Fredlo: hello - my too fast taper caused trouble

[Fredlo]

I’m having a very hard time with a withdrawal situation and I’m grateful this site is here. After dropping my Prozac dose to nothing, I came off 2.5 mg of Zyprexa last summer, very quickly. I tried to tough out the worsening withdrawal symptoms. I was getting manic until I became psychotic for three months.

During the psychosis, I was often extremely restless, sometimes wanting to jump out of my skin. But I was also delusional and euphoric.

When I got out of my second hospital stay, I was on Risperdal and Depakote. I’d come out of my delusional state, and was no longer restless, but I was still confused and just beginning to heal. Also, I didn’t have a psychiatrist, just refills. I’m sad to say that I was still eager to be off meds and thought I could titrate myself. I went off very quickly and, though the delusions didn’t come back, I soon became very agitated. I ended up messing with my meds on my own for three months. It was like I was trapped, unsure of what dose to take every night, wanting to stay on one dose but scared it was the wrong one. I was experiencing agony, including emotional fits and depression. I couldn’t sit still, and learned the word “akathisia.”

I finally found a decent doctor who tried to keep me on a steady dose of Risperdal, as it could be worsening the akathisia, but I’d get back to a good place with it. When that didn’t happen, he switched me to 5 mg of Zyprexa, and, when that wasn’t enough, 10 mg (which I’ve been on a few months) That alleviates most of my suffering, but I still have trouble sitting still, reading, verbally communicating, and keeping my attention on one task. I also just don’t feel like the same person I was before this dreadful year, which is very frightening.

Now my doctor isn’t sure if I have akathisia or agitation, or both. But my fear is how long it’ll last. I met someone who experienced this kind of condition for 10 years after coming off an anti-psychotic. I don’t want to be on 10 mg of Zyprexa that long, and I’m not even functional on that dose.

Thank you for reading. I’m looking for some hope, or advice.

[Songbird]

Hi Fredlo, welcome to SA!  Sorry to hear you have had such a rough time.  I have also learned the word akathisia - it is I think the worst thing I've experienced.

 

It would be helpful if you could create a signature with your med history, including all drugs, doses and dates (starting and stopping).  You can edit your signature under your Account Settings.  See this topic for more info: Please put your withdrawal history in your signature

 

This will help us get a better understanding of your situation, then we'll try to help you as best we can.

[Fredlo]

Thank you, Songbird. I created the signature.

[Songbird]

Hi Fredlo, could you please add the dates (months and years) and doses of all your Zyprexa dose changes.  Also please add the Risperdal and Depakote doses including start and stop dates.

 

 

[Fredlo]

Thanks again, Songbird. I edited my signature as you asked.

[Fredlo]

Zyprexa Re-instatement

 

Hello.

 

I’m doing much better since my intro, and I can more clearly explain my situation. I’ve also read so much more on this site, now that I can really read again. I sure wish that I (and my doctors) had known this stuff before my disastrous near-cold turkey drop from 2.5 mg of Zyprexa in the spring of 2017. It led to months of withdrawals that I thought I should tough out, which ended with psychosis, hospitalization, a lot more meds, then severe agony with akathisia/agitation. It was the worst mistake I’ve ever made. It’s now been over two years since the initial drop and about 20 months since the zychosis, and the drastic reinstatement-and-then-some. Things are rough and I don’t feel quite like the same person, but I’m so happy the worst is over.

 

Within the last year, I’ve gotten down from 10 mg of Zyprexa to now 4 mg, without much trouble. I’m also back on 30 mg of Prozac (I was on Prozac most of my life). I know Prozac is more activating, but I think getting back down to 2.5 mg of Zyprexa should be my first priority? I have very high cholesterol now, and it was fine when I was on 2.5 mg. Though I will say I had major sleep problems when originally dropping the Prozac that I do not want to face again.

