KateL: getting off Cymbalta, divorcing myself from psychiatry and the mental health system

[KateL]

Hello,

My name is Kate. I'm 52 years old. My first experience with the mental health system happened when I was 17. I was sent to a psychiatrist because I dropped out of high school due to mental problems. I have been in and out of treatment since then, more in than out. I've had several suicide attempts but none recent. My first diagnosis was depression, then it was treatment-resistant depression. At about age 42, after I didn't respond to ECT treatments for my treatment-resistant depression, I was diagnosed with borderline personality disorder. Since that diagnosis 10 years ago, I have had more and more treatment, including polypharmacy and DBT therapy. In the past 10 years, I went from being employed full-time to being on SSDI and considered permanently disabled.  In the last 10 years, my physical and mental health have gone very downhill and I've become very isolated.  In the last 10 years I've had dozens of Psych hospitalizations, but none in the past 2 years.

 

I was attempting to get back into DBT treatment because they now have a trauma component to that therapy. I had gone through this IOP DBT program 5 times after getting a borderline diagnosis. The program did not have a trauma component back then. I was in contact with the clinician who runs that program, sort of in negotiations to return to the program so that I could do the DBT again and get the trauma component this time. At this point, a good deal of the trauma I have is treatment induced.

 

So I have the original trauma from childhood that was never addressed in any of my treatment, plus all the trauma of being a patient in the mental health system for the past 35 years. I was told by the clinicians in the DBT program that in order to return to the program I would need to have an outside therapist. I started seeing an outside therapist. She wound up violating my HIPAA rights. She spoke to the women who work in the front office of the practice about my "abuse history"... She basically told them what my diagnosis means to her and that it's why I appear to get so upset at times.

 

I let the therapist know that she had violated my HIPAA rights and I didn't appreciate it. She wouldn't acknowledge the violation or apologize. No one in the practice, including the psychiatrist who I'd been seeing for a year-and-a-half and who'd been prescribing the cymbalta, would acknowledge the HIPAA violation.

 

That was the beginning of the end for me. I got tired of being constantly disrespected by people i had gone to for help. I ended treatment with the psychiatrist and the therapist, and I let the DBT clinicians know that I would not be returning to the program. And as an act of rebellion I went off the cymbalta cold turkey. That was about a month ago.

 

At the moment, I believe I'm going to make it through this chapter in my life. I've been through painful chapters before and I've survived, obviously. I do feel quite scared and very alone. The fact that I rejected the system of help that we have in place for people with emotional problems doesn't mean that I don't need help. It just means I don't need that kind of help, which I have found to be very abusive at times.

Edited December 29, 2018 by JanCarol
white space

[JanCarol]

Hi Kate!  Welcome!

I'm so sorry to hear of the abuse you have suffered at the hands of psychiatry (and psychology, too, it seems).  Here we call it "diag-nonsense" thanks to our member @nz11 who coined the term.  You've come to the right place!  

 

I've done a little edit of your intro to put in white space.  There are a lot of people in withdrawal here, so anytime we can make things easier to read with white space, we like that.

First order of business, we'd like to have your drugging history in your signature. 

Account Settings – Create or Edit a signature. - to actually update your signature

Please Put Your Drug History Into your Signature - to see what a signature should look like

Putting your history in your signature means that wherever you post in the forum, mods can make a quick check and see if your symptoms can be explained by your drug history.  Often, they can!

 

Obviously the most important part is the Cymbalta - how much were you on when you CT'd?  Do you have the exact date of your liberation from the drug?
Also the next more important part is changes that were made to your drugging in the last year.

You are in the perfect window for a tiny reinstatement, and it will be far less than you were on.  This will involve opening your capsules and counting beads (are you on generic or brand name?)

 

You've already made the first adjustment, so we might be able to reinstate half of your dose or less.

 

Here are some other helpful topics:
Tips for tapering off Cymbalta

Why taper by 10% of my dosage?

