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Well, MAYBE 'activating' is a stretch, but I've been on it two nights (10mg...go up to 15mg next week and I see pdoc again in 2.5 weeks) and both times I woke up early - I NEVER wake up early - and my watch tracked less deep sleep than normal both nights.  I even got up and ran this morning.  Yesterday I got into work at 7:20am.  I have a long commute on the subway too.  I thought it would sedate me but so far not at all.  I'd worry it's too activating but I think I'm just not used to the energy?????

Is this totally abnormal?

Also around my neck, kind of crinkles like it's going over something crackly when I rub my neck (I noticed my neck hurt).  Apparently you can get sore lymph nodes in the neck so even though the crinkling is weird I expect that's what it is.

But holy holy zyprexa munchies!  My pdoc faxed a prescription for metformin to the pharmacy today.  I ate a bunch yesterday - but then, this morning, BEFORE breakfast, I ate:

-a banana

-a berry bowl

-a jar of pickles

I then had my breakfast (oats soaked in oat milk blended with banana, hemp hearts, ground flax, pumpkin seeds and protein powder), followed by a big bag of Skinny Pop popcorn.  I also ate a bag of baby carrots (which I loathe, but I don't have proper knives at work so when I went to the grocery store across the street, desperate times) and for lunch I ate quinoa, red pepper, broccoli, kale, and black beans in a spicy peanut sauce.  I finished up mid-afternoon with a nanaimo bar (cause that'll be good for not getting insulin resistance....). 

I am still hungry.  I had a brief two hours window where I wasn't consumed with hunger.  My first thought on waking was 'I am REALLY hungry' most of my run I thought about how hungry I was and I've spent most of the day hungry.  I've fasted in the past before and this level of hunger is NOT normal to me!  

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2 hours ago, Iceberg said:

@jarn is it at all possible that the energy isn’t directly from zyprexa but because it is reducing symptoms? Is it for psychosis? That’s a pretty aggressive dosing approach 

It is for psychosis. 

I wonder if it's reducing symptoms too.  I've been a bit mixed, but more depressed and irritable, and I feel pretty normal right now.  Though I did have 'aura-like' (I think) hallucinations at work today.  

I think too pdoc is dosing better because when they took me off loxapine in the fall (prolactin) and put me on haldol he was concerned about continued hyperprolactinemia so used a sub-therapeutic dose and I became psychotic within a few days.  Even once the dose was raised I was still super unstable.  AND haldol raised my prolactin even more so we went back to loxapine.  So I think this time pdoc knows (I've only been seeing him since September) that I need beefier support where psychosis is concerned.

Edited by jarn
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What I’ve been doing to counteract hunger on zyprexa is preparing a measured out bowl of nuts that I put out in the morning on the counter, or in a baggy to take with me on the go. Whenever I get a hunger pang or craving, I eat 2 or 3 nuts. It seems to work okay. I try to have as few carbs as possible before dinner. 

Today to cut back further I measured out two generous servings of carrot chips and then measured out 2 servings of lite ranch dressing (to make the carrots tolerable). I’ve been going to these when I get cravings or hunger. I have 2 or 3 dipped in the sauce and it seems to satiate me for awhile. 

I definitely need something to turn to because I do get the hunger and food cravings from zyprexa. 

If I give in and have something carb heavy or sweet early in the day, the whole day is lost and the cravings are much, much worse. 

I thought I’d add that I find zyprexa to be very sedating. I can only take it right before bedtime. 

Edited by saintalto
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Yeah the plan was to eat as many fruit and veg as possible...the popcorn and nanaimo bars I should've been stronger.  I found the carrots filling so I'll have to cut some and some celery and bring that to work in the future.  Time to break out the big lunch bag and fill it full of veg!  I am trying to eat vegan strictly again to help with any possible insulin resistance and for the same reason I'd like to reincorporate some fasting but holy with this level of hunger...I dunno.  

Having red lentil pasta with a homemade arugula pesto for dinner!  I am going to get husband to set my bike up on the trainer so I can spin out while watching tv and burn some calories without the constant pounding of running.  I really want to avoid zyprexa weight gain.

