N2deep: 5 weeks on Olanzapine, hoping to get off

[OffPills]

1 hour ago, N2deep said:

Things seemed to be going in the right direction since I last posted. No crying meltdowns since then, until today. Had a pretty sizable one, uncontrollable sobbing and rage, pacing ... all that good stuff. Thankfully, these are time limited, and settle. But when I'm in them, man, I wanna ... disappear. 100% withdrawal, 0% real me. I think that I am generally better than I was 2-3 weeks ago, but I've got a ways to go. I find it disconcerting how long it's taking for stabilization.

Good that things are going in the right direction, although having the crying meltdown with rage today. I have them too every now and then, but I do feel some relief after, I hope this is the case for you as well. Stabilizing takes some time, things will improve! I wouldn’t be too concerned about your muscle twitching btw, I consider them as a typical wd symptom.

 

Stay strong!💪🏻

[N2deep]

Thanks OffPills, appreciate it!

[N2deep]

Journal:

My sleep has been better (relatively) and the twitching is mostly gone. I have emotional meltdowns every 2-3 days, crying, sobbing, screaming at times. Though parts of the day I feel good. Today I just feel not at all well so far today, despite good sleep. I feel depressed, agitated, and just gross. I feel like I might be losing it at times.

I never had bad OCD before the drug. Now I have health anxiety surrounding COVID (quite reasonable despite most living in la la land), I wash my hands A LOT. I'm also quite scared of getting sick from food-borne illness because this could cause vomiting so much that I can't keep my doses of the drug down and making my WD symptoms worse. I was never like this before taking this poison. I feel like I'm in such a precarious state. I'm just so scared of so many things. As others have mentioned, these drugs do not stabilize mental health, they are inherently destabilizing. I just don't know what to do other than hold and hope things get better - I didn't think it would take this long.

 

I've been taking melatonin for about 4 weeks now and am going to stop taking it tonight. I'm not sure it causes any dependence but I'm still scared stopping will do something bad somehow .... I get obsessed with stuff like this, I can only concentrate on things that cause me fear.

 

I'm talking to a psychologist. He's pretty good I think. He used to be a director of psych facilities and he generally agrees with what I say about how messed up the system is. He has met Robert Whitaker. He says my obsessions are reasonable given my experiences, but I think my behaviours may be a bit beyond how he sees it.

I get so angry that doctors did this to me, and I obsess about that too. I've had a prior experience with doctor's decisions essentially ruining my life. Fool me once ...

The bottom line is I'm just scared of anything more happening to me at this time, as this is already as much/more than I can handle and any more sickness or whatever would just decimate me/complicate the situation. And there is nowhere to go for help, I think we can all agree on that. If I get out of this, and I will, I want to change that. I really want to fight this institutionalized drugging situation. I can't cure horrible diseases, but this psych drug fiasco is a purely political problem, that can be fixed by normal people fighting it.

 

I hope the rest of y'all are in a big beautiful window.

[OffPills]

Good to read that you’re positive about your psychologist and that he gives you the impression being on your side. That’s a good base for the relationship between you and him, and a crucial one.

 

I have no experience with melatonin. Our body produces it, and I read it’s relatively harmless and not addictive. However, It can lead to some side effects, like your agitation. So trying to sleep without the melatonin is always a good thing.

 

I hope your symptoms will disappear soon. Stay strong!

[N2deep]

I find it very problematic that Outro Health, and Horowitz' new Maudsley guide on tapering both exclude antipsychotics.

 

When my doctor halved my dose and I was in the throes of akathisia, I called Outro health to see if they could help me get a new provider. Well, one of the founders, returned my call. He informed me that no, they, the providers, and I believe he mentioned the backers did not feel comfortable helping this patient population. He talked to me more like some startup bro, and with zero empathy. I mentioned that there are leagues of victims who were put on antipsychotics for minor sleep issues, anxiety, depression, and all kinds of nonsense, but he wasn't hearing it.

 

And as for Horowitz' new book, I have read some of it and it mentions antipsychotics multiple times at the start but provides no guidance and explicitly excludes it in the name of the book. ... Like oooh no, we can't be getting those REAL crazies off the meds. I mean, those people on AD's, benzos, Z drugs etc ... those are victims. Antipsychotics, on the other hand, that's a bridge too far. Those AP people are sick ... it says right there, "psychotic" is right in the name. And that is a chemical imbalance ... a legit brain disease, and neuroleptics are the cure.

I mean, Horowitz has a paper about tapering APs ... so what gives?