Windows and Waves

Counting beads in a capsule versus weighing

I also found this video (please note, he recommends tapering weekly, which does not consider the 3 weeks it takes for neurotransmitters to adjust. That's why we recommend monthly tapering)

 

So - WELCOME!

 

You should be able to read and post anywhere now.

 

I hope you see the sun today!

(ps, that's not my cat in my avatar, but it looks very like my current cat, Piper!)

 

P.P.S. - this place is HUGE!  It's best to start on the links you are given, and gradually work your way around from there.

Edited December 29, 2018 by JanCarol

[JanCarol]

Another suggestion for reading is to search through the introductions and find others who are tapering Cymbalta - or who you feel attracted to by their name or story - and "visit" their thread and make new friends.

 

We're all in a similar boat here - different drugs (similar effects), different diag-nonsense - but remarkably, the symptoms are very very similar.

[KateL]

Fight the Power

 

Edited December 29, 2018 by ChessieCat
removed quote

[KateL]

Not sure how to use this website or why the quote was removed.

I'm not capable of doing a 35-year drug history. From the time I was 17 to now aged 52 I've been drugged.

Too weak to get out of bed all day today. I think I give up.

[KateL]

I have no support in real life.

 

I think it will be impossible for me to get through this  .

 

The damage is tremendous.

[bubble]

The thing is we can't stop a drug cold turkey even if we were on it for months.

 

You will need to reinstated. We can suggest an amount for reinstatement once you provide us with more details.

 

You don't have to do all 35 years.saying various psychotropic drugs for 35 years is enough. We only need more detail on the last 2 years and in particular what dose you were taking and when you cold turkeyed.

 

You can't break off from psychiatry like that. But that doesn't mean you won't succeed. We need somebody to prescribe the drugs while we are slowly tapering to enable our brains to rebuild themselves. We also need to work on developing coping and self-soothing skills.

 

You can make it. It just takes a lot of patience, with yourself primarily and the system. You need to find a middle ground and use the system to your advantage.

 

Do you have any Cymbalta left?

 

A lot of people come here on a multiple drug cocktail. If you were on one drug only you have a big advantage. The sooner you reinstate the better. You can do it on your own terms. It's by no means a defeat! It just means doing things the smart way.

[KateL]

I have some cymbalta left. I took 30 mg today and 30 mg yesterday. I was on a dose of 90 mg beginning in July and cold turkeyed at the end of November.

 

I feel that the mental health system and the medical system have been too abusive to me to ever see another doctor or psychiatrist so I would have to figure it out myself using whatever cymbalta I have left. I have some of the 30 mg capsules and some of the 60 milligram capsules.

 

I just don't know that I can do anything without any real life support. I have no friends and no social contacts and no family. I do have coping techniques and self-soothing skills but they only get me so far.

 

In the past 2 years I was prescribed lithium and Zoloft. I stopped the lithiumbecause it wasn't working and I had side effects. I tapered off the Zoloft when it was recommended to me by a GP that I be on cymbalta. At that point I was suffering from severe pain from fibromyalgia.

 

My psychiatrist tapered me off the Zoloft and instated the cymbalta first at 30 mg and then quickly up to 90. Neither the GP nor the psychiatrist warned me about the difficulty getting off this drug. Which is par for the course.

 

I was also on heavy dose opiates from May 10th through early July of this year due to a badly fractured ankle and dislocation. I was sent to a rehab where I was put on heavy doses of Dilaudid. I also had a five-minute appointment with a psychiatrist in the rehab who put me on Wellbutrin and addition to the Zoloft that I was already on. I had told her that I'd been on Wellbutrin in the past and that I didn't respond well to it that it made me agitated. She prescribed it anyway. I stopped the Wellbutrin when I left the rehab.

 

I was also getting Ativan daily at the rehab. When I was sent home in early July I had no prescription for either the Dilaudid or the Ativan so I went cold turkey off both.