 

Until recently, I’ve been using a scale, but I’ve worried about the accuracy. I went down to 5 mg and stayed there for several months. Then I went down to 4.5 with my scale. It was a huge improvement. Then I found a compounding pharmacy near me, and they made me 4 mg capsules. I started that two weeks ago, and things have been very different — in some bad ways, but mostly very good ones again. It is different enough, though, that I wonder if I’m getting the same ingredients.

 

Also, the pharmacist I spoke to at this place says he doesn’t want to go into increments less than a quarter of a milligram. I’m going to try to speak to another pharmacist there, but my current plan is to go down by a quarter of a milligram every month, reaching 2.5 after 6 months.

 

I worry that, with this zychosis, I’ve ruined any chance of coming off the Zyprexa entirely, but I suppose first things first. I want to get down to 2.5 again and take things from there.

 

Thanks.

 

Edited June 3, 2019 by ChessieCat
added topic title

[ChessieCat]

 

2 Introduction topics merged.

 

 

16 minutes ago, Fredlo said:

I started that two weeks ago, and things have been very different — in some bad ways, but mostly very good ones again. It is different enough, though, that I wonder if I’m getting the same ingredients.

 

Some members find that when they change the form of a drug that they experience an increase in symptoms.  It seems that you may have changed form and reduced at the same time.  SA recommends only making one change at a time.  Keep it Simple, Slow and Stable

 

Please update your drug signature if/when applicable:  Account Settings – Edit a signature

[Fredlo]

Thank you. That makes sense.

[Fredlo]

ChessieCat, things are getting a little more worrisome and I'm having trouble finding the info I need. Do you know anything else about capsules vs. tablets, or perhaps different formulas used by compounding pharmacies? I realize I made a bad change, but I'm not sure what to do now. My best idea is to continue the 4 mg capsules for another month and see how that goes.

[ChessieCat]

In what way are things becoming worrisome?  Are you experiencing an increase in symptoms?  If yes, what has worsened?

 

I'm assuming that you made a reduction at the same time as you changed to capsules.  If you have done this and things have changed and/or worsened, it is difficult to know what might be the cause.

 

Q:  What did the pharmacist use to create the capsules?  Did you provide the tablets?  Were they the same brand of tablets that you had been using?  If they were a different brand then that is another variable which makes it harder to know the cause.

 

It takes about 4 days for a dose change to get to full level in the blood and a bit longer for it to register in the brain.

 

Your best option at this time might be to hold on the dose using the capsules.  If after a few weeks you find that things are still the same it might be better to change back from the capsules.

 

Please keep daily symptom notes.  If things don't improve, please post the notes and they can be assessed to try and work out what to do.

 

Example:

 

6 a.m. Woke with anxiety
8 a.m. Took 2.5mg Lexapro
10 a.m. Stomach is upset
10:30 a.m. Ate breakfast
11:35 a.m. Got a headache, lasted one hour
12:35 p.m. Ate lunch
4 p.m. Feel a bit better
5 p.m. Took 2.5mg Lexapro
6 p.m. Ate dinner
9:20 p.m. Headache
10:00 p.m. Took 50mg Seroquel
10:20 p.m. Feeling dizzy
10:30 p.m. Fell asleep
2:30 a.m. Woke, took 3mg Ambien (NOT "took 1/2 tablet Ambien")
2:45 a.m. Fell asleep
4:30 a.m. Woke but got back to sleep  

 

 

[Fredlo]

Thank you for your prompt and thorough reply. I hadn't felt up to writing, and I wanted to describe the situation well. I did start taking daily notes for myself. Organizing my thoughts and articulating has been one of the things that's been difficult over the past two years, and I was having anxiety responding to my satisfaction. I'm still not sure exactly how to describe the change. I certainly had an increase in some of the symptoms that started when I first went off the olanzapine, and in the turmoil that followed, but to a much, much lesser extent. These include restlessness, trouble keeping my attention on things, and repetitive thoughts. I generally feel a bit blanker, like part of my brain has been removed. It scared me, but things have gotten better over the last couple of days.