 

I fully understand that it's better for these things to exist, than not, and we can't create a perfect world immediately ... but this here makes no sense ... if my doctor can prescribe 25mg of Seroquel for my minor sleep issues, then that's your damn cover to provide tapering info for Antipsychotics if that is somehow otherwise medically (politically) impalatable.

[LotusRising]

5 hours ago, N2deep said:

I find it very problematic that Outro Health, and Horowitz' new Maudsley guide on tapering both exclude antipsychotics.

Honestly, I think it's more problematic that doctors are prescribing them unnecessarily in the first place. And if you do a search online, you'll see that a companion guide covering antipsychotics, among other things, is in the works for a second volume. I wouldn't imagine it's an easy task to write one of these books. 

 

It really does sound like your putting down a group that was spreading awareness and trying to legitimately help people. Am I misinterpreting what you're trying to say?

 

5 hours ago, N2deep said:

I mentioned that there are leagues of victims who were put on antipsychotics for minor sleep issues, anxiety, depression, and all kinds of nonsense, but he wasn't hearing it.

I don't think that one person would be able to answer the very complex question of why these drugs are being prescribed off-label so readily. 

 

 

[N2deep]

.

[N2deep]

You must excuse me, once in a while I may get a bit over-animated and my message may be lost because of this.
 

Of course, doctors prescribing antipsychotics for minor issues unrelated to psychosis is highly problematic. I just wish more knowledgeable doctors and organizations were involved in deprescribing antipsychotics for people who were prescribed these drugs for any and all spurious diagnoses.  The two most recent steps forward in the deprescribing space that I'm aware of were the formation of Outro Health and the publishing of the new Maudsley Guide but Outro Health does not take on those on antipsychotics, because they "do not feel comfortable” working with this population (I was told this directly), and the Maudsley Guide does not specifically address antipsychotics. This sense of exclusion seems unfortunate from within the inclusive community of SurvivingAntidepressants, where anyone who wants to taper ANY psychiatric drug is welcome and supported. I guess the involvement of the medical community in these efforts requires compromise.

 

I’ve not seen any information about a companion guide covering antipsychotics in the works for a second volume.

Again, I appreciate the efforts of any individual or organization that moves the needle forward on getting folks off psych drugs. This includes the obviously herculean efforts of Mark Horowitz, as well as that of anyone involved in Outro Health.

[N2deep]

 

Journal:

I've been feeling better since my last journal post on March 11. Had somewhat of a minor wave in there for a couple days, but, I really think I'm through the worst of what (I believe to be a crash) has had to offer since it started a little over 5 weeks ago. Sleep has been quite good, not the 9 hours I always got before the drug, but way better than it was when SHTF. Twitching is virtually gone, maybe happens for a second every couple days.

 

So I'm not sure how to move forward. In the future, I am going to make a serious effort to listen to my body and symptoms, and make sure I don't let symptoms stack up and cause another crash. I'm only making small cuts each time but they can seemingly compound and blast me out of nowhere. My symptoms may not always hit in the usual 3-5 day range, they can seemingly hit weeks later.

 

I think I may be on the precipice of stability. Not sure how long I should hold here. Always in the back of my mind is "hold longer for stability, or drop because I still haven't been on the drug long and the longer I'm on cutting may get harder" ... ah the old carnival of the mind, it never stops.

 

Speaking of that, I still definitely have some OCD-like tendencies/intrusive thoughts. Not sure if this is the drug, WD, or just the natural outcome of being in a effed situation or any combination of which. I've always naturally been like this to some degree, but not like this. Not sure how much better that symptom is getting.

 

My dad thinks I'm in the best shape I've been since I started the drug, I'm not sure I thought I was doing pretty good in maybe November for a while, before my quick cuts started compounding, but he might be right.

[N2deep]

Spoke too soon on the twitches. A muscle in my palm has been twitching on and off all day ... sigh. I also didn't want to even mention it, because I'm not even sure it's happening, but for a while it seems like my tongue feels like it is just barely trying to twitch ... ugh, it's basically nothing at all, but I swear I can feel it. All the rest of the twitches that have come and gone - cheeks, lip, eyelids, toes, hand now ... well I can see it happening, so I know it's real.

I just don't know how to deal with this going forward. It's been TWO MONTHS since I last dropped ... am I just supposed to stop tapering every time I get twitches? ... if it's actually TD, one would think keep going is the better move (even while twitching), but withdrawal-emergent TD, well it would seem it might be better to go slow. Either way, no help out there. Unless anyone has any ideas, it seems all one can do is keep it slow and hope and pray things don't degenerate into some ODB Shimmy Shimmy Ya-like symptomology.