 

It bothers me that my quote was taken down with no reason given. Fine if you have to take my quote down, I really don't care but please don't do it without providing a reason. 

[ChessieCat]

11 hours ago, KateL said:

Not sure how to use this website or why the quote was removed.

 

I removed the quote because it was unnecessary.  Unnecessary quotes make your posts (and topic) very long, and it can sometimes be difficult to see the response because of the large amount of quote in the post.

 

Sometimes if we are responding to an entire specific post which is further back in a topic, or if responding to a specific portion of a post, it is helpful to include the quote.  To quote a portion like I did above in this post, you highlight the text you want to quote with the mouse and when you take your finger off the mouse you then click on Quote Selection which appears close by.  Sometimes is might take a couple of attempts for the Quote Selection to appear.  The quoted portion will appear in the Reply Box and then you type your response below it.

 

I hope that helps.

[KateL]

Okay, yes, I understand now. I didn't realize what the purpose of the quote field was. I thought it was like a signature. Thank you

[ChessieCat]

 

You're welcome.

 

On 12/29/2018 at 6:25 PM, JanCarol said:

First order of business, we'd like to have your drugging history in your signature. 

Account Settings – Create or Edit a signature. - to actually update your signature

 

We really need you to create your drug signature.  This allows the mods to see your drug history at a glance and means that they don't waste time reading back through your posts to get the information.

 

Keep it simple by following these instructions (NO diagnoses or symptoms please - thank you):

• details for last 2 years - dates, ALL drugs, doses
• summary for older than 2 years - just years and drug/s

Account Settings – Create or Edit a signature

[KateL]

I'm not able to do it at the moment... It brings up a huge amount of anxiety. I'll hold off on posting anymore until I'm able to do it.

[ChessieCat]

Yes, we understand but we do need the information so we can assist you.  It might help if you do it a bit at a time by writing it down on paper.

[KateL]

Okay.  I'll start writing things down. Is it possible to put up first draft of the drug signature and then edit it later to fill in more details?

Also, I know you don't want diagnosis or symptoms, and I understand the reasoning there... But I'm wondering if my BPD diagnosis is relevant just in that after I got that diagnosis there was a lot more polypharmacy? I was thinking to just put the date of the diagnosis and no one other information just to show what the difference was in terms of medication before and after the diagnosis?

Also, do I include things like ECT and TMS treatments? Apologies if this information is in the link... I'll look at it now.

Thank you

[ChessieCat]

No, just drugs, dates and doses.  If we want to know anything else we read back through the posts or ask the member to provide the information.

 

Yes, you are able to edit it.  We ask all members to update it whenever they make a change.

 

If you can start with the most recent that would be helpful.  The most important is the last 2 years.  But we will need the summary of the rest later.

[ChessieCat]

32 minutes ago, KateL said:

first draft of the drug signature and then edit it later to fill in more details?

 

We need it to be accurate so I suggest that you concentrate on the most recent and getting that right.  If you put up a draft and then change it that will get confusing for the mods.

[KateL]

Okay thank you. I'll try to get something up as soon as possible, concentrating on the past 2 years.

[JanCarol]

Hey Kate - 

 

How you doing with your reinstatement?  Is it helping?  Are you having symptoms?

So you reinstated 30 mg?  Do you have enough supply?  You can always get to a GP to get refills - you don't need a psychiatrist for that.  GP's are more than happy (sadly) to maintain us on these pills.

 

I think that it could be useful to see the months of your ECT and TMS - because those are destabilising factors.  "You might say, MMM-MMM (months) of  9999 (year) received XX (rough number) ECT treatments, and MMM-MMM (months) of  9999 received  XX (rough number) TMS treatments"  That would be one line of your sig.

START with this for your signature:
First antidepressant: 19xx (what year)

Polypharmacy started 2xxx (what year)
90 mg Cymbalta from (earliest date) to November 2018

CT Cymbalta - 30 Nov, 2018
Reinstated 30 mg Cymbalta 29 Dec 2018.

