and your daily symptom pattern. There may be some small change we can make.

[Allreadygone]

3 hours ago, Scotteves said:

Finding it hard for anyone to relate to in these forums

 

So I've been going through hell for 21 months. Had the worst benzo WD and now Cymbalta WD on top of that which just made things much worse. My already fragile state from benzos just got destroyed. Heart palps 24/7, insane anxiety, panic attacks, rage, nausea etc.

 

When I go to YouTube or these messages it seems like everyone is all better after a few weeks or a couple months at most. Is there anyone thats been though hell for years after stopping the drug? It's beyond me that anyone can think going through 2 or 3 weeks of WD is really that bad.

 

@ScottevesI’m new here as well just wanted to tell u your not alone in your suffering.Im goin thru same stuff and a few more.We are in the right place Alto is top of the line as I have researched this for years no one comes close to the understanding and knowledge that she does

[Scotteves]

I only tapered from 30mg to 22.5mg. Surely you'd think I'd stabilize over a reasonable amount of time. Is there anyone that takes years to stabilize from a relatively small dose change? I don't care if I still have symptoms. I just want to get out of this acute stage. It's been 4.5 weeks of hell since my crash. The shakiness, agitation, heart palps are unbearable. 

 

I know I'm a special circumstance because of my already compromised nervous system from benzo WD.

[Gridley]

You've made a lot of dose changes, and the drop from 30mg to 20mg was over 30%.   4.5 weeks is not that long. It will likely take a good bit longer to stabilize.  No one can say how how long.   As Alto said, it is best to be patient and assume you are going to heal.  Thinking you won't heal is stressful to your central nervous system.

[Scotteves]

Is there any kind of average timeframe? I read on Google 4-6 weeks but I'd like to hear what people with experience think. I know with benzos that basically everyone heals with enough time. Does everyone heal from this? I can't believe that a drop in 7.5mg would be so horrific. I want to go back up so badly. 

[Gridley]

Unfortunately, there is no average time frame to stabilize.  Everyone is different.  You will see from the following link that time frames are all over the place, with many people talking about months.

 

After Reinstating or Updosing, How Long To Stabilize?

 

I tapered Imipramine too fast and updosed.  It took me about four months to stabilize.  You may be shorter or longer.  

 

Basically, everyone heals from this.

 

 

[Scotteves]

I'm getting windows more first thing in the morning and later at night. With benzo WD, this was generally a good sign.  Is this the pattern for this WD as well? 

 

I felt better the first two weeks when I crashed. I was getting full windows for days. Not I don't get any windows beyond a few hours. Heart palps are constant. Agitation and shakiness is constant but goes in varying degrees of it. 

[Scotteves]

Is constant heart pounding 24/7 for nearly 5 weeks common? It never lets up.

[Carmie]

Hi Scott, 

 

Thanks for your PM. It is best to put any questions here in your thread so others can also see them n comment. 

 

I see you’re really struggling and I’m really sorry. Everyone on here is really struggling, myself included. It doesn’t really matter what medication we are on, whatever SSRI, whatever antipsychotic, whatever benzo or antidepressant, they all affect our brains and we can get severe withdrawals from any of them.

 

Sometimes we may feel like we are the only ones going through this journey but we are not alone in this struggle. 

 

It surprises me that you said that in most of the stories you’ve read that the majority of people are better after a few weeks or months. Most people are struggling for a really long time. I’ve been tapering Seroquel for many years, so long that I can’t even remember how many, and I’ve got many more years to go. Don’t be discouraged if it takes a while and know that you really aren’t alone in the amount of time it takes to heal. We all get there in the end though, it just takes a lot of time and patience.

 

In the meantime I find distracting myself when going through waves the best thing to do. No matter how horrible I feel I make myself do something anyway to try and put the focus on something else so I stop ruminating. Maybe you have an interest or would like to do something you’re intersted in. It doesn’t matter if you feel numb and anhedonic or anxious, do it anyway. Distract! Distract! Distract! is my motto. 

 

Take care, sending hugs🤗

 

 

 

 

[Scotteves]

Hi Carmie,

 

Thank you. That was a really sweet post. Does it make any difference if you just tapered down a bit or if you hopped off? I went from 30mg to 22.5mg and I feel like I'm struggling for my life after 5 and a half weeks since my last taper. I did have a 2 day window last week but now back in a hellish wave. I'm also just tired after 21 months, I've had enough of this. I kick myself every day for tapering the cymbalta when i was finally starting to feel better from the benzos. So stupid. I've decided to not taper anymore. 