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It's fairly neutral energy-wise for me.  I take it at night-time and it seems to help with sleep, but it isn't the "swallow it and fall over" feeling that some people have.  I think that's what it is more stereotypically known for.  I took 2.5mg on the day from hell and didn't fall asleep but also didn't feel energized.

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Wow, it sounds like you're really having a good response to Zyprexa! The appetite thing I think is almost unavoidable though. Some have it to lesser or greater degrees than others. 10 mg just taken for one day makes me binge eat uncontrollably for several days afterwards. 10 mg may be sufficient for you, but if you continue to have the "aura"-like hallucinations, perhaps 15 mg would be your sweet spot. Hopefully you wouldn't have to go to 20 mg or go off-label and go higher.

From what I've read, Zyprexa really should not be used as a long-term maintenance med unless nothing else works due to its diabetogenic mechanism of action. You can eat as healthily as you can, exercise as much as you can, etc., but it will still mess with glucose metabolism as well as cholesterol and triglycerides if you take it for several years. At least, that's my understanding. I know of someone who took it long term and of course got diabetes but even had to have a toe amputated. I'm not by any means trying to fearmonger about this medicine because it works fantastically for many people and enables them a quality of life they wouldn't be able to have without it otherwise.

Just be very careful and have regular testing of fasting glucose and A1c done with your GP.

Metformin is a great prophylactic idea as it will help maintain insulin sensitivity, and will do so in a dose-dependent manner. I heavily recommend the extended-release form as the IR form is very hard on your GI system. Metformin has many other benefits too, such as having general anti-aging properties.

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@dancesintherain I'm glad it was so helpful to you that day.  It sounds like it really is a good med.

@mikl_pls I've read the same about Zyprexa.  It's why I'm going to try to be strict vegan as it should keep all of that lower and hopefully somewhat maintain insulin resistance, in addition to the metformin (which apparently lowers vitamin B12 - I do supplement that, but mine isn't high, so I'm going to have to monitor that too).  

I think the problem is I've been through most AAPs and two APs - so it was this or Clozapine, and we decided to try Zyprexa first.  

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@mikl_pls I don’t want to become diabetic. My brother had type 1 and died from it. He didn’t take good care of it and I know I wouldn’t either. I’m very nervous to stay on zyprexa but I fear med changes at this point. Zyprexa is my miracle med. I do best on -pine meds. Maybe I should just take it PRN. I don’t know. I’m worried I’ll deteriorate without it. I’ll have to talk to my pdoc.

Not trying to thread hijack. So sorry @jarn  zyprexa helps me sleep at 20 mg at bedtime. If I take like 5 mg or 10 mg during the day I am not tired. I’m glad it is helping you. So very glad. 

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11 hours ago, Wonderful.Cheese said:

@mikl_pls I don’t want to become diabetic. My brother had type 1 and died from it. He didn’t take good care of it and I know I wouldn’t either. I’m very nervous to stay on zyprexa but I fear med changes at this point. Zyprexa is my miracle med. I do best on -pine meds. Maybe I should just take it PRN. I don’t know. I’m worried I’ll deteriorate without it. I’ll have to talk to my pdoc.

Not trying to thread hijack. So sorry @jarn  zyprexa helps me sleep at 20 mg at bedtime. If I take like 5 mg or 10 mg during the day I am not tired. I’m glad it is helping you. So very glad. 

You're not hijacking!  

I was a little slow this morning, so it's possible I was a bit more sedated.  I still got up okay - speaking of which, I should go take it and the Metformin!

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On 2/22/2020 at 7:39 AM, jarn said:

I think the problem is I've been through most AAPs and two APs - so it was this or Clozapine, and we decided to try Zyprexa first.

The appetite and diabetes problems associated with Zyprexa are nothing in comparison to clozapine. Clozapine can really screw you up big time.

On 2/22/2020 at 8:45 AM, Wonderful.Cheese said:

@mikl_pls I don’t want to become diabetic. My brother had type 1 and died from it. He didn’t take good care of it and I know I wouldn’t either. I’m very nervous to stay on zyprexa but I fear med changes at this point. Zyprexa is my miracle med. I do best on -pine meds. Maybe I should just take it PRN. I don’t know. I’m worried I’ll deteriorate without it. I’ll have to talk to my pdoc.