In time, you can list your CT's off polypharmacy as you remember them.

But by July of last year you were only on one drug, the Cymbalta, right?

I hope this finds you doing well - we'd love to see you set free of the psychiatric yoke, but you are more likely to succeed if you take it slow and easy.

Do you have any questions for us?

 

I hope you see the sun today!

[KateL]

Hi, JanCarol,

I'm sorry to have been out of touch for so long. I've been feeling really weak and having trouble getting things done. I did go back on the cymbalta at 60 mg. I have one more refill left so I have a couple of months I think until I will run out. I've been trying to figure out what to do. I just got on a waitlist to see a holistic psychiatrist who just opened a second office about half an hour from where I live. It will be six to eight weeks before they call back to offer me an appointment, and he doesn't take my insurance, but I am still hopeful that maybe he can help me.

The weather has really been getting me down and I've been feeling really weak and having some autoimmune type symptoms, so right now I'm just taking it as easy as possible. I'll try to be in touch again soon. Thank you for reaching out. Hope all is well with you and that you are staying warm. I don't know what part of the country you're in, but I understand that the weather is dangerously cold in a lot of the country.

Best,

Kate

[JanCarol]

Hey Kate - Thanks for checking in.  How's the reinstatement going?

 

60 mg reinstatement is kind of high - how are you doing?

I'm glad you are taking it easy.  We'd love to see that signature (I know, but - yeah).

 

It's good to rest and hold.  I'm a big fan of holding.

We have cautions about "holistic psychiatrists" who often want to give out a lot of supplements and "detox" in withdrawal.  It is good to have support from a practitioner for your taper - but they, too, are likely to go too fast.

 

My psychiatrist was holistic, and she thought that SA was too slow.  She also thought I would not succeed, and told me so.  When I told her I wanted to come off my drugs, she looked sad, like she was taking it personally.  When I got down to the level where she could no longer see the lithium on blood tests, she said, "fine to just quit" (I took another 6-8 months after that).  There's another psychiatrist here who is thrilled with his behavioural approach, and he tapers too fast, too.  So - they are out there - but they still often don't "get it," unless they have experienced it personally (like Kelly Brogan).  

I wouldn't suggest you not go - if you get the opportunity, by all means do. But be prepared to stand up for yourself.

keep warm, and I hope you see the sun today!

(I'm in Australia . . . so . . . while you freeze your patootie, we are sweltering, fires are burning, and animals are dying from heat exhaustion.)

[KateL]

Hi JanCarol,

Sorry to be out of touch. Things have been very bad for me.  I've never been this depressed for this long, or as alone as I am.  I lost my cat about a month ago (surrendered him to the veterinarian because she advised me to and I was in no shape to argue).  I was supposed to see that holistic psychiatrist on Friday, after waiting months for the appointment. His assistant called today and told me that he had looked at my new patient form and he won't see me because "he's not taking more borderline".

I don't think I'm going to be able to fill out the drug history... Do you want me to delete my account on SA ...or if it's possible, do you think you could delete it for me? I can barely shower and dress right now and I just know that trying to make that list is going to put me even more of the edge.

Thanks, 

Kate

[KateL]

Can someone delete my account? I can't do the drug signature. I can't do anything.

[JanCarol]

Hey Kate - how are you doing?

we cannot delete accounts on SA - the procedure is to just go away and ignore your account, if that's what you want.  Your posts will gradually drop down the ladder until they are hard to find.  We call it "floating downstream."  It doesn't take long for an inactive thread to go downstream and be "out of sight, out of mind."

 

Really, all we need to know is:  What were you on when you CT'd?

What dose/s did you reinstate?

What dates did you CT and reinstate?

really, I think you could benefit from talking to others - it sounds like you are struggling, like so many other members here, and could benefit from chatting around the site.