[Carmie]

6 minutes ago, Scotteves said:

Hi Carmie,

 

Thank you. That was a really sweet post. Does it make any difference if you just tapered down a bit or if you hopped off? I went from 30mg to 22.5mg and I feel like I'm struggling for my life after 5 and a half weeks since my last taper. I did have a 2 day window last week but now back in a hellish wave. I'm also just tired after 21 months, I've had enough of this. I kick myself every day for tapering the cymbalta when i was finally starting to feel better from the benzos. So stupid. I've decided to not taper anymore. 

 

Hi again Scott, 

 

Going from 30mg to 22.5mg is more than ten percent. We should NEVER taper more than that a month. I see you originally went from 30mg to 20mg, that was way too big a drop, that is 30%. Your drop was not small, it was actually triple the amount that one should taper, and in my case that would have been six times the amount. I can only taper around 5% or so at a time.

 

Dont get disheartened, it might take you many months to stabilise but you will eventually. There are times in the past where I dropped a little too quickly or didn’t hold long enough and it took three months or more. I did a formula change recently and I haven’t stabilised yet and it’s been about two and a half months or so. I’m a bit better than I was in the beginning though. I won’t be changing anything until I’m back to withdrawal normal, some kind of baseline again. 

 

What you need need to do is not put a calendar on when you will stabilise because none of us know. We just have to keep distracting ourselves.

 

We can still get bad withdrawals even when we taper small amounts, that being said though, what you tapered was very large even though you thought it was small.

 

As regards jumping off at the end, do not jump off until you have tapered to a really tiny amount. I won’t be tapering off until I’m down to 0.something. I’m going to be doing the brassmonkey slide in the future n it will take me another ten years or so to get off 7.5mg as I can only do it by four or five percent at a time. I’ll probably do some tweaking here n there though.

 

Check out the brassmonkey slide at the top of the page in the tapering section. If you can tolerate ten percent drops it won’t take you as long as it takes me. Better safe than sorry.

 

Take care💚

 

 

 

 

[ChessieCat]

3 hours ago, Scotteves said:

I did have a 2 day window last week

 

That is a good sign.

[Scotteves]

That wasn't in one month. It was over 3 months almost. That's how long it took before the crash happened. Is it common to have 24/7 heart pounding? It just never lets up. Also have nausea, dizziness, derealization, and extreme anxiety but that's lessened a bit this week.

 

I was also in benzo WD which was lessening before I started this taper. Double whammy of nervous system hell.

[Scotteves]

Does the heart pounding and nausea ever let up? I had heart pounding many times in benzo WD but it would only last a few days at a time. This heart stuff is never ending. 6 weeks now 24/7, even in my windows. 

[WiggleIt]

On 10/18/2018 at 9:49 AM, Scotteves said:

@ChessieCat I know you're not a doctor but what would you do in my case? I tapered slowly from 30 to 20. Went back up to 22.5 last week, felt better for a few days and now back in hell. 

 

Should I stay where I am? Go up a little more to 25? You obviously know more about SSRI's than I do. What do you think? Keep in mind that I'm also going through terrible benzo WD. I wouldn't have reacted this way had my CNS not been so fragile from benzos. 

 

Also is it common to have severe anxiety/rage, nausea and heart palpitations?

Hello Scotteves,

I'm not a tapering expert because I did not benefit from a taper.  My doctors really messed me up before I found this forum, so I was already cold-turkeyed by the time I signed up here.  I'm sorry I can't help you with that portion of your questions, BUT I can give you some hope about the symptoms you're experiencing, because I have been there and survived.  My struggle has not been short.

It is common to have anxiety, rage, nausea, and heart palpitations.  I had ALL of that to a very severe degree.  I was in hospital emergency rooms several times a month having my vital signs checked because I couldn't breathe right and felt constantly like I was having heart attacks.  But I'm telling you that I eventually got better from those symptoms, and I'm hopeful that you will, too.  In my case, I was ripped too quickly off of a benzo and an antidepressant at the same time!  So I was put in a double cold-turkey, and I survived.  It's been a long road, but I survived, and you will, too.

And yes, I felt severe rage.  Rage so profound that I don't even like to remember it.  But that faded, too, and my moods eventually became normal again.

I'm happy to encourage you and assure you that these symptoms can and do get better.  And if other members here can help you figure out tapering and stabilizing, then you'll have a good support crew around you online.  I would not have survived without online support groups, I'm tellin' ya.

Stick around.  Give it a chance here.    