 

[hayduke]

21 hours ago, N2deep said:

withdrawal-emergent TD, well it would seem it might be better to go slow

I would favour holding until it resolves.  It suggests dopamine supersensitivity i.e. your body has developed more dopamine receptors than it had before the drugs, in response to the dopamine blockade from them.  Now it is getting more dopamine on your lower dose, and it will need some time to reduce the number of dopamine receptors.  The risk is dopamine supersensitivity psychosis.

[JandD]

Hi N2deep - I would like to briefly describe our experiences.

• Continuous reduction every few days has caused more withdrawal symptoms after a while, even if they were only small steps. 
• We then changed it to roughly the following monthly routine: day 1-3: 3 small steps and reduction by approx. 7.5% - day 4-7: maintain level - day 8-11: 3 small steps and reduction by approx. 7.5% - day 12-31: maintain level.
• I think I have read here in the forum that the body is only able to "switch over" and adapt the receptors to the lower dose after a certain time (perhaps at least 14 days - varies from person to person).
• We repeat this every month until the original olanzapine dose has been halved (i.e. after approx. 4-6 months). Then the body seems to need a slightly longer break to adapt. We then switched to reducing the other medication (mirtazapine). This cycle then also lasts approx. 3-6 months.
• Each medication has a different "receptor profile" - which type of receptor is affected and to what extent. As you are only taking one, it is not relevant.
• We use an Oura Tracking Ring to record sleep values (and any deterioration). We also record any mental or physical symptoms - and fine-tune the dosage and dates accordingly.
• Dosing by scales was too imprecise for us. We have therefore been reducing with water and a pipette for over 1.5 years.
   

Regarding TD:

• After reducing from 20mg to 9mg olanzapine, it was not clear whether mild TD symptoms were caused by reducing too quickly or by the side effects. After holding the level for three months, the symptoms did not improve. 
• We then reduced again and took food supplements that have a positive effect on TD (vitamin C, vitamin E, grape seed extract, B6, polyphenols from green tea). Magnesium and omega 3 are generally good. At the same time, make sure that certain things are not consumed (coffee, sweeteners such as aspartame, tyrosine (energy drinks)). When the Olanzapine reduction is complete, we will also use some Ginkgo Baloba. 
• The TD symptoms have fortunately disappeared again with these measures and decreasing doses.
• I suspect you don't have TD as your dose is quite low and you have only been taking olanzapine for a short time.
   

To summarise ;-)

• Give your body smaller and larger breaks to adapt
• Do positive things such as sport, nature, good nutrition and supporting food supplements
• Keep a diary / log to recognise correlations. Find out whats works best for YOU
• Be positive - you have already achieved a lot and your dose is relatively low. Don't stress too much (about all the negative things in the world), but focus on the good things in YOUR life. All the best!

[N2deep]

@JandD - Thanks so much for your comment. I'm glad the TD went away for your wife, and that you have been able to get your doses down relatively quickly. I'll try to be positive ... I do tend to ruminate.

 

Hayduke - Thanks again. Yeah ... I know it's wisest to hold and let it settle. I've been holding for a darn good while lol. Still get some twitching here and there. Now, I've always had fasciculations ... when the long covid was bad, I had a ton of it. Though, before this poison I've never noticed it in my lip/cheek area before. I wanna cut, but I guess I'll wait some more.  The other option is just to go quite slow, as in, 0.05mg every couple weeks - equaling 6-7% per month at the moment ... I mean, I don't think I'm going to just drop into psychosis from that, after holding so long, and the twitching being 95% better, but who knows. I know I don't want to get more meds poured in, so better safe than sorry.

[N2deep]

At the same dose I was 3 months ago ... still twitching. 🤬

[hayduke]

@N2deep in hindsight, this is around the dosage I would have held for until the twitching stopped.  Sorry you are still experiencing these symptoms.  I don't know how long it will take, but after what happened to me, I wish I had waited to find out.

 

On the bright side it's a very low dose.

[Tale]

17 hours ago, N2deep said:

At the same dose I was 3 months ago ... still twitching. 🤬

Hey, I'm sorry this symptom is not going away for you. It can be quite annoying and even embarrassing when being around others. I also get a lot of muscle twitching everywhere in my body. It is especially bad after any sort of physical activity. It tends to get better tho. Have you been doing a lot of things lately? And when I say a lot, I mean a lot for someone in withdrawal. I always get caught thinking that "but I barely did anything!" and forget that we are not very resilient in withdrawal.

 

We both seem to be stuck holding our doses. Trust me, I'm constantly thinking of tapering, but I end up not doing it because I'm terrified and deep inside of me I know it is just withdrawal and I'll probably make things worse. I assign a score from 1 to 5 to every day and I'm not going to taper until I get 3 or more for at least two weeks straight. So far that hasn't happened lol. One day at a time. We will make it!