 

But it's up to you!  I hope you stay, but if you need to go, that's fine, too.

[KateL]

Hi,

I don't know if you got my other message. The holistic doctor wouldn't see me because I'm borderline. I'm completely alone in real life. I don't have one friend one acquaintance. I'm absolutely alone and the only thing I can do is wait to die. I don't even leave the apartment anymore. I don't think any amount of online support is going to make any difference for me because I am so alone in real life and online doesn't feel real to me. I just feel like I need to be dead.

[KateL]

I know I need to be dead but I'm too scared to do it.

[KateL]

I lost my cat. Someone called the police on me, I was in crisis unit overnight then discharged to walk home alone in dark because I'm along and my landlord had taken cat to vet and vet said I should surrender cat so I did.  There's not one thing stopping me from ending it but stupidity of not knowing how and fear.

[Shep]

I'm sorry about your cat, Kate. 

 

It looks like you are suffering from a very high reinstatement amount, but that was from when you were active on your thread almost two months ago.

 

Are you still taking 60 MG of Cymbalta? If you can give us more information about your situation, we may be able to offer you a plan to get on a more proper dose and then slowly taper off. 

 

If you are feeling suicidal, please seek support in person. Here are some suggestions:

 

For those who are feeling desperate or suicidal

 

 

[KateL]

I was taking 60 then 30 then none but don't have dates.  In person support would be going back to the crisis center that discharged me weeks ago to walk home alone in the dark.  I have no friends, no family, no one to turn to in person. I do not belong to a church. I guess I'm not suicidal because I am too afraid to do anything, I can barely move.  I am completely hopeless, 52 years old, I think and no hope left.  This is not just about cymbalta.

Anyone who can write an accurate statement of meds they've been on is in better shape than I am.  I was first given Elavil at 17 (1983?) And have been on literally dozens of meds for the last 35 years, often 3 or 4 at a time.  I have no written records.  I'm sure I have brain damage.

[KateL]

If I call a crisis line or go to ER they will say , of course, idiot, you went off your meds.

[KateL]

I did call my mother yesterday out of desperation even though she is 2000 miles away and verbally abusive.  The fact that I was in the mental health system for 35 years and now sicker than ever is all the ammunition she needs against me.  "Well every intervention you've ever had has gone sour" she says in this tone like, there's her proof, the problem is, was, always has been, me.  That's how most people feel. My son disowned me years ago.  So in person is not an option.  

[Altostrata]

Do you have any Cymbalta left, Kate?

 

Can you get back into DBT? You need to see someone face-to-face regularly.

[KateL]

The DBT program I was trying to get into cut off contact. 

Yes I have cymbalta left.

 

[KateL]

I've also never been in a DBT program where polypharmacy wasn't a big part of it. if they don't know what to do with the patient they send them upstairs to a doctor or to the hospital for med change or med increase or ECT. That's based on 5 times in DBT programs. The patient has no say in whether to be on meds, what meds, how much.  The polypharmacy was the worst, more meds than I had ever been on in my life, when I was in the DPT program which is part of a IOP which is part of a hospital where there psych ward is all about medicating.

[KateL]

This is why I tried to go to a holistic psychiatrist, the only one I had ever heard of in my state. I waited months for an appointment and his assistant called and canceled two days before the appointment and said, "he's not taking any more borderline".  it's the act of seeking help that always puts me in this situation. Since I got that phone call I have not been able to cope with anything and I am completely alone. If I hadn't sought help from that holistic psychiatrist I would not be in this situation.

[KateL]

If there's nothing you can do for me I understand. Of course there would be nothing you could do for me. Just ignore me.

[Altostrata]

Well, this is only a Web site. It sounds like you need help where you live. No matter how concerned we might be, we can't help you with that.

 

Please don't give up. Keep knocking on doors. The world is not against you, it's hard for anyone to get help.

 

What are your symptoms? How are you sleeping?