 

It turns out I am taking a different brand now. I've been taking the compounding pharmacy's olanzapine, not giving them tablets. I'd been on Prasco, apparently Eli Lilly's authorized generic, and now I'm on Dr. Reddy's olanzapine. I'm wondering how worried I should be about that, having been probably on one brand for more than fifteen years.

 

I don't think it took more than week for me to notice a change. I certainly believe that time table about dose change, but can't new problems arise longer after a change? I kept getting worse months after going off olanzapine two years ago. I realize that doesn't really contradict the time table, just trying to understand the ways of withdrawal.

 

So I guess I'll stay the course for now, or else try the other brand without changing my dose?

 

Again, thank you for being so helpful. This is great.

[Fredlo]

Also, I just found out my prescriber can insist on a certain generic brand, so I'm wondering whether to try that.

[ChessieCat]

It is best to stay with the same "brand" if possible.

[Fredlo]

I’d like to finally update this again. There’s no one in my life qualified to advise me about my meds, and I’m hoping to get some feedback. But I also have mostly good news to share. For almost a year, I’ve been back on 2.5 mg of Zyprexa and things are going well. I was able to heal during the reduction by going very slowly and taking good care of myself. But I noticed the most improvement in the months after I got down to 2.5 mg and stayed there. It’s been four years since the onset of my crisis brought on by my Zyprexa withdrawal, and I’m quite stable and happy.

 

Feeling ready for the next step, on June 13th I lowered my Prozac from 30 mg to 27 mg. I’m prescribed both a 20 mg and 10 mg capsule. I measure out 20 ml of water into a tiny glass, using a 10 ml oral syringe twice. I open the 10 mg capsule and empty it into the glass, then stir vigorously with a glass rod. I use the same syringe to take out 6 ml of the solution, then I down it.

 

Because of Prozac’s half-life, I chose to wait longer than a month to see how the reduction would affect me. After about two months (ten days ago), I encountered an extreme change that I’m convinced is because of the drop. I now have depression-like symptoms, low energy, disassociation, and lack of interest in activities I’d done before, and in people in my life. It’s harder to get things done, like a weight is holding me down. But at the same time I’m a little happier. Most of the activities I lost interest in weren’t really productive. I remain very involved in my work, and keep in touch with the people closest to me. It’s quieter in my head, my thoughts are slower and there’s less of them, as though half of my brain went to sleep. Overall I’m clearer and more connected to myself. But it’s difficult, and I’m not sure I can sustain this if I don’t level out a little bit soon.

 

I’m asking myself: should I have tried to stabilize longer before making a change? Is my CNS too sensitive? Did I do more damage? How long will it take for my brain to re-engineer itself and adjust to this? Should I consider going back up to 30 mg or to 28.5? Prozac’s half-life seems to make things tricky. How do I know if I’ve already gone too far with this change to re-institute? How long would it take for a re-instatement to take effect, and will I be too settled in by then? When will it be safe to lower the Zyprexa further if I’m lowering the Prozac with these consequences?

 

I went on 80 mg of Prozac at the age of 11, and except for a brief dip to 40 mg when I was 14, I stayed on the 80 mg until I was 30 (8 years ago). I can get into my history in more detail if that’s helpful.

 

I’m concerned that I’m not getting a consistent dose with my solution. Initially I found it shockingly bitter and indeed had to chase it with juice to rid the taste from my mouth. But soon I no longer had that issue. I figured I’d gotten used to it, but lately there are times when it seems more bitter than others. I had chocked this up to perception, but I don’t know for sure. I had to change my syringe because eventually the water would dribble and splash in the glass as the plunger got close to the nozzle. When I used the new syringe, I found the plunger moved much more smoothly through the tube. The former syringe’s plunging issue had come on so gradually I hadn’t noticed it. Now I plan to change the syringe every few weeks.