[N2deep]

Hayduke - When you say "after what happened to me, I wish I had waited to find out", what specifically are you referring to? Thanks.

 

@Tale- Yeah, I'm always thinking about tapering too, and I'm also scared. Can you tell me more about your twitching symptoms (where,how often, intensity)? ... I haven't been doing much of anything, really, but I'm naturally a pretty high-strung, stressed individual and I don't think that helps. I think your habit of assigning a score every day is a wise one, I should start that. I just also want to say that even if you are in a wave or whatever, that I am VERY confident that you are going to get off your drug and be home free. Just gotta sit tight for a bit.

[Tale]

29 minutes ago, N2deep said:

Can you tell me more about your twitching symptoms (where,how often, intensity)?

Before I ever took ADs I'd had twitching in my eye lids maybe twice in my entire life and it didn't last long at all. Now I've had twitching in a lot of places like the palms of my hands, my legs, my arms and more rarely my scalp, my chest, my belly and other random spots. It can be quite frequent. Sometimes I've even had multiple spots twitching at the same time lol. The worst days it can be around five minutes every couple of hours. The better days it might be twice a day or so. Luckily for me it is never very intense. I can feel it going very fast sometimes, but never very strong. It gets worse when I've done any physical activity or whenever I tapered. I also get buzzing in similar parts of my body. It feels like twitching and buzzing come together! I recently read an old post in here that said all the symptoms we have are the body trying to heal. That helps me to feel like I'm on the right track.

 

Thank you for the encouragement! It means a lot. I also believe that your journey will be successful. I hope you stabilize soon. ❤️

[N2deep]

Thanks, Tale. I think we've had quite similar experiences as per the twitching. A couple comments up you mentioned the twitching being embarrassing, and I thought jeez, it must be pretty bad if other people can see it, but now I understand it's not too strong, just happens a lot. Same as mine, one wouldn't be able to notice even if my eyelids twitch unless they got up real close and I told them to look.

 

It's gone away about as much as I can hope for atm, I think I might start dropping again soon.

[N2deep]

Restarting the taper. 1.50mg ... 3.3% drop. I intend to drop another 0.05mg in two weeks. So in the short term these drops are in the 6-7% per month range. And we'll see how it goes from there.

[N2deep]

What I believe to be withdrawals have hit me hard today, 3 days after my drop. I have been crying and pacing around all day. Now, I've had a VERY stressful thing happen (a health issue) come up, but I don't think that explains it. The last time I dropped to this dose (1.50mg), I felt (relatively) fine for a while, and it took me 18 days before I felt the need to updose (because I developed bad insomnia at that point). Then I HELD for MONTHS, and now after having HELD FOR MONTHS, I am getting ROUGH withdrawals, after dropping just 3.33%. WTF IS HAPPENING TO ME? After holding for months, the drop is worse than the last time I dropped to this level. WTF. I don't know if I should updose, or what?

 

I have to deal with doctors hopefully soon, and I don't need the stress, or looking like a crazy person. But I don't know if updosing will help, or whether that is a stupid thing to do. I just can't believe this.

[Tale]

Hey, I'm very sorry this is happening to you. Combining stress and withdrawal is the perfect recipe for having a bad time. It is not your fault. You are doing the best you can. I hope this health issue you mention is solved as soon as possible.

 

I wouldn't make any decisions right now. Updosing might make things worse. But I'm not a mod and you know yourself best so take this advice with a grain of salt.

 

This is all temporary. I know it is hard to believe when you are in a wave, but that's the truth. I wish you all the best ❤️

[hayduke]

5 hours ago, N2deep said:

What I believe to be withdrawals have hit me hard today, 3 days after my drop. I have been crying and pacing around all day. Now, I've had a VERY stressful thing happen (a health issue) come up, but I don't think that explains it. The last time I dropped to this dose (1.50mg), I felt (relatively) fine for a while, and it took me 18 days before I felt the need to updose (because I developed bad insomnia at that point). Then I HELD for MONTHS, and now after having HELD FOR MONTHS, I am getting ROUGH withdrawals, after dropping just 3.33%. WTF IS HAPPENING TO ME? After holding for months, the drop is worse than the last time I dropped to this level. WTF. I don't know if I should updose, or what?

 

I have to deal with doctors hopefully soon, and I don't need the stress, or looking like a crazy person. But I don't know if updosing will help, or whether that is a stupid thing to do. I just can't believe this.

I would revert to your previous dosage and hold.

Sorry you're having such a frustrating time of it.