[WiggleIt]

Oh, and by the way, it drove me NUTS when I first got here that everyone kept asking me my medication history and to put details in my signature.  I was like, "WHY CAN'T YOU PEOPLE UNDERSTAND THAT I'M DYING AND WHO CARES ABOUT MY STUPID SIGNATURE?  HELP ME!!!"  So I get it that these details seem trivial when we are in the thick of suffering, but the details really do help the admins to flesh out what might be going with newcomers.  Plus, I just couldn't figure out the flipping site for a while   

 

[Scotteves]

Lol i can't figure it out either and have low patience and mental capacity to use my brain right now. How long did it take you to stabilize and feel better after your cold turkey? I cold turkeyed benzos and that was no joke. The problem with this taper is that I had already gone through 20 months of hell beforehand. It's so daunting to think I might still have severe symptoms for months or years more. I quit my taper (still on 22.5mg) 6 weeks ago and really don't feel any better. My anxiety has gone down a bit but that was replaced with nausea.  

[WiggleIt]

I had tiny improvements before I stabilized, but I think real stability started around the two-year mark, honestly.  I definitely had windows before then, but 2-3 years off was way better than the 1-2 year mark.

It does seem daunting when you look at the road ahead, so my advice is don't look at the road ahead.  Concentrate on right now and what you can do today to help yourself have a manageable day.  Keep yourself in the moment of healing, and try not to get distracted by the path of healing, if that makes sense.

[gardenlady]

Scotteves, I'm in a similar position to you.  I tapered a benzo and jumped on 1/11/18.  Three months later, I resumed my Cymbalta taper.  I had cut from 60 mg to 48 mg in May 2017, but had to hold while I completed my benzo taper.  In April 2018, I resumed the Cymbalta taper and cut 10% a month till I got to 25 mg and then crashed.  The taper was grueling and I never did stabilize even while holding at 48 mg for a year.  I've felt poisoned ever since taking Cymbalta so don't think I will ever stabilize.  I've been at 25 mg for a couple of weeks and am non-functional.  The black depression, negativity and chronic fatigue have rendered me housebound.  My personality has disintegrated so that I'm unable to relate to others.  My friends and family are gone and I'm isolated as I have no husband or children.

 

All this to say that I empathize with you and am going through a similar hell, although mine is more mental than physical.  I do wonder if at age 66 I'll be able to complete the taper and recover.  Drs. Shipko and Healy say that some people can't get off ADs or don't heal if they do and that's scary.  I guess only time will tell. 

 

It sounds like you did a reasonable taper going from 30 mg to 20 mg over 2.5 months, but your symptoms indicate that even that was too fast, unfortunately.  I think it takes years for some of us to get to 0 mg.  I read about people tapering over a year or 18 months and am jealous.....I wish I could go that fast.  Must be nice. 

[Scotteves]

Gardenlady. How long have you been in withdrawal syndrome for now? Do you think that perhaps you didn't stabilize because of the benzo taper? It's a double whammy of hell on your nervous system. I don't think you'll stabilize until you're done your taper of cymbalta. I stopped tapering at 22.5mg. Going to stay there for as long as I have to. It's never a good idea to taper off both.

[Gridley]

28 minutes ago, gardenlady said:

Drs. Shipko and Healy say that some people can't get off ADs or don't heal if they do and that's scary.  I guess only time will tell. 

 

 

Gardenlady, 

 

I recall reading a post by Alto saying that Shipko sees the worst of the worst, accounting for his pessimistic view.  When I first read his views, I was stunned.  I choose to take a more optimistic view.  I am 70 and, as you can see from my signature, I have a distance still to go.  It is discouraging sometimes.  But that's where I am, and I am determined to stay the course.  I know it is very hard.  I am not naturally an optimistic  person (quite the opposite) but in the case of my tapering  I am choosing the attitude that I will heal.  

[Scotteves]

I think basically everyone heals with enough time. I spoke to someone who was on the highest dose for 13 years, quit cold turkey and his withdrawal lasted 2 years. In my case, my nervous system was already in a chaotic state from benzo WD but I only tapered cymbalta at a reasonable pace from 30mg to 22.5. Hoping I'll stabilize soon but I get that a more realistic timeframe will be a few months. 

[gardenlady]

Gridley, Thanks for your encouraging post.  It's good to hear that I'm not the only older person here trying to get off this stuff.  And thanks for sharing that you aren't a naturally optimistic person.  Neither am I, but I sure would like to be. 