Don't fix what isn't broken. If you get diabetes, cross that bridge if you come to it. There are plenty of medicines to address it. You're already on metformin which helps protect against it. There are other -pine meds that could possibly benefit you.

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2 hours ago, mikl_pls said:

The appetite and diabetes problems associated with Zyprexa are nothing in comparison to clozapine. Clozapine can really screw you up big time.

Don't fix what isn't broken. If you get diabetes, cross that bridge if you come to it. There are plenty of medicines to address it. You're already on metformin which helps protect against it. There are other -pine meds that could possibly benefit you.

Strongly agree with both of these opinions 

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16 minutes ago, jarn said:

@mikl_pls yeah clozapine can be a bit...a lot...so Zyprexa was the choice before we hit that end of the junction.

Good call. While zyprexa didn’t help me the way clozaril did, clozaril is so labor intensive - with the blood tests and the slow action and sedation - it took me a very long time to figure out the right dose 

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2 hours ago, Iceberg said:

Good call. While zyprexa didn’t help me the way clozaril did, clozaril is so labor intensive - with the blood tests and the slow action and sedation - it took me a very long time to figure out the right dose 

Yeah we had hoped to avoid the clozapine work with Zyprexa - we'll see.  I have a sore/swollen lymph node but I think that's an okay symptom since I don't have a rash or fever.  

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12 hours ago, jarn said:

Yeah we had hoped to avoid the clozapine work with Zyprexa - we'll see.  I have a sore/swollen lymph node but I think that's an okay symptom since I don't have a rash or fever.  

I hope the swole  lymph node gets better jarn. Could be a start up side effect. That’s what I’m hoping. It’s good I think that you don’t have a rash or fever. That’s a really good thing. Keep an eye on it. I’d tell your pdoc maybe too? Especially if it seems to get worse.

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  • 1 month later...
On 2/21/2020 at 11:26 PM, mikl_pls said:

Wow, it sounds like you're really having a good response to Zyprexa! The appetite thing I think is almost unavoidable though. Some have it to lesser or greater degrees than others. 10 mg just taken for one day makes me binge eat uncontrollably for several days afterwards. 10 mg may be sufficient for you, but if you continue to have the "aura"-like hallucinations, perhaps 15 mg would be your sweet spot. Hopefully you wouldn't have to go to 20 mg or go off-label and go higher.

From what I've read, Zyprexa really should not be used as a long-term maintenance med unless nothing else works due to its diabetogenic mechanism of action. You can eat as healthily as you can, exercise as much as you can, etc., but it will still mess with glucose metabolism as well as cholesterol and triglycerides if you take it for several years. At least, that's my understanding. I know of someone who took it long term and of course got diabetes but even had to have a toe amputated. I'm not by any means trying to fearmonger about this medicine because it works fantastically for many people and enables them a quality of life they wouldn't be able to have without it otherwise.

Just be very careful and have regular testing of fasting glucose and A1c done with your GP.

Metformin is a great prophylactic idea as it will help maintain insulin sensitivity, and will do so in a dose-dependent manner. I heavily recommend the extended-release form as the IR form is very hard on your GI system. Metformin has many other benefits too, such as having general anti-aging properties.

I'm off Zyprexa but want to take it instead the quetiapine. I didn't had the urge to eat the munchies with Zyprexa, but all they describe the cravings for food/sugar I get it with Seroquel, only with 100mg at night. Tomorrow I have an appointment to the insurance because now I can handle a job and they give me free the olanzapine, fluoxetine, clonazepam and methylphenidate. I want to stay with only those just like before.. greetings!! 

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On 2/21/2020 at 5:33 PM, jarn said:

I also ate a bag of baby carrots 

@jarn I love this. In the non-profit community in my city, with which I am extensively involved, I am kinda notorious for my baby carrot consumption. Usually snacks are on the table at meetings, and usually there’s a bowl of carrots, and often I eat the whole thing by myself.

Nobody knows I’m doing it to force myself not to say what I’m thinking exactly as I’m thinking it. Carrots are a tact-inducer. Having a mouthful of half-chewed raw carrots makes you pause and think about how best you might phrase what you want to say. I recommend carrots as an intervention for any autistic person forced into a meeting.

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