 

I still intend to try to get off Zyprexa completely. I chose to lower the Prozac first because it’s so activating and Zyprexa so sedating. I had hoped to get to 20 mg of Prozac, but had to see how it went. I can’t predict the future, but I don’t think I dare go lower than that. Whether or not it’s right for me, I believe I can get away with being on 20 mg, or even 30 mg, of Prozac, for the rest of my life. But I can’t say the same about Zyprexa. It feels dangerous to go too far into my forties on 2.5 mg of Zyprexa, and it will take several years to reduce it completely. I don’t want to put off starting that reduction for too long, but of course I don’t want to do it too soon. I can do it while on either 20 or 30 mg of Prozac. Right now, I can either go back up on the Prozac, or stay on 27 mg at least through the winter.

 

Thanks for reading. I know so much more about my situation than I did four years ago, in large part because of this site. I’m glad to be able to share my story.

[MarkDavid]

@Fredlo  I get repetitive thoughts and songs that go over and over and over in my head when I reduce.  But I am going slowly off the Risperdal which I noticed is a drug that 

you have also been on yourself after the Zyprexa.  I too could not read on the Zyprexa.  And I have trouble when I reduce concentrating on things.  I haven't added this to my drug signature but the psychiatrists have prescribed me Zyprexa and Seroquel two decades  before I became dependent on Risperdal.  Thank you so much for your experience here on the platform.  If I wouldn't have read your testimony and those similar I might have really damaged my brain and I know for sure I would withdrawal too fast.  I already am going too fast.  But I plan to stabilize for 3 months and then continue to decrease much more slowly.  Because I have been told that when you decrease at lower doses it becomes increasingly  more difficult.  So by the time I plan to decrease again I may be more prepared with a scale and liquid concentrations instead of my pill splitting. 

[Fredlo]

It’s been about five and half years since the height of my withdrawal crisis. Things are going okay for the most part. I’ve gone through a lot growth. I’m working closely with a trusted therapist, and making progress on issues I have that make it hard to deal with challenges like a medication taper.

Except for a brief effort to taper my Fluoxetine which I decided against, I’ve been steady on 30 mg Fluoxetine, and 2.5 mg Olanzapine, for about two-and-a-half years.

 

Last year I found out I had thyroid cancer, which has been a lot but it’s treatable. In September, 2022, I had a complete thyroidectomy. And there were also a lot of lymph nodes to remove as well, so it was a big surgery. I also had a radioiodine treatment. But I’ve had very good care and it went well. For now, there’s no sign of cancer. I take Levothyroxine now in absence of a thyroid. Unfortunately, I’ve been depressed, often weak and fatigued. I’m trying to figure out the best thing to do, whether to try T3, etc. Maybe I just need time.

 

Something notable occurred, about a year ago related to my withdrawal history. I’ve had aftershocks to my crisis, and usually I don’t know what brings them on. I find myself in a similar state to my initial Olanzapine withdrawals in 2017, before it got out of hand. These aftershocks involve a different mental state and trouble getting much sleep, but have not been problematic. Last spring I tried to return to work at grocery store (after being fully vaccinated for COVID) and though I didn’t feel stressed, I had the biggest aftershock yet. It was quite an altered state that included repetitive thoughts that I compulsively spoke aloud when alone. I imagine PTSD might have something to do with it. It got worse until I had to quit the job, and now I’ll have to try again somewhere, and start with very few shifts.

 

Something else happened that I’m wondering if anyone else has encountered. Prasco, the company that manufactured Eli Lilly’s approved generic, stopped making Olanzapine. I seemed to have had a reaction CVS’s new default generic, Macleods. With a prior authorization, my current insurance covers brand name Zyprexa, so I had my prescriber specify “no substitutions” and I take Zyprexa brand now. It seems to be closer to Prasco than Macleods is, I’m hoping I can continue this way. It might interest some people to know that the Zyprexa tablet is considerably larger than the Prasco generic tablet, or the Macleods.

 

I was on Pantoprazole, for acid reflux, 40 mg daily for 30 days, between March 2023 and April 2023. I think I might have been having adverse effects. Now I take Famotidine 20 mg, as needed.

 

After my experiences, I am extremely sensitive to any change in my psychiatric meds. I don’t know what the future holds, but I know I’m holding the doses where they are for now. I’m not feeling terrible about that. All in all, I’m mostly doing okay.