 

Scotteves, I've been a mess ever since a psychiatrist switched me from Lexapro to Cymbalta, prescribed 2 mg of Ativan and 10 mg of Ambien.  That was Sept 1, 2016.  I immediately regretted taking so many poisons because I felt awful from the onset of all of them.  So, I started an Ativan taper 1 month later.  My history is in my signature.  Bottom line is that I haven't felt stable since that doctor put me on all that garbage even tho I'm off the benzo and Ambien.  I felt awful taking the poison and also while tapering it.  I wonder if I'll ever be well again.  It's been over 2 years now and I'm still a mess and have lost so much.  I merely exist day to day with no life and no relationships.  

[Scotteves]

Gardenlady. It takes longer to recover when you've been polydrugged and some of the rules are different for benzos and cymbalta. 

 

The most important thing for healing is to stay away from alcohol at all cost, as it works on your gaba receptors in the same way as benzos. Otherwise, supplements, meals high in carbs, sugar, certain sleep patterns, lifting weights ... anything that affects your nervous system can set you back or put you in a wave. It's a careful fame we have to play in WD. 

[Scotteves]

Gardenlady. It takes longer to recover when you've been polydrugged and some of the rules are different for benzos and cymbalta. 

 

The most important thing for healing is to stay away from alcohol at all cost, as it works on your gaba receptors in the same way as benzos. Otherwise, supplements, meals high in carbs, sugar, certain sleep patterns, lifting weights ... anything that affects your nervous system can set you back or put you in a wave. It's a careful fame we have to play in WD. 

 

Btw how do I see your history? I can't figure out how this forum works!

[Scotteves]

Did anyone else experience heart pounding 24/7? I can hear it and feel it all the time. Been 6 weeks and it doesn't let up one bit. 

[gardenlady]

Scotteves, I can see people's signatures only when I'm using my laptop....not when using my iPhone.  Not sure why....perhaps someone else can tell us how to view signatures when using a phone. 

[WiggleIt]

17 hours ago, Scotteves said:

Did anyone else experience heart pounding 24/7? I can hear it and feel it all the time. Been 6 weeks and it doesn't let up one bit. 

Yes, I did and mine was so bad that I'd call emergency medical services several times a month and would end up in the hospital emergency department hooked up to a heart monitor getting tested.  Everything always came back 100% normal, but that didn't make the experience less real or less terrifying.

I don't think it's unreasonable to get stuff tested to make sure things are okay, and please know that the heart pounding doesn't happen to me anymore. 

[gardenlady]

Scotteves, Have you tried taking 20 mg of propranolol a couple of times a day?  It might help.  I had a lot of heart pounding and rapid heartbeat in benzo withdrawal and that seemed to help some.

[Scotteves]

Did anyone start feeling worse as time went on? I'm getting insane waves at 7 weeks since my taper crash. I feel absolutely terrible with the heart palps, dizziness, nausea, blurred vision, brain fog and dry itchy skin. 

[Altostrata]

When did you go back to 22.5mg? How has your symptom pattern changed since?

 

What time of day do you take Cymbalta? Do you feel better or worse after you take it? 

 

Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages. Use a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right.

[Scotteves]

I went back to 22.5mg first week of October. The first 4 weeks, I had extreme rage and severe anxiety but had nice days long windows mixed in. The last 3 weeks, the mental symptoms aren't as bad but the physical symptoms are terrible. Blurred vision, nausea, heart pounding loudly 24/7, dizziness, drunk feeling, cog fog, DR/DP, dry itchy burning skin, sinus issues.  

 

I take it around noon. It seems to have no affect on my symptoms. I always feel terrible from mid morning to early evening and sometimes I'll get windows later at night. 

[Scotteves]

I was starting to feel slightly better a couple of weeks ago but then I missed a dose and it threw off my schedule. Feeling absolutely terrible. What would happen if I slowly went back up on my dose? I'd be happy to never come off this medication, as long as it makes me feel better in the near future. I've been suffering for 22 months from benzo and ssri withdrawal. I need relief now or I'm going to die. I can't go on like this. 

[ChessieCat]

37 minutes ago, Scotteves said:

I was starting to feel slightly better a couple of weeks ago but then I missed a dose and it threw off my schedule. Feeling absolutely terrible.

 

That is not unusual.  It may take another week or so before things improve.

 

You may also be stressed by the Christmas season and this is adding to the worsening, so it may not be all to do with missed dose.

 

I suggest you keep daily symptom notes so that you can be more objective about your symptoms.  Some members find it helpful to rate them.  Sometimes the improvement may be subtle and because we are feeling awful we don't notice that there has actually been an improvement.

 

There are printable and computer versions of Glenmullen's symptom list here (and also a blank one to fill in your own) with a key to rating symptoms included.   Dr Joseph Glenmullen's Withdrawal Symptoms